The Miserable Prednisonites Club

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I've been on and off prednisone for over a year I'm experience the weight gain really bad water weight itchy skin from skin stretching bad stretch marks dry scalp moon face and acne can't sleep mood swings very irritable hopefully be off by end of this month but can't wait to see if it works every time I've tried to get off of it I've gotten so sick and ended up in the hospital
 
duh panda said:
Working toward starting to taper off Pred. (Finally) after 6 months. on a dose of 40mg and a year on and off of it to manage extra-intestinal inflammation before that. Dr.'s orders are to lower by 10mg every 5 days, which I find absurd from past experiences of trying to taper and failing to complete it due to experiencing severe withdrawal effects. Maybe i'm just being overly-cautious, but I'm going to give the 10mg a shot at least until dropping to 20mg and taper every 7 days instead of 5 and see where I sit at that point. Really really slow has always been most successful and I hate yo-yo-ing on pred.

That said, it's been some time since working to taper and if I remember correctly it a lot of the side effects also mirror crohn's symptoms (e.g. abdominal pain, etc.). Anyone else currently tapering? If so, at what rate? What do you consider your normal during a taper? I know it varies for everyone - and from each round it seems - but wouldn't mind hearing others' thoughts/ experiences!
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I tapered very quickly last time, but I did spend a couple of days feeling absolutely wiped out; no energy, walking made my legs ache, I felt a bit sick and like I had a bad cold. I think it's like many meds where there's a tolerance or addiction factor: you either do it quick, feel lousy but get it over with, or draw it out, making it more comfortable.
 
I think I may be getting another prednisone side effect: I think I feel more anxiety than usual. I was also awake a bit in the night, not real insomnia though.
 
Definitely getting hot flushes, mainly in the evening. I remember this from last time. And also a tremor, which I had last time too. My right hand is already so shaky from recovering from an episode of paralysis and weakness, so you can imagine how clumsy I am with it at present. But possibly I'm starting to get that cool feeling, a bit high and a fake boost in mood, which may not be a bad thing.
 
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I started this round of prednisone on October 7th and the dose was increased October 12th. I'm worry I'm not seeing much effect yet. Things are definitely not worse, and possibly there's been some improvement, but I expect pretty obvious benefits from prednisone. I'm seeing a doctor next week and having some tests done, so maybe I'll know more after that about what's going on inside.
 
UnXmas said:
I started this round of prednisone on October 7th and the dose was increased October 12th. I'm worry I'm not seeing much effect yet. Things are definitely not worse, and possibly there's been some improvement, but I expect pretty obvious benefits from prednisone. I'm seeing a doctor next week and having some tests done, so maybe I'll know more after that about what's going on inside.
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I'm attempting to taper off the 40mg i've been on for the past 6 months after starting to see a response on Entyvio. I never saw a huge improvement from Prednisone this time around like I had in the past. Basically kept upping the dose until I wasn't seeing blood and held it there. Dr. was willing to keep uppinng the dose but I didn't want to. I don't view steroids as a "fix all" or maintenance drug and wanted to remain on the lowest dose that allowed me to continue functioning/ didn't put me at risk - although that's always a fine line to walk.

I'll drop down to 20mg on Tuesday. Saw tremors, night sweats, pred. rage/ swings, when starting it up. Acne and moon face to the point of being noticeable to others around 3 month mark. Seeing tremors again as I'm coming off of it along with mild headaches.

Before this flare/ in the past I always felt very hungry and used Pred. to gain weight back; one of the main positives to taking it in my mind. This time around no weight gain until getting on a more viable treatment plan (Entyvio), a diet plan where I eat every 2-3 hours and involving lots of protein smoothies, and weight training to gain back muscle mass I'd lost. Also never saw a huge change in stools beyond a lack of visible/ fresh blood. That said, my insides were/ are a mess right now - ulcers in stomach, small and large bowel, with completely strictured ileum; a lot to be brought back under control and then healed.

Wishing you all the best as you find out more of what's going on for you, and I hope the Prednisone starts doing a bit more on the positive side of things as well! Sometimes I just don't think it's effects are as obvious as we hope or would like them to be - whether that's good or bad is all up to the patient and what they're wanting out of their treatment.
 
I hope someone in this forum can help me or maybe send me in the correct direction. I have recently experienced my first flare up, within 7 months I was sicker than I had ever been and lost 70lbs. I had one horrible doctor but finally found one that has helped me to get on the right track. He started me on a prednisone taper 40mgs for 1 month, 30mgs for 2 weeks, 20mgs for 2 weeks and then 10mg for 1 month. I have now been completely off the prednisone for 1 week, I'm not having Crohn's symptoms but I am having what I assume are terrible withdrawals from the prednisone. The most alarming symptom is the chest pain. It is right in the middle and gets worse right after I sit or lay down, like my heart is pounding through my chest, I'll experience shortness of breath and sometimes the pain is so bad it moves up into my jaws. I have went through a much shorter taper before in the past that only lasted a couple of weeks and I recall having some of these similar symptoms, I saw my GP at that time who ordered a heart echo and chest X-ray both of which came back normal. Whereas the pain was very similar to what I'm feeling now it is much more severe this time around. I have a call in to my doctor now, just waiting for the return call but I was curious if any of you have experienced anything similar?
 
Jessica, I haven't personally experienced that. I'm sorry no one has responded to this sooner. Have you seen a doctor yet? What did they say?
 
I experience these symptoms with prednisone. It is due to inflammation of oesophagus and acid reflux oesophagitis. Nexium 40 mg is very helpful
 
Starting to taper prednisone now, and since on the lower dose I've stopped waking at 5:00am. Back to my usual 7:30am now.
 
Thanks. Yesterday I felt a bit shaky/sick, and my legs have been aching a bit, and I think this is from withdrawal as I had similar symptoms last time I tapered from prednisone, but they're very mild. I'll be glad to get off it before I start growing hair on my face like last time.
 
Just found this.

Not on prednisone on a regular basis but I don't tolerate it well. Prednisone makes my muscles lose their definition. I wear a hearing aid and at certain doses the earmold doesn't fit the ear as well and my aid feeds back. Very annoying. Have to be careful not to overeat or I gain weight.

Also my eyesight gets worse, have to wear corrective lenses. When I was in the hospital for intestinal blockage they had pumped 125mg of IV steroids 4x a day and my vision became REALLY blurry. I needed 5 weeks to regain my strength and stability, I think that was because of the steroids.
 
Last February , I had to take a huge amount of steroids. I deloped severe muscle weakness and blurring of vision. Both improved but not to normal as im still on low dose. And similar to realMC, I needed eyeglasses
 
Will be attempting to taper off Pred. once more in the upcoming days. Wish me luck! seems like every time the dose drops under 20mg all goes to hell. Will be taking it slow dropping by 5mg. Beyond ready to watch the moon face and "beard" of acne go away!

It hasn't been doing much in the way of actually helping improve the disease, just seems to roughly hold things in place, so hopefully I can get off of it in the next few weeks and find a better maintenance option to work with Entyvio.
 
I noticed you were taking Entyvio. My gastro doctor gave me information
about Entyvio, but I have not decided on whether to try it. How is it working
for you, or have you just started taking it? Remicade did not work for me....
had to stop because could not tolerate the infusions. I tried Cimzia without
any success. It would be good to hear from anyone using Entyvio.

Good luck with your tapering.
 
Jackie Aba said:
I noticed you were taking Entyvio. My gastro doctor gave me information
about Entyvio, but I have not decided on whether to try it. How is it working
for you, or have you just started taking it? Remicade did not work for me....
had to stop because could not tolerate the infusions. I tried Cimzia without
any success. It would be good to hear from anyone using Entyvio.

Good luck with your tapering.
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Thanks for the luck! :)

I started Entyvio as a last ditch effort after officially failing and being pulled off Humira last December due to repeat infections, failing cimzia at the start of summer after no response what so ever and having been on and off Remicade multiple times since point of diagnosis for various reasons - didn't seem worth it to try going back to it. It took a while to get approved and get going but I'm now 3 weeks out from the 3rd loading dose and just had a scope done on Tues. to see where things were.

Large bowel looks improved, there is still a ways to go but this is the first time in years I've felt like any treatment option is doing more then just holding symptoms enough to keep me out of the hospital. The last couple weeks I've been fighting off an infection so seemed iffy for a bit but the visual improvements from the scope and slow return of energy and hunger after catching and treating the infection leads me to think that overall it's still working.. That said, small bowel remains a complete mess so we are discussing adding a maintenance drug into the mix to target that location, Dr. is mulling over the options with the other GI's in her practice and we'll go from there.

The nurses at the infusion clinic I go to mentioned they've started seeing positive results overall in those on Entyvio. The loading doses felt like a rollar coaster but seems to be leveling off as I move toward the regular dosing at every 8 weeks. I certainly think it's worth looking into if TNF-blockers aren't getting an adequate response, especially if the disease is primarily located in the large bowel.

If you haven't checked it out already I highly suggest reading the thread for Entyvio on here. Most seem to be doing fairly well with it, with a few reactions here and there to give a wider scope of things.
 
I hate Pred! I've been on it since June, started at 60mg while in hospital, tapered to 10 before my op in September which showed a lot more inflammation than anticipated, so back to 40mg.
I'm now back down to 10mg and tapering very carefully at 2.5mg per 2 weeks as last time I was on it, 20 years ago, I found that if I didn't the disease would come right back.
That time I was on it for a year and gained 20 kilo's and had a terrible case of moonface among other things.
This time I was forewarned and have managed not to gain any weight so far!
The moonface isn't as bad a last time but the aggression, inability to sleep, brainfog etc has been terrible. Luckily I found Amitriptyline which has helped enormously with these last symptoms.

I'm starting Pentasa today as I'm oversensitive Azathioprine and I'm hoping that will be enough to keep inflammation at bay and I'll be able to get off the pred soon, fingers crossed!
 
Super excited, got a game plan in place to taper off these last 10mg of pred.

bumping down to 5 leaves me wanting to go to bed around dinner time, body hurts like hell, and I don't feel hungry... ever which initially resulted in some much unwanted weight loss. But eating based on alarms and taking it easy for a bit is an easy trade if it results in success.

Due to being on it for so long this time around, and difficulty with the entire tapering process up until this point, I'm looking at 3 months to get off it completely. 1 month at 5 mg, 1 at 5mg every other day, and 1 at 2.5 mg every other day. Fingers crossed my adrenals aren't going to play dead and be all lazy!
 
Good luck to you Duh Panda!
I'm still not off it, Pentasa did nothing so I had to go back up to 15mg, now on MTX which I'm not sure about yet but fed up with Pred so down to 2.5 as of today. One more week of that and then it's over Rover for the pred, yay!

In the meantime my GI is trying to get me approved for Humira, hopefully that will do the trick.
 
So close! Glad to hear things are going somewhere for ya!

I started MTX back in Nov. to work off of pred. and the difference is becoming very noticeable the last couple weeks. It has its trade offs like everything else, but I for one will take it!

Best of luck getting approved for Humira. Out of all the TNF blockers that I saw the most benefit while on that one. I hope you get many years - decades even - of success!
 
I hate hate hate Pred. Gave me terrible moon face and destroyed my confidence. Although all of the moon face is gone, my face never looked the same. :(
 
Just when I liked the shape of my face, it is now chubby cheeks and I can't sleep and all that stuff. Newly diagnosed and although I feel sooo much better, I hate the side effects. So what is new. oh well.
 
Hi

Started Prednisone almost 7 months ago (65mg) and it was mirical drug for me. I had been in a chronic flare for 20 years, and doctors just saying it was chronic IBS ( despite requiring surgery for damage it caused - 1995 Open Nissen Fundoplication), and two GI specialists told me no medication could help me, especially Pred, as it has no effect on IBS. I refused to accept this, and my private Dr agreed to test me on Pred. It saved my life, as I had stopped eating and given up hope. Death would have been better than the physical hell I had. Three days after starting Pred, i was symptom free. I do have some bad side effects, insomnia, mood swings, skin that tears easily, diesnt heal, as well as a siezure where I bit my tongue badly. However while on Pred I am no longer ill, no longer lactose or fructose intolletant, pain has gone ( still feel the strictures from abdo surgery), gained a healthy wright ( was SO skinny), my boils have stopped and diaarohea under control. Problem is, that when I drop below 30mg Pred, I get sick again, and as u know, there is risk of serious side effects at this level. Damned if I do, damned if I don't. Too often a chronic illness can cause us to live in the past, or fear of the future. Today I want to live in the moment, today, this second, and celebrate my wellness, even if it lasts only till sunset :0)
 
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Rev Rog said:
Hi

Started Prednisone almost 7 months ago (65mg) and it was mirical drug for me. I had been in an chronic flare for 40 years, and doctors just saying it was IBS. I do have some bad side effects, insomnia and mood swings, as well as a siezure where I bit my tongue badly. However while on Pred I am no longer ill, no longer lactose or fructose intolletant, pain has gone ( still feel the strictures from abdo surgery), gained a healthy wright ( was SOskunny), my boils have stopped and diaarohea under control. Problem is, that when I drop below 30mg Pred, I get sick again, and as u know, there is risk of serious side effects at this level. Damned if I do, damned if I don't. Too often a chronic illness can cause us to live in the past, or fear of the future. Today I want to live in the moment, today, this second, and celebrate my wellness, even if it lasts only till sunset :0)
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Are you looking into or on any long-term maintenance medications? Prednisone is wonderful for getting flares under control but in my experience the dependency that can develop and the manner in which it often masks some symptoms while treating within limitations can be damaging.

This past year I was on prednisone while working to find a more long term treatment - as I felt better and better the side effects such as moon face, acne, mood swings etc. really started to cause more damage out weighting the benefits.

Glad you have not only seen relief from symptoms but improvement in quality of life and so very nice to get see positivity regarding prednisone on here as it truly can be wonderful.
 
Yeah, just waiting for Pill Cam, then regardless of results, will trial other corticos. I dropped to 29mg yesterday ( 1 mg per 5 days), and had terrible relapse. Pain, diaarohea, nausia, colic and 115bpm at rest. Had to take 38 Loperimide tabs, 65 mg Coedine, AntiNause and Zoplocline to cope. Back on 30mg Pred today and recovering. U r right, Pred only removes symptom. I/we will always be sick. My wife gets frustrated, saying "Same/Different"., meaning still sick, just different symptoms. Just found out she (Debbie) requires brain surgery for repair to Trigeminal Facial nerve in next 4 months :0(
 
Best of luck to both you and your wife and you deal with and face the upcoming trials. Life can sure provide one hell of a ride but I think it's the people who stand by you (and you by them) to witness it all - regardless of how good or bad - that makes it pretty great to experience.
 
Does anyone get cramps in their feet? I do, just sitting watching tv and then I have to get up and walk on them. Is it related to the dread Pred?
 
Yes, I have had intimitant cramps in the arch of my feet. Very sore when it happens!

I also just received my appointment notice to see my GI Specialist on March 13th, just over a month away.

I am scared.

My last two appointments with GI Specialists have not gone well. When I was last admitted (2013) to A&E for partial bowel blockage, and underwent a whole raft of tests, the GI concluded I have IBS - D prominant, and that I just have to accept that I will live a horrible life. My next (private) GI Specialist confirmed that diagnosis and said there is nothing more medicine can do for me.

THEN my private GP gave me Prednisone and for the last (almost) seven months I have been symptom free (after chronic for over 20 years), and his communication with my specialist indicated that because of my positive reaction to Pred, that it 'must' be IBD.

However, in NZ our GI Specialist's are relatively small in number, and they work as a team, consulting with one another.

I am afraid that the GI Specialist I see, is not one that I have seen before, and he will not allow me to continue being treated with a 'safer' medication targeted for inflammation, as Prednisone does.

And I am sick, absolutely sick of being told I have IBS!

From my understanding, IBS is a functional syndrome that affects the physical peristalsis of the bowel, and generally does not result in the chronic/acute symptoms/surgery that I have lived with for 20 years since surgery/all my life. And that Prednisone does not 'work' on IBS?

Prednisone has no effect upon peristalsis, but upon inflammation and the body's immune system???

Feeling a bit defeated :0(
 
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LOL. Just realized this is "The Miserable Prednisonites Club"! So, what I hate about Prednisone is the horrible mood swings, terrible insomnia that has me addicted to Zopiclone, the 'seizure' that nearly bit my tongue off, skin that breaks easily and takes ages to heal, adrenalin bursts that make me want to scream and scratch everyone's eyes out, and the other horrible stuff that I can't yet see inside my body and bones :0)
 
If I were you, and I'm not, I would look up everything I could find on the difference between IBD and IBS and go armed with copies of good stuff and hopefully someone will pay attention. I don't know if you can still be calm about it with your drs. I'm not good at remaining calm! lol. I think I've had crohn's for a long time, but drs. just told me I needed fiber. My biggest Pred problem at the moment is lack of sleep coupled with the energizer bunny who better not get in my way!

I'll be praying for your dr. visit. Marlena
 
Grr got so so very close, but prednisone certainly seems to have a place in my life and battle with Crohn's. Been sliding downhill for some time but seem to be sitting in the ditch last few weeks so it's back up to 20mg to try to find a bit of stable footing and keep out of the ER while trying to determine cause of some fluid build-up in the abdominal cavity - a challenge due to surrounding disease/ inflammation. Hoping to bump inflammation down enough in the tissues to be able to confidently determine it's not from an abscess, permeation, etc. while continuing to treat with antibiotics for potential of a stubborn infection.

As much as I was overjoyed to finally be recognizing myself in the mirror again, and as my mom liked to point out - being able to see my nose in its entirety, the higher dose is already noticeable and providing a bit of a relief as extra-intestinal inflammation in my feet and skin was making it difficult to stand/ walk.

Today I can once more wiggle my toes. It's a start.

I'll take being able to walk and staying out of the ER in exchange for chipmunk cheeks, acne, munchies, and insomnia any day. Especially now having knowledge that the only part of me that doesn't seem to tolerate tapering is the crohn's - adrenals might be slow but knowing they kick back in like they should around the 5mg and under mark is a relief. That hurdle is one of my concerns whenever on prednisone for extended periods of time.

We'll see if I'll still be thinking that straight around 4 in the morning after unsuccessfully trying to sleep.
 
I'm SO SORRY, I'm NOT sure how this works yet. I had THE most miserable experience with an ER visit yesterday!!!!!!!! Here's what I wrote to the hospital!!

"I am writing regarding an ER visit that I had on 2/19/15. I have Crohn's Disease, am not on any maintenance meds, and therefore, rely on pain relievers, prescribed to me by my GI at the Mayo Clinic, where I have been receiving care for 4 years. My Dr. at the Mayo is one of the best, and will not experiment with drugs until he knows what is going on. I get internal bleeds and am in constant pain. I was horrified at the Dr. that was on staff in the ER around noon. I have always gone to Monticello, have recently had a stay in St. Cloud, and since I live in Buffalo, have also gone to the closer Buffalo ER. Yesterday I went to the Monticello hospital, because they seem to keep better track of my history. The Dr. on staff (Dr. Simons) insinuated that I was lying about my pain, and jumping hospitals. How does he know what my pain threshold is? He basically, in not so many terms, referred to me as a junkie. I even called him out on it, and of course he denied it. I'm sick about this. He told me I was "exaggerating" my pain. How would HE know what my tolerance was, and since a SPECIALIST almost twice his age, at the Mayo clinic has been prescribing me nothing but pain relievers until we can find out where my internal bleeding is coming from, I was sick that this Dr. in Monticello basically called me a liar! I have never been treated so poorly at your clinic (which I've delivered 2 of my children) or hospital, and am VERY displeased with how HE treated me. He also said, "There is nothing wrong with anything in your blood" yet prescribed me Prednisone? Isn't that for inflammation? For the record, I did NOT fill his pain relief Rx, because he claimed to have "Told all the hospitals about me"? I'm sure this is not a big deal in the realm of ER doctors, but I will NEVER recommend your hospital after such a horrible experience. I understand it is policy to keep track of narcotics, however I have a lot of faith my Dr. at the Mayo Clinic, and he has been very up-front with the risks associated with addiction. I even told the ER Dr that I can stop Narcotics without side effects, yet he still proceeded to prescribe them. I know nothing will come of this, nor do I care if it doesn't, but how DARE he say the things he said!! I will tell everyone (and unfortunately, I have a lot of friends and relatives in the near area), what a humiliating experience I had. I pray he never ends up with Crohn's, and someone treats him that way, as a junkie and a liar. God bless.[/I"

I am FURIOUS! How can a Dr. Do that! Overide a GI at the Mayo, "tattle" on me? I can't find the source of my bleeding so my GI doesn't know how to treat me. I've had every procedure out there and so he keeps me on pain meds so I can work! I am a single Mom of 3, working full time, and narcotics literally don't affect me---if anything, they make me nauseaous!! Do you guys think I did the right thing?? [/I]
 
Yes, indeedy. some doctors are so arrogant, rude and judgmental. They should have their licenses yanked. I used to work emergency services for mental health and I know whereof I speak. I wrote many letters about one doctor until he was investigated.

You need to follow this up by a long chat with your regular doctor and see if he will send a letter around in your defense. i am so very, very sorry this happened to you.
 
I'm sorry you were treated like that. I've had to make formal complaints before. I hope you won't mind if I make some suggestions about your letter, if you haven't sent it yet (or if you already have, you can always send another). Of course I can't say for certain what the best way to word a complaint letter is, and you may be very satisfied with what you've written, and you may well be right. In which case, feel free to ignore my suggestions. :) But having spent so much time making complaints before, I'll pass on what I've learned, should you wish to use it.

I would suggest making it a lot shorter; cut out everything except the basic point of your complaint - that a doctor wrongly accused you of drug-seeking.

I know how you instinctively feel you want to tell them all the background, all the details that made this experience particularly bad - why you went to that hospital, how good your GI is, where you had your children, etc.

But it is usually far more effective to just keep it to the very basic point. The doctor accused you of being a junkie. That's it. That's an unacceptable thing to do, regardless of the specifics of your situation. He shouldn't do that to anyone. Doctors have to keep in mind the possibility that someone is drug-seeking, but he went beyond what is reasonable, and it affected the care you received.

You may want to consider whether you want action to be taken regarding the doctor's claim that he has warned other hospitals about you. That could significantly affect your future treatment if it isn't rectified by the hospitals being informed his warnings were not justified. I would seriously consider making a formal complaint about this. See if you can find a patient advocacy group, or any doctor/patient liaison workers at the hospital to find out how to handle this. I'm not familiar with the healthcare system where you are, but if you search the hospital website there should be guidance for patients about how to complain and who they can contact for advice.
 
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Today, my mom found a picture from when I was 16 right after diagnosis about mid-way through developing the most prominent moon face I have experienced from prednisone. Certainly puts now in perspective! As much as I struggled to look at those photos for years afterward, now I can appreciate them.

Hope everyone's having a good Monday. And if it was a rough, pred. fueled night like my own you're able to get up and out, enjoy a bit of fresh air, and keep putting one foot in front of the other.
 
Here's to foot after foot and enjoying the world around. i found in a very tough time that finding enjoyment in small things made my outlook better. It also helped to look at the North Star every night and realize that if God could keep the universe perking along, He could take care of me and I'd make it through one more day.
 
duh panda said:
And if it was a rough, pred. fueled night like my own you're able to get up and out, enjoy a bit of fresh air, and keep putting one foot in front of the other.
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I remember those nights. I've just been looking for an appropriate smilie to represent them, but can't seem to find one that seems right. Maybe this: :voodoo: I don't know who or what exactly I felt like voodoo stabbing when awake all night on prednisone, but I'm sure that's one of the things I felt like doing. Thank goodness for sleeping pills.

I hope you got some fresh air, duh panda, and have had a better night.
 
My everyday doctor is also a Crohnie and we had a good commiseration/bitch session about it, especially the miserable pred! She's such a human being. I love her to bits.
 
Hi hello! Ive been reading through for a couple of days and finally worked up the courage to join!

Currently can't sleep, suffering a prednisone attack of Night sweats! I was down to 15mg then I flared so it's back up to 30, which brought on instant chub-cheeks again. Sigh!

I'm wondering if anyone else experiences neck pain? When I'm on this dose Ive noticed my neck (back of/base of skull too) is tender to the touch and Stiff/sore. Does anyone know why?

Thank you in advance :)
 
Hi Aiyale, sorry you're suffering on prednisone. Sleeping meds saved my sanity when I was on prednisone. How long have you been on prednisone for, and were you ever on a higher dose than 30? Prednisone can cause your muscles to waste, but you usually have to be on it months for it to be noticeable, and I wouldn't have thought it would affect your neck first; towards the end of my longest course of prednisone, my legs got weak and they'd ache while I was walking. So muscle wasting doesn't sound like it would be the cause of your pain, but I don't know of any other prednisone side effect that does. It can cause bone problems, but they are very long term side effects and wouldn't come and go according to how much you're taking. Are you sure it's related to pred? Did your neck ache when you were on a higher dose before?
 
UnXmas said:
Hi Aiyale, sorry you're suffering on prednisone. Sleeping meds saved my sanity when I was on prednisone. How long have you been on prednisone for, and were you ever on a higher dose than 30? Prednisone can cause your muscles to waste, but you usually have to be on it months for it to be noticeable, and I wouldn't have thought it would affect your neck first; towards the end of my longest course of prednisone, my legs got weak and they'd ache while I was walking. So muscle wasting doesn't sound like it would be the cause of your pain, but I don't know of any other prednisone side effect that does. It can cause bone problems, but they are very long term side effects and wouldn't come and go according to how much you're taking. Are you sure it's related to pred? Did your neck ache when you were on a higher dose before?
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Hi!
I haven't been on it for very long, I started 40mg on Feb 6th when I was released from the hospital, and was on a 5mg taper. I got down to 15 and now it's back up to 30 for a week then I will start a 10 mg taper.
I did notice that my neck hurt before, but it went away once I dropped below 30.
I suspect it has something to do with my psuedotumor cerebri, I was diagnosed with it when I was 14 but have been in "remission" since I was 16 (I'm 22 now) I read that pred can cause PTC but in my case I think it might be causing a flare, which would explain the tenderness in my neck. I was just curious to see if anyone else experienced it or if it something I should be concerned about? Fingers crossed it goes away when I drop to 20mg! :ysmile:
 
I get pretty bad tension headaches when tapering pred. Have to usually go really really slowly especially when dropping under 15mg. When the dose levels back out (either up or down) they have a tendency to lessen after a week to 10 days.

It's not like a usual tension or stress headache, but the pain is very localized and tender to the lower skull/ neck/ shoulders. I've never been worried about it since headaches tend to come with the prednisone package for me, but certainly worth mentioning to your doc. since it sounds like there's a possibility of something more.
 
Hi Team
I'm feeling a bit apologetic for my last post(s) about 'loving' Prednisone, especially knowing how horrible it can be for so many :0( Well, having started on 65mg 9 months ago, and unable to drop below 30mg - as all my symptoms return below this amount, I've just been given the orders to reduce by 5mg every 3 weeks until ti get to 10mg, and then reduce 1mg every 3 weeks after that. Unfortunately I've been having seizures, and are not allowed to drive until they stop. Also, having Pill Cam in 3 weeks, then endoscopy and probably laparascopic biopsies of small bowel. Tomorrow (NZ time) I am officiating at my son's wedding, and then start the 'raft' of tests and diagnostic procedures. Not looking forward to it, as I have to come of all meds so that I am in a full flare. Hard to do, as my last flare lasted over 20 years and almost killed me, however, the last 9 months of remission have been a blessing :0)
 
First diagnosed with Crohn's, then Crohns/Colitis. Tried a couple of biologics but didn't work. My drugs now are LDN and 2 1/2 mg. prednisone daily. Other things I take are
Align probiotics, oreganol P73 drops, marshmallow root tincture, floravital iron & herb supplement, aloe liquid, no gluten, only breads and desserts made from almond flour, no processed foods, organic chicken, veggies, and fruit, no dairy, After close to 10 years of chronic watery stool, I am having my first real remission with normal stool only once or twice a day. Funny, but the only thing I can recall adding is about a half cup of unsalted walnuts, cashews, sunflower seeds, and slivered almonds every day. That is so strange! Now I am successfully eating salads and other veggies that once caused real problems.

Is anyone taking less that 2 1/2 mg daily prednisoe dose and keeping Crohns/Colitis
under control? Is it possible that nutrients in nuts & seeds helped or was this just some
weird remission after 8 tough years of unrelenting Crohns/Colitis.
 
After 5 months of pred free joy I'm back on it, ugh. I am hoping for a super short 2 week course but who knows. Ugh.
 
I'm right there with you. After trying to taper *again* I ended up back in the hospital where it was 40mg drip, 4x a day! I thought I was going to lose my mind. I'm out now and just dropped to 35mg a day, and after a breakdown with my doctor got a rx for xanax to help me sleep at night. (Even with that, I'm only getting about 4 hours. :()

I also think pred really messes with my veins, all of my IV's kept blowing out in record time and I was a really hard stick (usually I'm not.) Is that common?
 
I'm currently on prednisone and we have a love/hate relationship!!!

I was on it for several months when first diagnosed last October...got the ridiculous moon face (and a small mustache...gross). They tapered me too quickly and I went into a slight addisonian crisis...could barely function I was so lethargic. So now I'm BACK on prednisone doing a 1 mg taper every week. Luckily my moon face has not returned (but the excessive hair has...I HATE it).

But my biggest issue is the crazy mood swings and irritability and anxiety. I'm starting to panic that this will last forever.

Question for others...did anyone go on anti-anxiety medication because of the irritability caused by prednisone? I'm wondering if I should talk with my doctor...its really bad. I'm screaming at my kids and feel mad all the time.

But, like others, it helped me feel immensely better...so I do appreciate that.
 
Love/ hate seems to the general consensus with Prednisone!

Haven't ever tried anti-anxiety meds while on Prednisone primarily out of pride more then lack of need. After years on and off of Prednisone I finally sucked it up (Okay... so my mom really pushed but it ultimately did seem like a good idea) and began meeting with a psychiatrist who focused on chronic illness, medication management, etc. for a couple months to learn how to essentially function despite medications, disease, and everything that comes with it. What I'm getting at is there are options you can pursue so the Prednisone beasties don't rule life.

One non-medical person's advice to another - talk about it with your doctor. Chronic disease in general can complicate relationships familial or otherwise on both ends, no reason to add more fuel to the fire by letting side-effects go unmentioned, unmonitored, or unmanaged. Often, doing what it takes to get to a state of well-being again involves looking at it all - not just the meds you take to treat the immediate disease symptoms but how those too might be affecting your quality of life.
 
edentenley said:
But my biggest issue is the crazy mood swings and irritability and anxiety. I'm starting to panic that this will last forever.

Question for others...did anyone go on anti-anxiety medication because of the irritability caused by prednisone? I'm wondering if I should talk with my doctor...its really bad. I'm screaming at my kids and feel mad all the time.
Click to expand...

I started taking amitriptyline to deal with the insomnia and restlessness. It worked almost perfectly.
 
I haven't had the anti-anxiety meds, but I have read on the forum that there are those who do and it really helped. I am sort of ok in that regard, but holding on to my patience has never been a strength and now with this and an Alzheimer's husband and a diabetic cat, I spend a lot of time talking myself into being decent. Good luck and hang in there.
 
Thanks for the input! My family is noticing my irritability....makes me feel bad. I think I will talk to my doctor and explore my options.
 
edentenley said:
Thanks for the input! My family is noticing my irritability....makes me feel bad. I think I will talk to my doctor and explore my options.
Click to expand...

Stay strong. It can be very difficult, but won't last forever :0)

I take 150mg Amytrip and 150mg Quetapine for other mental health issues I have, they seem to work (most of the time). Just started Sodium Valproate for Epilespy (possibly caused by the Pred I've been on for the last 9 months).

Life really can suck sometimes :0(

Just got back from an Easter Camp (5,000 youth from around North Island of NZ) and one of the 'main' speakers was going on about God healing everyone if they just have enough faith!

(I've been a pastor for last 15 years/degree in theology), and I just wanted to tell that speaker to start living in the 'real' world.

Hope is important, and faith too, but not blind faith.

Stay strong, and hope for a brighter future :0)
 
Dear Ron Rog, I am so sorry about the epilepsy - my husband has that as well, now under control. I must warn you, it can take quite a long time to get just the right meds and just the right dose to balance seizures with side effects - as if we didn't have enough already. I so agree with, having been a pastor's wife and lay pastor for years. God's healing is at God's good pleasure and sometimes it happens zippy and sometimes not. Trust in God's overwhelming love no matter what is what matters. Believe, I know.
 
Hello. My name is Aly. I'm kind of new here. I just started prednisone AGAIN. I was on it for 7 months. Weaned off and was doing ok until now. It quickly got out of hand again so here I am. I instantly have insomnia, anxiety, sensitive teeth, body pain etc etc I'm glad to meet some people who can relate
 
Aw rats, bummer. I am weaning by 2 mgs this time as last time everything just started up again. Are you taking anything for the insomnia?
 
Marlena said:
Aw rats, bummer. I am weaning by 2 mgs this time as last time everything just started up again. Are you taking anything for the insomnia?
Click to expand...

No I'm not. I don't really like to mess with sleeping pills. I take Ativan for anxiety and that helps some b
 
Insomnia is the absolute worst :( And on the nights where I actually am tired, my bowels keep me up running to the bathroom anyways!

I just noticed a new symptom and I'm not sure if it is a side effect of the pred. or the Humira. There are now spots on my face, similar in coloring to freckles but there are about 50 of them that have appeared over the last week. They seem to be localized to my cheek bones and my nose. Does anyone else have these?? (I'm trying to stay calm but I have REALLY fair skin and these spots are very noticeable! I've tried to cover them up to no avail.:shifty:)


Note: I've been on 40 mg of Prednisone since Feb 2nd...
 
Aiyale said:
Insomnia is the absolute worst :( And on the nights where I actually am tired, my bowels keep me up running to the bathroom anyways!

I just noticed a new symptom and I'm not sure if it is a side effect of the pred. or the Humira. There are now spots on my face, similar in coloring to freckles but there are about 50 of them that have appeared over the last week. They seem to be localized to my cheek bones and my nose. Does anyone else have these?? (I'm trying to stay calm but I have REALLY fair skin and these spots are very noticeable! I've tried to cover them up to no avail.:shifty:)


Note: I've been on 40 mg of Prednisone since Feb 2nd...
Click to expand...


I'm also on 40mg again. I've been having extreme anxiety now too. I absolutely hate this medicine.

The spots I would think may be caused by the Humira. I've never heard of prednisone causing that. But I don't know for sure.

By the way I'm also in Florida. It's nice to meet you. Where are u located? I'm on the treasure coast.
 
I'm still on Prednisone, I'm on 10 MG now, although I seem to do ok on 5 mg, but I can't get off of it for more than a month at a time, my doctors keep telling me I need to get off of it, but they're not giving me any alternatives, I actually don't have many side effects, just a little weight gain, mostly, I fed like a normal person on it, and thats a little scary.
 
Still on 50 mg since January! Can't believe it's been more than 5 months on such an high dose.
I hope my next treatment will work and that I will be able to get off the pred. I am having insomnia and the worst night sweats. But overall, I must say I am quite lucky, not having bad side effects as some of you..! :/
 
FrozenGirl, I really hope it's only because your body needs time to stabilize and that you will be doing better soon. And be able to taper even more til 0mg!!!
 
Back on prednisone for me, just as I finished college too! Was on 40 mg for a week, now down to 35mg. Taking it makes my heart race and makes me agitated for a couple hours... :(
 
OMG my appetite is out of control. I'm on 40mgs of prednisone after being on the intravenous version for 10 days in the hospital. I need to be gentle and SCD with my eating and I’m not succeeding right now. Will power? Where is it? I'm a human water balloon, thinking about food all the time. My weight can change five pounds in a day, up and down. I'm like a small woodland animal preparing for winter, constantly surveying the landscape for another nut. Where is my higher mental functioning?

I don't mean to be silly, but today I wish there was a surrogate 12-step program for this situation. I need to call my Prednisone sponsor. This volume eating is not helping. Ginger tea helps. mediation helps. Cleansing breath. I know it will get better.

The strangest thing is that I have been on prednisone multiple times in my life and had different reactions. 1st time: moon face, weight gain, grumpy; second time: euphoria, high energy and no weight gain; and now explosive weight gain, water retention, and squirrel brain. I always sweat. Attractive.

I just started Entivyo and I don't know how the prednisone taper is going to work. I'm grateful to be in better shape since starting the medication, but I am in an altered state of consciousness--with a Budda belly. So weird.
 
Hey everyone...I've been on prednisone many times most notably I was put on it at age 12 thru 18 and it made going to school rather fun,I got sick in 94 and I got down to 62lbs. I passed out in school was in the hospital for 5 weeks and then home for a month the steroids made me hungry all the time,got a fat face(as well as fat everything else I was 163lbs)and sweat uncontrollably a lot.I had to take the steroids 3 times a day(after breakfast,Lunch and dinner)so by the time of 1st period I'd be drenched,I had to sneak to the bathroom so nobody would see me taking my steroids after lunch and then I'd be drenched last period...so many lovely memories.
 
BlueSky said:
OMG my appetite is out of control. I'm on 40mgs of prednisone after being on the intravenous version for 10 days in the hospital. I need to be gentle and SCD with my eating and I’m not succeeding right now. Will power? Where is it? I'm a human water balloon, thinking about food all the time. My weight can change five pounds in a day, up and down. I'm like a small woodland animal preparing for winter, constantly surveying the landscape for another nut. Where is my higher mental functioning?

I don't mean to be silly, but today I wish there was a surrogate 12-step program for this situation. I need to call my Prednisone sponsor. This volume eating is not helping. Ginger tea helps. mediation helps. Cleansing breath. I know it will get better.

The strangest thing is that I have been on prednisone multiple times in my life and had different reactions. 1st time: moon face, weight gain, grumpy; second time: euphoria, high energy and no weight gain; and now explosive weight gain, water retention, and squirrel brain. I always sweat. Attractive.

I just started Entivyo and I don't know how the prednisone taper is going to work. I'm grateful to be in better shape since starting the medication, but I am in an altered state of consciousness--with a Budda belly. So weird.
Click to expand...


This. Is. Just. So. Spot. On. It sucks, but you highlighted it so well. Hoping you're able to find a bit of balance soon with this latest round of prednisone.
 
I HATE THIS DRUG. yes, it helps. But, now everytime I bump into something I get a bruise that takes forever to get rid of. I look like my husband, the sweetest of men is abusing me! and with short sleeves, aargh it's ugly. Oh well, thanks for listening, keep on keepin' on, that's the idea.
 
Has anyone tried Entocort or Budesonide as a replacement steroid? I have been on it for 17 days and it is not helping, the doc said it takes 2-3 weeks so I am trying to hang in there while having a horrible flareup that wakes me up at 4 am everymorning and I finally cave in a 730 am and take my methadone dose. Anyone take this long til it works if it does?
 
I'm on day 2 of Prednisolone 40mg a day, already got a red face and hot flush.

Is there anything I can do to help this?
 
rickpow said:
I'm on day 2 of Prednisolone 40mg a day, already got a red face and hot flush.

Is there anything I can do to help this?
Click to expand...

I used to keep ice pack handy when on prednisone. The hot flushes usually came in the evening or during the night. If it got really bad I'd stand under the shower for a minute, though obviously that's not always practical.
 
Off and on it from age 18. Currently on 10 mg a day for 3 months. No talk of taper just keep on giving it to me as non of the other drugs help. It's terrible for you but you have to take it. Its weakened my bones over the years, I've developed Osteoarthritis in my back had to have surgery on both knee's and have several other issues going on. Sleeplessness is a constant issue I hardly sleep at all, gaining weight, irritability you name it its on me from this drug.

Edit: Also was diagnosed with steroid induced Cataracts at the age of 40. I cant see anything without glasses now. Even the first line on the eye exam the big E is fuzzy! Prednizone is so much FUN! :thumright:
 
Last edited:
pjm - is the osteoarthritis caused by prednisone? Is it related to osteoporosis (which I know prednisone can contribute to). I have severe osteoporosis, due to a number of factors, but recently I was diagnosed with osteoarthritis as well (by an x ray) and have been wondering about whether there are links.
 
UnXmas said:
pjm - is the osteoarthritis caused by prednisone? Is it related to osteoporosis (which I know prednisone can contribute to). I have severe osteoporosis, due to a number of factors, but recently I was diagnosed with osteoarthritis as well (by an x ray) and have been wondering about whether there are links.
Click to expand...

A link that may help.

http://www.ehealthme.com/ds/prednisone/osteoarthritis

According to this study there is a increased chance of developing osteoarthritis with long term use of the drug. We all know it has impacts on the skeletal system. I would assume that anything that weakens it would defiantly contribute to the Arthritis. No non of the Dr's I have talked with yet have said it has caused it but then I'm just now beginning my journey with arthritis. I would discuss this with your rheumatologists and see what he thinks.
 
Thank you! And I'm so sorry you're having such awful side effects. Have you tried any meds to help you sleep or stabilise your mood? The one thing I found that was actually effective against pred side effects was amitriptyline to help me sleep and calm down. I know many people don't like treating side effects with more meds, but I found it the best option available.
 
did any of you face to much fat deposition in his back, belly, face, shoulders beacuse of prednizone? What did he/she did about it? I am mostly interested in the depositions in the belly if anybody had them, because what I conceive as fat depositions there, might be something else. Thanks
 
Hey Olmav,

My first round with Prednison I went from 83 lbs to 146 lbs. over the course of about 6 months. The med. certainly resulted in major adjustments regarding how/ where fat was stored in my body. Combined with the water retention (and a subtle finely fuzzy mustache and sideburns) there was a solid couple years where I think I looked more cartoon then human since while on it there was minimal muscle building/ fat that occurred with my legs.

I'd mention any concerns you have to your doc., but it does sound prednisone based to me.

As for what I did about the fat.. once the prednisone droped low enough and once the thyroid starts picking back up and producing I've always noticed things slowly start moving back toward more "normal" regarding where fat is stored. The moonface started going first followed by upper back/ shoulders and finally the belly. I always expected to look in the mirror and one day feel like I was seeing my old self but that never really happened - perhaps part was being a teen at the time but each time I run the prednisone gauntlet it seems like there's a period of acceptance after tapering completely over body changes that persist.

Since then I usually just get the moon face and softer around my middle but I haven't been on more then 50 mg in the last 5 years. When I start prednisone I know I ALWAYS get very unpredictable in the mood department and insomnia which often leads to mindless snacking on top of the pred. munchies. Over the years, I've found it helpful to switch to eating meals/ snacks based on alarms (7/ day). Doing so has certainly helped take the stress out of worrying about side effects since I know I'm eating smart and working to maintain a comfortable weight. This doesn't keep side-effects at bay, but I find it provides a bit of peace of mind that makes it easier to accept what it is in the moment and have the patience to wait and see how the chips fall once the prednisone is out of the picture once more.
 
thank you very much for the response. The problem is I got 3 autoimmune deseases and I am seeing 3-4 doctors all the time (endocr. opthalm., reumatologist, gastrenterol.) but nobody is "my" doctor, because they usually feel some of the symptoms are due to the "other" ilnesses. They try usually, but perhaps I am a compicated case -they prefer to face one inless at a time. (ME TOO, but cant help it) Thank you very much once more.
 
Ohh the joy of another sleepless night :/ I think I got 2 maybe 3 hours of off and on sleep last night. I can function on 3 hours constant sleep. Not well but it can be done, not to sure about this sleep a hour up get another 30 minutes up again this went on until I finally gave up and just got up. :/ Its go good thing I've nothing to do today as it probably would not get done :/ I feel a midday nap coming on today!
 
Marlena said:
Naps are the mainstay of life.
Click to expand...

Everyone told me I wouldn't be able to have the pleasure of taking naps after college. Boy were they wrong. I enjoy this one aspect and being able to tell people oh your tired and it's noon? Well I have the freedoms of retired folk 30 years earlier then the rest of you. Insomnia be damned, I just do things in a different time frame for now. Naps, leisurely reading, light exercise, learning life skills many don't have time for or make time for till later in life. I wouldn't hold onto crohns for these things but it's an ironic upside to it all, especially right now with the pred. It's leading me to become a very decent, organized and cost aware cook. And the late nights offers quite, uninterrupted hours to develop some writing.
 
This time around on prednisone I have been having to take sleeping pills every night. It's so weird to be so exhausted all the time and yet agitated as well. They started me on 20mg, then 30mg then jumped to 60mg after my endoscopy/colonoscopy results came back. It's going to take me over 8 weeks to get off of it this time around, and that's assuming the rest of these meds ever kick in and do anything. All things considered its not the worst experience I've ever had with prednisone. I'm just really discouraged. I just hate this drug. It's nice to know other people feel the same way though.
 
how long after ending a taper did you guys feel your energy return? Almost a week of freedom and ive dropped alot of the tightness of water weight (mainly thanks to water pills and Dandelion tea).

btw how long till all the shit goes away? Mainly the hump back, tummy is almost gone already. Body/skin are killing me and im a 21yr old with stretch marks wth?!

Advice for a first time taper-er anything you have is welcome!
 
First time off pred. I was around 17 and looked like I'd been hacked at with a knife all along the legs, hips and across the butt.

Took a couple years for the stretch marks and my skin in general to stop hurting completely, the marks themselves are not something that'll really go away depending on their size. Mine were a bright red/ angry looking for a long long while, I don't remember just how long, but at least a year and a half and another year or two of more pinkish. Now, almost 9 years later they're just a bit more pale then the rest of me (which is seriously saying something) and not something anyone notices despite them being an inch wide and up to 6/7 inches long in some places. Since then when on pred, where the marks are is where my skin hurts a bit more then usual as I drop or gain weight.

I really like blending aloe gel w/ coconut oil (can add a couple drops of essential oil for scent if you like) for the stretch marks... more soothing then any expensive creams I attempted, can be a bit greasy for daytime though if using an excess amount.
 
I'm trying to come off it again. I sure would like to be normal again and have my clothes fit. And a real face. Such a messed up drug.
 
Been holding 10 mg (almost comfortably) for going on 2 weeks now. Slowest taper/ attempting to taper of my life. going on.. 8 months? Maybe 9? I can't even remember when we initially started trying to get me off of it while playing with/ testing maintenance meds. over the last 2 years. 3rd time on remicade, fingers crossed it'll be 3rd time to successfully come completely off of pred.

Probably won't be tapering any further until after my 3rd remicade loading dose, but it's interesting to see the chipmunk cheeks going away.

I didn't realize just how much pred. gives me an energy boost. Even just a 5 mg. difference wrecks my days with a good 2 week adjustment period. The exhaustion is kicking my butt - if I dont lie down for a nap I find myself nodding off wherever I am and whatever I'm doing. And my naps often become more like full on sleeps unless I set multiple alarms to pull me back out of it.

Oddly enough, it's only since the lower dose that I've been managing to put ON weight, which has been much needed, and am seeing some muscle mass returning. Never thought prednisone could be the issue for why I was struggling so much to gain or hold weight and specifically muscle mass. But apparently it can deplete protein sources on top of everything else it does, wasting away muscle, which of course further compromises bones/ joints. etc. Prednisone - she's one mean bitch.

Getting super excited to be recognizing myself in the mirror again - not just a pair of twiggy legs and arms on a body with a soft, rounded belly yet jutting hip bones and an even softer rounded face with the tip of a nose and little eye peeking back at me.

I did go ahead and say screw it and buy clothes that fit regardless of knowing I'm likely to gain at least another 10 lbs if things keep improving which certainly has helped with getting back stronger positive body-image. I figure of all the things we worry about how our clothes feel/ fit should be the least of it. I was so sick of feeling sick because none of my clothes fit and were elastic waisted, safety pinned, or held up with belts. If I get that 10 lbs I'll go buy some more things that fit and store this latest round of clothes for when they're needed again.
 
I think its important to have clothes that fit, even when you know your size is likely to change. Sometimes you just need to be able to feel good about yourself. Good for you.
 
I lost muscle after a long time on pred too. I was already underweight, but with the pred it wasn't that I was just underweight, it made me so weak as well. Even walking was an effort for my legs sometimes.
 

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