The Miserable Prednisonites Club

[Yupitsme]

i'm finally down to 10 mgs, will be at 5 soon. I would stay at 10 if my face would go down! lol Its weird tho bc i never noticed when i was on prednisone before that i could have a bad face day or a better face day lol, sometimes it looks huge and others not as huge (but still huge lol)

Jennifer,

I'm curious, what would be the primary thing that you attribute your 14 year remission to?

 

[Jennifer]

Jennifer,

I'm curious, what would be the primary thing that you attribute your 14 year remission to?

I believe its a combination of two things. The resection which kick started remission and continuing on medication to maintain remission.

I stayed on 6MP and Asacol for many years after my resection. I was taken off of Asacol a few years ago (GI didn't think I needed it anymore, was a different GI than the one who I saw before my surgery) and stayed on just 6MP. Unfortunately the 6MP started to affect my liver last year so since mid 2012 I've been trying out other medications to try and keep me in remission (tried Humira then Remicade (neither worked out) and now I'll be starting Methotrexate soon). I haven't been stress free and haven't followed any diets. I also still have regular testing done to make sure everything is fine (blood work (once a month), scopes (every 2-4 years) and small bowel follow through (every 2 years)).

 

[Yupitsme]

I'm so happy for you, and encouraged as well to know its possible. Thank you.

 

[mwkwmn]

I have been on prednisone longterm and it was the only drug that would put my crohns in remission. I did however develop the dreaded side effects such as osteoporosis and adrenal insufficiency. I had a very difficult time weaning off of prednisone so I could start tysabri. I was on tysabri for two years and switched insurances and theybwould not cover so I am backnon prednisone at 7.5 mg a day. I currently am doing well with my crohns even with a lot of stress going on. I think everybody is different with medications but for me prednisone has given me the most relief. I wish everyone the best of luck regardless of which medication gives them the most relief from there symptoms.

 

[lsgs]

Can any of you prednisonites tell me if you found prednisolone got less effective the more you used it? My last taper hasn't been as effective as the first time or indeed second time I tapered. It's still holding the majority of the d at bay but my pain has returned and I was hospitalised last weekend. I'm still fighting for a diagnosis and GI says this is evidence against IBD and that me feeling better is all in my head... despite my blood results supporting the improvement and no more nocturnal BM's/max 3 BM's per day compared to 12 before pred.

Last taper was 30mg cutting down 5mg every 4 days and I didn't feel like this worked that well. I'm starting to feel a bit better now though.

My GI says prednisolone does not ever get less effective.

 

[meganmila]

Is feeling like you're bloated a side effect? And I'm still having diarrhea for about a week now...I dunno if it's the antibiotics or what...ugh!

 

[CrohnsChicago]

Yes, bloating is all too common. I managed to avoid it the first few times on pred but this last time I felt like my cheeks were blowing up even though they weren't that bad.

Drinking plenty of Water in fact helps counter bloating as well as reducing your sodium intake from foods. Too much sodium on prednisone will almost certainly puff you up.

If after a week you are still not seeing your symptoms clear up you may want to check with your GI, it's possible that he may have to readjust your medication.

Hope it eases up on you soon.

 

[meganmila]

Thank you! I just feel bloated in the stomach area...my face looks the same ( it might puff up who knows) And every time I go to the restroom I get diarrhea like even for peeing..most of the time the other stuff comes out. I dunno if it's from the enemas they gave me or not..you would think that would go away.

 

[Mehita]

DS just started another round of pred three days ago. While I know mood swings are part of the deal, they seem worse than his previous stints on pred. The uncontrollable crying for hours is the worst. I'm afraid to send him to school. He's 80 lbs and on 40 mg. He's been on this dosage before, but I'm wondering if even a slight dosage decrease might curb the crying? It did take care of his flare symptoms almost instantly.

My other question (and this is posted in the Parents section as well), this is supposed to be a short pred burst that we were going to stop after a week if symptoms were under control, which they seem to be already. But, he also just started Azathioprine which will take awhile to kick in. Should I ask about maybe staying on the pred and tapering so that the Aza has time to work?

All the fun end of the school year stuff is starting to happen for the kids and DS doesn't want to miss any more school. Tapering would get him through... but do we want to be on pred longer than needed?

Any thoughts?

 

[SarahBear]

Sounds very frustrating, Mehita! The end of the school year is definitely not a good time to be sick / dealing with Pred. But then again, when is a good time?!

If you're wondering about a longer Pred taper, you might as well call the doctor and ask. It sounds as if it would be a good idea.

A little decrease could help with the mood swings - hopefully it will at least calm them.

:hug: to both of you. I hope he can start feeling better soon!

 

[Josephine]

Down to 5mg, still sign of flaring and I think stress of worrying about daughter suspison auto immune disease of some sort I think Crohns or something similar. I think might have to contact IBS Nurse.

mydaughter blood test results back Thursday.

 

[CrohnsChicago]

if you are at 5mg and still flaring you need to let your GI know because you are currently not at a therapeutic dose. More likely than not they will need to increase your dosage of pred and decide what to do next if the pred doesn't hold up.

In the meantime, mind your diet, take your meds and try to find moments to relax if you can.

Hopefully you get some clear answers with your daughters test results and you can have a moments peace :hug:

 

[Angie's Mom]

Hi, I've been on Prednisone since November. I had 2 failed taper attempts the second of which put me in the hospital for 9 day on a higher IV dose of Prednisone then I had started on! Any side effect that I could get, I have. The only thing I didn't get was a false sense of self importance!

My face is so disfigured from the moon face, I actually had an off duty nurse stop me a a pharmacy to tell me that she thought I was having an allergic reaction to something! I've gained 20lbs that seems to be sitting like an inner tube around my mid section and around my upper arms. I've had bad acne for the last 6 months and about 3 months ago I started to grow side burns and a beard. Over the last 4 weeks my normally thick hair has started to fall out in alarming hand falls. Add to that the buffalo hump, hot flashes and rood rage.... I'm not sure how my husband and daughter are dealing with me!

To make matters worse, after tapering verrrrrryyyyy slowly for the last 3 months, I relapsed!! Now I'm stuck in a holding pattern on the prednisone until I can start on remicade, ( which won't be for another 6-8 weeks!)

The whole thing has me really depressed and spending a lot of time hiding out at home.

Any tips on how to survive going through all this?

 

[lsgs]

Hi, I've been on Prednisone since November. I had 2 failed taper attempts the second of which put me in the hospital for 9 day on a higher IV dose of Prednisone then I had started on! Any side effect that I could get, I have. The only thing I didn't get was a false sense of self importance!

My face is so disfigured from the moon face, I actually had an off duty nurse stop me a a pharmacy to tell me that she thought I was having an allergic reaction to something! I've gained 20lbs that seems to be sitting like an inner tube around my mid section and around my upper arms. I've had bad acne for the last 6 months and about 3 months ago I started to grow side burns and a beard. Over the last 4 weeks my normally thick hair has started to fall out in alarming hand falls. Add to that the buffalo hump, hot flashes and rood rage.... I'm not sure how my husband and daughter are dealing with me!

To make matters worse, after tapering verrrrrryyyyy slowly for the last 3 months, I relapsed!! Now I'm stuck in a holding pattern on the prednisone until I can start on remicade, ( which won't be for another 6-8 weeks!)

The whole thing has me really depressed and spending a lot of time hiding out at home.

Any tips on how to survive going through all this?

Hi, I'm really sorry I don't have much advice for you but I could have written your post. You are absolutely not alone. I have all the same problems as you and I know just how awful it is. I also keep relapsing whenever I get to a low enough dose despite being absolutely desperate to get off pred. My docs have literally just decided I can go on aza if I want after 10 months of high dose pred so if I taper off now I have no maintenance med. I basically have the choice of becoming even bigger and hairier and staying on pred (I'm still gaining, even on 8mg) or becoming sick again. Great eh?

I've gained 39lb since December. I have the facial hair, the little hump of fat at the back of the neck, my shoulders neck and upper arms are bloated and my face is unrecognisable. My heart palpitates and I have a tremor. My hair is falling out and thinning and blocking up the shower and vacuum. I've had complaints at work about my hair falling out!

I find I don't want to meet people I haven't seen in a while. I went to the shops with my husband and met an old friend from university and was mortified to the point I'm sure she probably thought I was being mean!! But I was just embarrassed.

Pred both saved and ruined my life

I hope you feel better soon. Just remember when you get off pred everything will come back to normal, that's what's getting me through. Especially the facial hair, apparently it just falls out and I cannot wait for that day!

 

[amrycrohns]

Any tips on how to survive going through all this?

There is no good answer to this, in the process of getting any of us in remission there will be miserable days, weeks and months. You just have to stay positive till the doctors can get medicine that will work on a long term basis. Wish you the best of luck with remicade. Just remember this is temporary till another medication works.

 

[CrohnsChicago]

FINALLY off of a 4month run with pred! Just on Asacol and 6MP now...wish me luck!

I also requested a bone density test since I have been on prednisone for about 9 of the past 12 months (YIKES!!!). Will be doing that in a few weeks. I strongly recommend all of you on prednisone long-term consider doing the same if you haven't already to get a baseline (should you ever have to go on prednisone again) and determine your risk of osteoporosis.

(now to figure out the best way to lose a couple of these pred pounds... )

 

[lsgs]

FINALLY off of a 4month run with pred! Just on Asacol and 6MP now...wish me luck!

I also requested a bone density test since I have been on prednisone for about 9 of the past 12 months (YIKES!!!). Will be doing that in a few weeks. I strongly recommend all of you on prednisone long-term consider doing the same if you haven't already to get a baseline (should you ever have to go on prednisone again) and determine your risk of osteoporosis.

(now to figure out the best way to lose a couple of these pred pounds... )

Congratulations!

My rheumatologist should have organised a Dexa scan, my GI even wrote to him to suggest it and nothing. It worries me. I've been on varying doses for 10 months now

 

[Angie's Mom]

Congrats Crohnschicago! From what I'm told, as soon as you are off the prednisone you should just naturally drop a good chunk of weight. Mostly water weight, but hey... Better than nothing!

I'm also going for a bone density scan soon, I'm nervous because osteoporosis runs in my family and my GP was concerned that my normally strong nails have become brittle and my teeth are unbelievably sensitive.

I also tested really low for my vitamin D levels (low Normal is around 75, mine tests came back at 24!)

Is anyone else experiencing joint pain? I can barley lift my arms because my shoulders ache so badly. I've also been having really bad muscle spasms in my fingers, toes and calves.

 

[CrohnsChicago]

Is anyone else experiencing joint pain? I can barley lift my arms because my shoulders ache so badly. I've also been having really bad muscle spasms in my fingers, toes and calves.

Thanks everyone

Yes. I get knee pains specifically. It is the most uncomfortable now when I am exercising or in any position where my weight is being held up my by knees. I tend to get these pains off and on during the end period of a taper. It calms down after a few weeks but I have never been off of pred long enough to know if it is permanent damage because of the meds now or if it is simply a withdrawal symptom. Another reason why I want the bone density test and further examination in a few weeks if it does not go away.

 

[Angie's Mom]

I find my knees and ankles really hurt when it's humid. My shoulders ache all the time now though.

My other question is if anyone on prednisone is getting scalp sores? I find that there are really tender spots on my scalp that feel like sores but I can't feel anything with my fingers and I had my husband look but he doesn't see any thing.

Anyone else have this?

 

[TwinkleToes]

Does a false sense of superpowers and invincibility count as symptoms? Because it's really disappointing when you finally realize you had neither.

Haha, you mean i'm not Superwoman? Normally I have a hard time lifting my 30lb Niece, but yesterday I was lifting her over my head like she weighed 5lbs! lol

 

[zilla7777]

I've been on 3 stints with Pred and it's resulted in osteoperosis beginning in my back Whilst on it though, I got everything. The round face, sleeping issues, acne, fluid retention, splitting joint pains and muscle spasms amongst other things.

It's still a wonder drug though.

 

[Angie's Mom]

Thanks Zilla7777.
Unfortunately in my case the Prednisone hasn't done its job. It's okay though, I'm starting a new drug soon and I'm optimistic it will help. Today is my daughters baptism, the sun is shining and I have just enough hair left that I was able to do a lovely hair style that makes the moon face look less full! Wish me luck that I don't end up running through the church during the service to find a toilet!!

 

[zilla7777]

Well that's no good, I hope you find a treatment that helps you! Have you asked about a liquid diet (Enteral Nutrition) to try and stop the flare? I am currently on it and it seems to be doing wonders. Hair loss is a terrible side effect =/ We're all in it together though Good luck!

 

[Angie's Mom]

Well that's no good, I hope you find a treatment that helps you! Have you asked about a liquid diet (Enteral Nutrition) to try and stop the flare? I am currently on it and it seems to be doing wonders. Hair loss is a terrible side effect =/ We're all in it together though Good luck!

I haven't looked into changing my diet at all. I'm very cautious about what I eat. Should the remicade not work for some reason I will look into a much more holistic diet based option.

BTW, my daughters christening was a great success! I made it through the whole service with making a bathroom dash!

 

[SarahBear]

The EN could replace the Prednisone. If it's really messing up your back, it could definitely be worth asking about.

I'm glad things went well!

 

[Angie's Mom]

A question to all of you, over the last 5 hours my arms, hands, chest, face and head have become numb. It's a really intense pins and needles type sensation. My hands and feet have also started sweating really badly but no hot flash. Has anyone had this? At what point should I be concerned? I've been on pred for 8 months now and I'm hoping this is not a new side effect? Any advice?

 

[Jennifer]

My other question is if anyone on prednisone is getting scalp sores? I find that there are really tender spots on my scalp that feel like sores but I can't feel anything with my fingers and I had my husband look but he doesn't see any thing.

Anyone else have this?

When I was on high doses of Prednisone I could feel spots under my scalp that were swelling. My hair would also thin out in those spots. Its possible it could be from the water retention.

A question to all of you, over the last 5 hours my arms, hands, chest, face and head have become numb. It's a really intense pins and needles type sensation. My hands and feet have also started sweating really badly but no hot flash. Has anyone had this? At what point should I be concerned? I've been on pred for 8 months now and I'm hoping this is not a new side effect? Any advice?

Wow, you need to get off Prednisone soon. 8 months is a long time to be on steroids. Has your doctor talked to you about switching you over to Entocort to help wean you off of Prednisone? As mentioned EN http://www.crohnsforum.com/wiki/Enteral-nutrition has been proven to be almost as effective as Prednisone without all the horrible side effects so if you do start to relapse flare wise, the EN can help to prevent that from happening while you continue weaning off the Prednisone (Entocort can also do this). I don't see Enteral nutrition (EN) as a holistic approach really. EN gives you much needed nutrients while allowing your bowel to rest. Bowel rest is almost as effective as steroids but may not be meant for long term. I had to do it before my diagnosis while hospitalized so they could keep running tests (couldn't eat because of the tests) and during that time my bleeding and pain stopped. Don't get me wrong I was eventually put on medication but attacking the disease from all angels really is best.

As for the numbness, are you in any particular position when these areas go numb? Does it go away when you shift positions or lie down? Since you're on Prednisone for so long it would be good to have your blood sugar tested (steroids can raise your blood sugar and even trigger diabetes which can cause numbness and tingling). Also have your B12 tested as being low/deficient can also cause numbness.

 

[Angie's Mom]

Thanks for the quick response Jennifer.

The goal with my doctor over the last few months was a verrrryyyy slow taper off of the Prednisone. Unfortunately, every time I got to a certain dose (usually around 20mg) I just flare right back up. Pending government approval for assistance I'm being switched to Remicade. I'm very optimistic about this working as I find myself really desperate to get "Me" back.

I'm leaving on a trip on Thursday (it was booked months ago and was supposed to be a treat to celebrate finishing the Prednisone) and over the last 4 days I've started really flaring up agin. *sigh* patience really is a virtue.

As for the numbness, it lasted for 8 hours straight with no breaks and then finally stopped. Im not able to associate any particular sitting or standing positions with the numbness but it is gone! I'm due in for blood work very soon and I will be sure to inquire about my B12. I know that my vitamin D levels are dramatically low and we are trying to get them back up.

As for partaking in a liquid diet, when the flare ups are really bad it's usually the route I go. Fortunately the ravenous hunger cravings from the steroids are under control which makes it much easier to do this!

It's been a long road and all I can do is wait and try to remain optimistic!
Thanks!

 

[CrohnsChicago]

A blessing and a curse......hahahahaha!

 

[Mountaingem]

I've been on pred off and on for the last 15 years and this time seems worst of all. IDK if it's because I've turned 40 or what, but I feel like a nervous wreck. I can't sleep, my heart pounds all the time, I have butterflies in my stomach to the point I cannot eat. I also have been crying off and all on the time.

I'm going to talk to my doctor but I don't see any end in sight. I can't go off of it because every time I lower the dose I flare up again. :ybatty:

 

[Angie's Mom]

Hi Mountaingem,
I'm sorry to hear you are having such a rough go of things this time around. I hope your doctors are able to do something for you. Are you on any medications now that you've not taken while on prednisone? Maybe it's some kind of drug interaction? Just a thought.

 

[UnXmas]

I've been on pred off and on for the last 15 years and this time seems worst of all. IDK if it's because I've turned 40 or what, but I feel like a nervous wreck. I can't sleep, my heart pounds all the time, I have butterflies in my stomach to the point I cannot eat. I also have been crying off and all on the time.

I'm going to talk to my doctor but I don't see any end in sight. I can't go off of it because every time I lower the dose I flare up again. :ybatty:

I had similar reactions to prednisone. My doctor prescribed me with anti-anxiety medication. I was against it at first, because I'd never believed I'd need medication to control my mood - antidepressants or whatever. I wanted to think I was somehow above having my emotions and personality determined by drugs and chemicals. But it absolutely worked! So much so that even after I came off prednisone I kept on the anti-anxiety med because I'd never realised I could feel so calm - and that I could have done with anti-anxiety meds even when not on pred!

It is an option worth considering if you have to take steroids.

 

[Mountaingem]

Hi Mountaingem,
I'm sorry to hear you are having such a rough go of things this time around. I hope your doctors are able to do something for you. Are you on any medications now that you've not taken while on prednisone? Maybe it's some kind of drug interaction? Just a thought.

Come to think of it, I'm on Estrace and Effexor, not for depression but for low serotonin. Maybe that's what it is? I emailed my doctor, just trying to chill out until she responds. I literally feel like I could race around the block right now, ugh.

 

[Mountaingem]

I had similar reactions to prednisone. My doctor prescribed me with anti-anxiety medication. I was against it at first, because I'd never believed I'd need medication to control my mood - antidepressants or whatever. I wanted to think I was somehow above having my emotions and personality determined by drugs and chemicals. But it absolutely worked! So much so that even after I came off prednisone I kept on the anti-anxiety med because I'd never realised I could feel so calm - and that I could have done with anti-anxiety meds even when not on pred!

It is an option worth considering if you have to take steroids.

*high fives you* I've always thought the exact same thing, like somehow I could just tough my way through it. I'll definitely keep this option open, thank you for sharing your experience with me. It's always nice to learn something about yourself from the example of others

 

[isabelle]

Hi Mountaingem, I agree with UnXmas--my first time on Pred, a few years ago, I had a very similar experience to yours. It was awful. This time around (I'm on it now) I started taking 100 mgs of Trazadone every night to sleep and I swear I've been tolerating 40 mgs of Pred/day for the last 3 1/2 weeks very, very well and I think it's the Trazadone that makes the difference. The other thing I've been doing differently this time around is sticking to a low carb, high fat diet. I keep my net carbs under 25 g/day and eat lots and lots of good fats. Prednisone can wreak havoc on your blood sugar, from what I understand, and I think that keeping carbs super low counteracts this. Good luck and hang in there. Isabelle

 

[Mountaingem]

Thank you-I've never heard of Trazadone. My doctor just called in a prescription of Ativan so hopefully that will help. I've been sticking to a low carb diet, as I usually do on prednisone because it has affected my blood sugar in the past, and the odd thing is I'm losing weight.

It's not just the sleeplessness, I'm forgetful,scatterbrained, I repeat myself a lot and I'm super clumsy too. The doctor seemed to take it with a grain of salt.

 

[isabelle]

Oh gosh, yes... Hopefully the Ativan will do the trick. I, too, lose weight on Pred. You're right: it is weird! How long have you been on it? I felt pretty crazy the first couple of weeks--scattered and clumsy just like you said, then my body settled in and now I'm mostly okay except for having trouble sitting still and focusing. Are you getting plenty of good fat in your diet?

 

[Mountaingem]

I had a 120mg shot and then started 20 mg a day about four weeks ago. I've taken higher doses than 20 mg, so I'm wondering if it is the shot in combination with the pills. I may not be getting enough good fats, though, come to think of it. Any recommendations?

 

[isabelle]

Hmmm, wow, 20 mgs doesn't seem like it should be causing such bad mental disturbances, does it? But you're right, maybe in combo with the shot, although the shot was a while ago. And you've been on it long enough that if your body was going to settle into it, it seems like it would have by now... I wish I had more good ideas.

Here are the ideas I do have:

Good fat: virgin coconut oil, extra-virgin olive oil, carlson's finest fish oil, saturated fat from fatty meats: organic/free-range chicken thighs with skin, grass-fed non-lean ground beef, sardines packed in olive oil, pastured organic butter if you can eat dairy (I can't, but would eat it if I could.) If you're eating low-carb, definitely up your fat intake. I eat around 145 g of fat/day...and I've leaned out considerably since I started eating that much fat. Go figure.

The other thing that might help if you're not already doing it is taking a good, strong B-complex, if you feel comfortable taking supplements. I take Country Life Coenzyme B-Complex, two in the morning and two at night on an empty-ish stomach. I can't say for sure but that may be helping me tolerate the pred this time around.

 

[Susan2]

...avocados, peanut butter (any of the nut butters, in fact)

 

[Mountaingem]

Oh I love avocados but I cannot tolerate them Peanut butter, oddly enough is a go. Hubby brought me some whey protein so I'll use that as well.

The GI said it's not just the oral dose, it's that I've been on injections and pills on and off for a year so it's a bit of a cumulative effect in my system. I'm definitely giving the CoQ10 a try, too.

 

[UnXmas]

Oh I love avocados but I cannot tolerate them Peanut butter, oddly enough is a go. Hubby brought me some whey protein so I'll use that as well.

The GI said it's not just the oral dose, it's that I've been on injections and pills on and off for a year so it's a bit of a cumulative effect in my system. I'm definitely giving the CoQ10 a try, too.

That's odd, avocados are one of the easiest fruits to digest. I don't do well with fibre at all but avocados I'm fine with. Do you think it might depend on how ripe they are?

Prednisone definitely had a cumulative effect on me. Rather than adjusting to it and side effects easing off over time, I started off feeling fine, with no side effects at all, and the longer I was on it, the worse it got, even though the dose hadn't changed. So even if 20mg doesn't sound a lot, it may be to do with the amounts you've had over a longer period rather than what you're taking now day to day.

I lost weight on prednisone too - from what I'd read about the hunger and food cravings I really wasn't expecting to!

 

[isabelle]

What is a typical Prednisone taper? Down by 5 mgs per day every 3 days, 5 days, one week?

 

[Aphrodite_x]

Love love love Prednisolone!

When I was first diagnosed, I had all the side effects...moon face, acne, lack of sleep etc. In fact, I started my job around then, and my work pass has a picture of me on it with a big hamster face! Just doesnt look like me at all.

Back on them again now. Started on 40mg around 6 weeks ago, tapering down 5 mg a week. Felt like I could take on the world. I was running in the morning again, was like super housewife with cleaning at home. Got down to 30mg and felt awful again. So right back up to 40mg and started back on azathioprine, tapering the pred down 5mg a week again. Got down to 25mg this time before I started feeling absolutely horrible! (This was just yesterday!) Called my consulatant and went back up to 40mg again this morning, and again feel great.

Had no side effects this time. I've got my appetite back, but I'm not eating like a maniac like the last time, which is good because I'm not gaining any weight at all, or losing any. Stayed the same for the last 6 weeks!

Here's hoping the aza kicks in soon and I can come off them though, only side effect this time is the lack of sleep at night, which in turn makes me tired through the later part of the day.

Is it just me as well or does anyone find that the pred runs out later in the evening? I find around 7.30-8.00pm every night, after taking pred about 7am, I feel really really horrible, sicky and stomach pain and dioreha starts again. Weird.

 

[Angie's Mom]

What is a typical Prednisone taper? Down by 5 mgs per day every 3 days, 5 days, one week?

I'm not sure there is a typical taper. My doctor started me off by tapering by 5 mg once a week. That lasted 2 weeks before I flared right back up. I've been on prednisone for 9 months and up until a month ago I was tapering by 2.5mg every 2 weeks.

I'm starting on Remicade this Friday. I really hope this works because I want off the Prednisone really badly. Other than inundate me with side effects, Prednisone has not done what it was supposed to do at all!

 

[lsgs]

What is a typical Prednisone taper? Down by 5 mgs per day every 3 days, 5 days, one week?

I tapered 5mg a week until 10mg, then 1mg every 2 weeks.

(roughly)

 

[Mountaingem]

What is a typical Prednisone taper? Down by 5 mgs per day every 3 days, 5 days, one week?

I don't know what it typical, tbh. I've been on high doses for months and then taper by .5 milligrams a week, and other times it will be 10 mg ever few days followed by a longer stint on 5 mg, tapered to 2.5. I think it depends on your body's reaction to it as to how the doctors will taper. They try not to do it too fast and trigger another flare.

 

[SarahBear]

What is a typical Prednisone taper? Down by 5 mgs per day every 3 days, 5 days, one week?

I tapered down by 5mg a week.

 

[SarahBear]

Is it just me as well or does anyone find that the pred runs out later in the evening? I find around 7.30-8.00pm every night, after taking pred about 7am, I feel really really horrible, sicky and stomach pain and dioreha starts again. Weird.

You might want to talk to your doctor about splitting the dose between morning and evening. That's the way I took it. This does generally cause more issues sleeping, but if you're feeling unwell it might benefit you. Your doctor may be able to give you something to help you sleep if it becomes any issue, anyway.

 

[isabelle]

Thank you everyone for the taper info... Very helpful!

 

[isabelle]

Aphrodite_x: I have to split my dose, 20 mgs w/breakfast, 20 mgs w/dinner, otherwise I'm in pain again in the evenings. It's not great for your sleep, but like SarahBear said, your doc can give you something for that. Tylenol PM might work too...

 

[Mountaingem]

So I got lost on my way home from the grocery store and had to have hubby come pick me up. No more driving until this passes. GI says it could be a combo reaction to steroids, methotrexate, and dilaudid. I started the Ativan and feel much more calm, only now I want to sleep all the time. Well that's better than jumping out of my skin, I guess.

 

[Aphrodite_x]

You might want to talk to your doctor about splitting the dose between morning and evening. That's the way I took it. This does generally cause more issues sleeping, but if you're feeling unwell it might benefit you. Your doctor may be able to give you something to help you sleep if it becomes any issue, anyway.

Aphrodite_x: I have to split my dose, 20 mgs w/breakfast, 20 mgs w/dinner, otherwise I'm in pain again in the evenings. It's not great for your sleep, but like SarahBear said, your doc can give you something for that. Tylenol PM might work too...

See I thought about this, and asked my consultant, and she told me under no circumstances should I split them, they should all be taken in the morning. Its horrible though, I literally cant function at night at all, so I might need to ask her again.

Feeling good right now though mighty pred is doing its job, although it is only 10.30am. Yesterday, I started getting sore round about lunchtime so hopefully today is better! I have to get weekly blood tests too because of the aza, and when I went to get them done last night, the nurse told me that last weeks results came back and my inflammation levels were through the roof, her exact words 'meaning you have a flare up'. No sh*t sherlock.

 

[isabelle]

Mountaingem: Glad to hear you are feeling more calm. So sorry to hear about no driving! It's probably smart though... Hang in there and keep us updated.

Aphrodite_X: There is good info an the internet and on this forum about dose splitting. I did some research when the a.m. dose alone wasn't cutting it and what you're going through is not uncommon. A lot of people have to split the dose for it to be effective. I can't find the link right now or I'd send it to you...

 

[Aphrodite_x]

I'll have a google Isabelle thank you.

My only concern with that is taking less in the morning would make me feel horrible at work. I'd rather be able to function during the day for work and have to suffer at night, than have to suffer, albeit less, all day, if you get me?

 

[isabelle]

I get you... I really do! For me, the split dose is perfect. I feel good morning and night. Maybe experiment with splitting the dose for one day this weekend and see? I really tried not to split my dose because I wanted to sleep but the pain in the evenings got so bad I just had to. With trazadone and a little (ahem) herbal support I get about 5 hours per night. Not great, but could be worse.

 

[Aphrodite_x]

I might do that actually, good idea. 4 x tablets in morning and 4 with dinner, worth a try!

Also I'm considering some herbal assistance. Meant to be good for pain and if it helps me sleep, all the better! Don't wanna smoke it tho

 

[isabelle]

Good, let me know how it goes!

I smoke it but I wish there was a better way. Vaporizer, maybe? I really don't like being high, but it's made all the difference in my ability to sleep... Some people do a butter or oil, but my understanding is that it takes a lot longer to kick in and a lot longer to leave your system.

 

[Aphrodite_x]

I used to smoke normal cigarettes but they really badly hurt my stomach. Even the smell of a cigarette now sends me running for the nearest toilet! So I'd be terrified in case it did that. Maybe burn some into a yoghurt or something I've heard of people doing that haha. I have some sleepeaze tablets now I got from the pharmacy after I explained about the pred keeping me awake so hopefully these work!

The pred defo seems to be doing its job anyway, its only now I'm really starting to be sore. Coming to you live from the toilet pan!

 

[isabelle]

Ugh, you poor thing... Hang in there.

 

[Mountaingem]

My brain fog has cleared a bit, but now going for testing later this week to find out exactly what the problem is. *sigh*

 

[isabelle]

Good luck, Mountaingem... I hope you get some answers. Keep us updated.

 

[Aphrodite_x]

Good luck mountaingem xxxx

I've had an interesting morning. Had the most horrible night last night, up all night absolutely freezing, sweating buckets. I was in bed wearing my house coat and had a hot water bottle!

Called my consultant nurse and she told me get to a&e right away so came up. They're giving me drip buscopan and testing for salmonella. Seriously, docs have no clue when it comes to crohns, get me an ibd doc!!!

 

[Angie's Mom]

My brain fog has cleared a bit, but now going for testing later this week to find out exactly what the problem is. *sigh*

Good luck, I have faith they will figure this out for you. It sounds like your medical support team is listening to you and that is a really good thing.

 

[Angie's Mom]

Good luck mountaingem xxxx

I've had an interesting morning. Had the most horrible night last night, up all night absolutely freezing, sweating buckets. I was in bed wearing my house coat and had a hot water bottle!

Called my consultant nurse and she told me get to a&e right away so came up. They're giving me drip buscopan and testing for salmonella. Seriously, docs have no clue when it comes to crohns, get me an ibd doc!!!

Oh dear, fingers crossed its not more serious. When I was rushed to the hospital, I was treated by 2 teams the GI's (not my regular one) and the internal meds team. Of the 2, I would go back to internal meds. The GI's were brutal! They had me quranteened for 3 days and performed the most painful colonoscopy I've ever had in my life, I couldn't sit for 2 days!

Anyway, I hope you are feeling better.

 

[Aphrodite_x]

Thank you

Strangely enough it appears to be my heart they're concerned about. Heart rates far too high and I'm shaking like shit but I've always been shaky I just thought it was normal! They're not letting me out until it goes down booooo!

 

[Aphrodite_x]

Isabelle....I did what you suggested and for the past two nights have been splitting my pred dose, and it works brilliantly having 30mg in morning and 10mg at night, I've barely been up at all.

Tapering down now though so on 25mg in morning and 10mg at night as of today...seems to be ok so far!

Mountaingem have you had your testing yet? Hope you're feeling a bit better xx

 

[isabelle]

YAY!!!!!! So glad to hear it's helping! Splitting the dose made absolutely all the difference to me as well. And SO GOOD you're sleeping well. What a boon! What did they say at the hospital? Is everything okay?

And, yes, Mountaingem, what's the latest?

 

[Aphrodite_x]

Bit of a waste of time tbh....I spent all day on a sodium drip to get my heart rate down, then was told I could stay in if I wanted to see a GI doctor over the weekend, but basically I'm on the highest dose of steroids someone could take so he would only tell me to give the aza time to work. So I just went home! Luckily enough the split dosage is working really well, I got in from work last night and had dinner! And cleaned my bathroom and done a washing!! I've had to wait until the weekend for the past god knows how many weeks, so thank you very much for that advice! Not telling my consultant nurse right now though or she might give me into trouble haha.

 

[Angie's Mom]

Hi all, so I started my remicade and can't say I've really noticed a difference (I know, I know, give it time)
My GI doctor has started tapering my pred again. I can't wait to get off this stuff. Here is my question though, I've been steadily loosing large amounts of hair over the last 2 months and am down to around a quarter of what I started with. For any one who experienced this, did the hair loss stop almost immediately once you stopped using Prednisone?

 

[isabelle]

My pleasure! So glad it helped and so glad you're feeling better! xx

 

[isabelle]

Hi Angie's Mom, I had a huge amount of hair loss when I went off Pred. I lost about two-thirds. I think I would have lost more, but I did some research and bought a high quality B-complex supplement and my hair stopped falling out. It took a long while to re-grow, but at least I stopped losing it. When I started flaring this time around, I immediately started back on B vitamins. I actually started losing hair before even starting the Pred--the flare itself can make your hair fall out. I take Country Life Co-enzyme B-complex, two twice a day (4/day) and two Biotin pills a day, 10 mgs each. One with breakfast, one with dinner. The B-complex I try to take on an empty stomach. Country Life also makes a supplement called Maxi-Hair which I like. It has lots of B and Biotin and some other herbs. You could probably just take two/day of that, breakfast and dinner. There's also something called Biosil you could look into that helps with hair growth and skin health. I don't take it because I feel like the B vitamins do the trick. I'm currently flaring and on Pred and on 6-mp but my hair looks great and is not falling out in the least, thanks to the supplements. Good luck!

p.s. I used to be on Remicade. It worked like a dream. Give it time, hopefully it will help!

 

[Angie's Mom]

Hi Angie's Mom, I had a huge amount of hair loss when I went off Pred. I lost about two-thirds. I think I would have lost more, but I did some research and bought a high quality B-complex supplement and my hair stopped falling out. It took a long while to re-grow, but at least I stopped losing it. When I started flaring this time around, I immediately started back on B vitamins. I actually started losing hair before even starting the Pred--the flare itself can make your hair fall out. I take Country Life Co-enzyme B-complex, two twice a day (4/day) and two Biotin pills a day, 10 mgs each. One with breakfast, one with dinner. The B-complex I try to take on an empty stomach. Country Life also makes a supplement called Maxi-Hair which I like. It has lots of B and Biotin and some other herbs. You could probably just take two/day of that, breakfast and dinner. There's also something called Biosil you could look into that helps with hair growth and skin health. I don't take it because I feel like the B vitamins do the trick. I'm currently flaring and on Pred and on 6-mp but my hair looks great and is not falling out in the least, thanks to the supplements. Good luck!

p.s. I used to be on Remicade. It worked like a dream. Give it time, hopefully it will help!

Thanks Isabelle. For me the hair loss seems to be a byproduct of the prednisone accumulating in my system for a long as it has. I'm definitely going to look into some additional supplements to try to help with the re growth. I'm currently taking a D supplement to try to combat a really low level which I've learned can also contribute to hair loss.
Thanks so much for the response, I'm looking forward to getting through this. Here's hoping your flare up gets itself in check quickly and without a lot of discomfort. Sending good vibes your way!

 

[isabelle]

Yes, that makes sense. For me as well the worst hair loss came because of the Prednisone, not the flare. Getting your D levels back up is probably a really smart thing to do also. Losing a bunch of hair was incredibly disturbing to me...I'd always had a really thick head of hair and it had never even occurred to me that that may change. In fact, my first clues that I was flaring this last time around were increased hair loss and acne. I didn't put the pieces together until later. Hopefully, the B and extra biotin will help. I noticed a difference really fast, within a week my hair wasn't coming out in clumps. After I finished the bottle of B-complex, I stopped taking it and within a week my hair was falling out again. It was obvious that it was helping. I hope it has the same effect on you. Keep me updated on your progress with Remicade. I hope we can both get off the Prednisone soon! Good vibes to you, as well!

 

[twokatmew]

I've been on varying doses of pred since I was diagnosed with Crohn's in 1975. (I was 13.) I've always had a thick head of hair, but after the first 10 years on pred, I started losing gobs of hair. When I'd get my dose down to 5mg or less, my hair would start to grow much thicker.

Unfortunately I end up in a big flare if I try to go below 5mg. I also take azathioprine & Pentasa, but I had reactions to Remicade (with no benefit to my Crohn's).

Anyway, despite plenty of supplements, I continued to lose my hair due to long-term pred. I started having my hair cut shorter and shorter to help disguise just how thin it had become. Finally I just started shaving my head down to about 1.5mm. I've always hated wigs, so when I feel self-conscious I wear a hat.

I do miss my lovely thick hair, but I'm not able to go off pred, and after all these years, my hair probably wouldn't grow back anyway. But at least I'm still alive, eh? :smile:

4 Beta

 

[Pinkmonkey]

I'm now off pred but when I was on it I was first given intravenous steroids as I had a bad reaction to the pred and when I was finally put on the pred I gained lots of weight and my cheeks blew up and made me look like a chipmunk ha! My face is just starting to get back to normal now thank god! My cheeks would also go really really pink and they would start burning. And when I was on the pred I ate sooo much I just wouldn't stop I would just never get full and even when I wasn't hungry I would crave good it was so strange! I also just drank and drank and drank sometimes 5 litres a day! I am so glad I am finally of them but glad I was as they helped so much.

 

[rollinstone]

Wow twokatmew that's a lOng time on pred, does the 5mg dose keep your symPtoms at bay? And also wondering what otherside effects pred has caused over the years. Im on my 2nd course of pred ATM. Just started it, but scared coz last year I was on it fr 8 months straight due to messing up the taper

 

[twokatmew]

Wow twokatmew that's a lOng time on pred, does the 5mg dose keep your symPtoms at bay? And also wondering what otherside effects pred has caused over the years. Im on my 2nd course of pred ATM. Just started it, but scared coz last year I was on it fr 8 months straight due to messing up the taper

Since surgeries in 2004-5, 5mg Pred along with my other meds does quite well for me most of the time. Having more symptoms now though, but still relatively OK. Long-term side effects, I've got osteoporosis and cataracts, thin, fragile skin, and I bruise easily and badly. And of course, the hair loss. Before surgery, I was on 20mg Pred daily and still having terrible Crohn's symptoms.

Although I'd love to get off Pred entirely, it's not likely to happen. When I've gone off in the past, I've had bad flares that take many months of high-dose Pred to get back under control. Better to stay at a constant low dose, and 5mg isn't too bad. After all these years, my adrenal glands are near shot....

But ... Pred with all its awful side effects continues to be a lifesaver for me.

4

 

[Aphrodite_x]

I'm down to 10mg a day now 2 weeks and no more hamster cheeks!

 

[sarah-k]

Hi,

I was diagnosed with crohn's and was put of pred straight away. I started tapering my dosage a few months ago by 5mg each week. I'm currently on 5mg and my body is seriously struggling! Technically I should have been off of the stuff about 2 months ago, but with advice from my specialist I've had to maintain dosages before tapering it again on and off. So I'm finally down to 5mg but will prob have to go back up to 10mg as it's the worse it's been since my initial diagnosis *sigh

Can't wait to get off of it as I've had soooo many side affects! I've had insomnia, gained wight, I'm always hungry, I work with dogs so get jumped on a lot and get bruises when I wouldn't normally and the bruises take forever to heal, I'm moody, always tired, and get headaches.

I'm on a sh*tload of medication!
Azathioprine, prednisone, nexium, paxtine (for anxiety), and iron tablets. Ugh I hate feeling like I have no control over my body!

Oh well, pred is almost gone and then I don't have to take the nexium either. That will be nice

 

[Angie's Mom]

So I am officially off of Prednisone! I took my last tablet a few days ago. While I didn't expect things to go back to the way it was immediately, I was at least hoping my hair would stop falling out! Just wondering, how long did most people find it took for some of their side effects to go away? Things like hair loss, moon face, joint pain... I'm soooo eager to get my life back! Also, has anyone else found that they had bad diarrhea after stopping Prednisone?

 

[Crohn's gal since 1989]

I'm down to 10mg a day now 2 weeks and no more hamster cheeks!

ME TOO!!!:dance:

 

[woops!]

I have had CD for 17+yrs and have been on and off pred at times. Lately I have been having a flair and my GI gave me pred. Well!!!!!

Last night I was up at 2am mopping the kitchen floor.
I did get into bed, but I honestly can't tell you that I slept more than an hr.
Yesterday I burnt the edges of some toast and this seemed to warrent a full scale meltdown, tears, feeling like the world was ending sorta thing.
I went to the grocery store yesterday and bought everything that was not on my list, just cos I had to eat it. Came home and fixed a bunch of random stuff (see toast above).
This next week will be my most stressfull work week as we are moving to a new building. I am glad that I will have the energy to do this, but what kida melt down and I gonna have when I loose a box, coz you know when you move you always loose something. LOL

Seirously hate the SE of pred!

 

[AussieChick]

So in the last 6 months I have only been completely off Pred for 2 weeks. Back on it again and tapering. I am down to 20mg now, but for the last 2 days OMG my face it looks like a basketball!!! puffy, round, horrible I have read about the 'moon face' but i never really got it, but i definitely do now and boy is it poo When do we get a break honestly!?! Not only do we have to try to live and deal with this horrible disease but now I'm looking like a HAMSTER and dealing with this it all Arrgghhhhh!!! sorry vent over!!!

:eek2::eek2::eek2::eek2::eek2::eek2:

 

[Crohn's gal since 1989]

So in the last 6 months I have only been completely off Pred for 2 weeks. Back on it again and tapering. I am down to 20mg now, but for the last 2 days OMG my face it looks like a basketball!!! puffy, round, horrible I have read about the 'moon face' but i never really got it, but i definitely do now and boy is it poo When do we get a break honestly!?! Not only do we have to try to live and deal with this horrible disease but now I'm looking like a CHIPMUNK and doing it! Arrgghhhhh!!! sorry vent over!!!

What I love is when family tries to put a positive spin on it by saying, "We'll, you look younger because your wrinkles have all filled in!":voodoo::voodoo::voodoo:

 

[AussieChick]

hahaha the way I'm feeling today no one better say that!!! My partner described my face as a light bulb shape hahaha i laughed then told him to leave the room

 

[twokatmew]

Oh how I hate moon face ... and buffalo hump too. When I've gone up to 20mg daily, I gradually see side effects ... then suddenly at about two months, I blow up like a blimp.

 

[AussieChick]

argghhh it's horrible. My son said I still look beautiful but different haha

 

[elisacats]

I've been on pred for 6 months, I've tried to reduce twice but both times I flare up at 20mg. I've got severe moon face and have gained weight. It's horrible, I've found some side affects such as insomnia and mood swings, which I had at the start have now gone.

 

[AussieChick]

Hey Elisacats,
you sounds exactly like me. the 2 weeks i was off we thought I was ok, but i was starting to get symptoms again at the end of the second week and then ended up in hospital with a horrible flare and obstruction!!! Was terrifying

Yeh i take my pred first thing in the morning and still find it hard to go to sleep at night and omg the mood swings!! they have been the 2 main symptoms and a little weight gain, but this time around, Weight gain and Moon face for sure!! it's horrible

I hope your symptoms get better !!

 

[misschristina]

hiya!
I'm just new to this, and I happened to stumble upon this thread in particular and reading through everyones stories I can certainly relate to them and I don't feel so horribly alone any more!

I was started on Prednisolone in July when I had a flare for the first time and im currently tapering down, down to 25mg and should be off in September (yipee ) they have been great for getting rid of the main problem, but I am soo hungry all the time! when I eat, I think about what im going to eat next... all I want is food and its so hard not to give in. I keep trying to explain it to people, but they think im crazy!! I am also riddled with huge spots on my face, neck and chest. my face is starting to fill out because ive gained weight.

I was also wondering if people have ever felt really shakey on them? I have a constant tremble on them, and its making work very hard.. I can mainly notice it in my hands as im normally pretty steady and im always shaking like a leaf..

Anyway, thanks for listening I dont feel as depressed now. lol

 

[Angie's Mom]

Ugghhhh!! 1 week off of Prednisone and I've started flaring again. I'm totally beside myself!

 

[UnXmas]

hiya!
I was also wondering if people have ever felt really shakey on them? I have a constant tremble on them, and its making work very hard.. I can mainly notice it in my hands as im normally pretty steady and im always shaking like a leaf..

Yes! I didn't shake at all at first but by the end of my course of prednisone I shook terribly. I have a slight tremor all the time that's not due to meds, so I thought perhaps that made it worse for me.

 

[Aphrodite_x]

hiya!
I'm just new to this, and I happened to stumble upon this thread in particular and reading through everyones stories I can certainly relate to them and I don't feel so horribly alone any more!

I was started on Prednisolone in July when I had a flare for the first time and im currently tapering down, down to 25mg and should be off in September (yipee ) they have been great for getting rid of the main problem, but I am soo hungry all the time! when I eat, I think about what im going to eat next... all I want is food and its so hard not to give in. I keep trying to explain it to people, but they think im crazy!! I am also riddled with huge spots on my face, neck and chest. my face is starting to fill out because ive gained weight.

I was also wondering if people have ever felt really shakey on them? I have a constant tremble on them, and its making work very hard.. I can mainly notice it in my hands as im normally pretty steady and im always shaking like a leaf..

Anyway, thanks for listening I dont feel as depressed now. lol

Hi christina!

Yes I am exactly the same on them! Shaking constantly. Also get terrible cramp in my hands and feet, and the big moon face.

I'm down to 5mg per day now, so hopefully they go soon getting worried though as I've lost my appetite again past few days so hopefully it isnt starting back up

 

[Alberta_sweetie]

I was on pred for 7 months, finally got off it mid June only to be told to go back on starting this Friday when I start remicade. But honestly I'm thinking prednisone is the only thing that works without killing me. Pentasa was mostly ineffective, but lets stay on it and add imuran. Oh wait the imuran is damaging your liver, lets change that to 6-mp. Oops sorry that's damaging your liver too. Lets stop that but continue pentasa. Wait what do you mean your liver enzymes are still rising with absolutely no drugs. Better start prednisone, hydrocortisone and remicade ASAP and don't forget to add an autoimmune liver specialist to your roster of drs. Also here's another MRI requisition and endoscope and colonoscopy for the 4th time in as many months. Pretty sure those are just gonna show more advanced disease since I haven't been medicated in a month. And just to sweeten the deal we will do an endoscopic ultrasound while we are at it. At this rate the only test I won't have had done this month is the enhanced CT(probably just jinxed myself on that one).

Rant over. Hopefully everyone else is doing better.

 

[AussieChick]

I was on pred for 7 months, finally got off it mid June only to be told to go back on starting this Friday when I start remicade. But honestly I'm thinking prednisone is the only thing that works without killing me. Pentasa was mostly ineffective, but lets stay on it and add imuran. Oh wait the imuran is damaging your liver, lets change that to 6-mp. Oops sorry that's damaging your liver too. Lets stop that but continue pentasa. Wait what do you mean your liver enzymes are still rising with absolutely no drugs. Better start prednisone, hydrocortisone and remicade ASAP and don't forget to add an autoimmune liver specialist to your roster of drs. Also here's another MRI requisition and endoscope and colonoscopy for the 4th time in as many months. Pretty sure those are just gonna show more advanced disease since I haven't been medicated in a month. And just to sweeten the deal we will do an endoscopic ultrasound while we are at it. At this rate the only test I won't have had done this month is the enhanced CT(probably just jinxed myself on that one).

Rant over. Hopefully everyone else is doing better.

I hear ya!! not gone through as much as you, but yep Pantasa, add imuran, up dose of imuran, different symptoms occurring now, get rid of pentasa. End up in hospital with an obstruction. Meanwhile been on Pred for 6 months, except 2 weeks. I don't know what's worse anymore, side effects from all the shitty drugs or the disease!!
I feel for you Alberta

 

[AussieChick]

Anyone else have horrible headaches on Pred. This time round I have had a headache on the right side of my head and behind my eye. I am tapering off and now at 17.5mg but the headaches haven't changed at all!!! Maybe it's the mix of Pred and Imuran..I don't know so confusing!!!

 

[Josephine]

Last 6 weeks of Prednisones then colonscope to comfirm where infammary has spread further in large intestines and new medication.

 

[Daboyn8]

I was on prednisone a lot when I was first diagnosed. It was almost like right when they got me off of prednisone, I got sick, and had to be put right back on it. At work, people wouldnt say anything to me, but from what I heard, people were saying stuff about my weight. Not like there was anything I could have done about it.

I was also on prednisone for senior pictures! Still love looking at the year book and seeing that.

But as much as the drug completely sucks, it does work. I was in a flare in high school, hadnt eaten in a few days, and I woke up early one morning to try and get ready for my last two high school baseball games I would ever play. I felt so bad, and decided to take the first dose of prednisone that I have been putting off, hoping to get better and wont have to be back on it. I took the pills, took an hour or two nap, woke up, and felt a lot better, and went out and played the double header. By far not my two best games ever, but I was happy that my Crohn's did not keep me off the field for my last games.