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Kittee

Kittee

Joined
Feb 28, 2008
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519
I got the official word today.:yfrown:
My camera pill showed massive inflammation and ulceration in my small bowl, just past where the endoscope could not reach.

So I am supposed to start Prednisone tomorrow morning. 4 10mg tablets per morning for the first week...then 3.5 tablets...etc..etc.

I've never been on such a strong steroid for such a long period of time.
The doctor said to I would feel "Jittery" and perhaps not be able to sleep good for a few nights.

Can anyone else share their experiences with this? :confused2:
 
Good luck. I took prednisone way to long ago and don't remember much but I did have bad mood swings. Others will be able to tell you more.
 
Everyones reaction to prednisone is different but I did have difficulty sleeping, had night sweats, and weight gain. Others experience acne, additional facial hair, moodiness, and blurred vision.
 
My son - 11 years old - took it for a time last summer, after he was diagnosed with crohns.

It increased his appetite and he put on a quick 10 lbs, which he needed. He ended up with a lot more energy also.
 
Sorry you have been diagnosed with Crohn's, but glad you know what you have.

I hope the Prednisone helps out.

Dan
 
Well I lost 45lbs ...(happily.) I'm hoping to not gain weight. The Dr warned me to watch my appetite.
 
Congrats on the wanted weight loss. Your doctor is a lil silly (please don't take offense!). You can tell a patient all you want to "watch your appetite" but it isn't going to stop the insane and insatiable cravings. Don't worry though, it sounds like you will begin a taper soon after starting prednisone. Therefore, if you gain any weight it won't be too much before you start to come off the steroids and return to normal.

Sorry to hear you have crohn's but be glad the doctors got you figured out.
 
Oh I so did not want to hear that. Maybe I should suffer on for a few more months, lose 30 more lbs then start it =P
 
Well, that sucks - but at least you know now and can begin proper treatment.
I have been on prednisone 3 times, all starting at 40 mg, and have had very few problems with it, I rather like it actually. I have a huge appetite on it, which is great because I had almost none before I started. I have gained 27 pounds in 10 weeks (Wanted to though. Was really trying to for the first 15. The next 12 just kind of appeared. Be careful if you don't want to gain.) I was on 40 mg for 6 weeeks or so before I started the taper and I have 1 1/2 weeks to go. I also have a ton of energy. No problems sleeping, and no moon face. I do get acne from it, but it's mostly on my back, not my face. If pred wasn't so bad for your bones I might just stay on it for the energy. It makes my job much easier. My best side effect is that I'm warmer. I'm usually freezing all of the time, but on prednisone, I'm normal.

Is your doc going to put you on anything else besides prednisone? Usually people are on a maintenence drug too, I believe.
 
Not yet anyways, just the Prednisone. I mentioned the idea of not starting to my hubby and was like.. ."No way." So reckon I'm starting it in the AM. Hope it's a positive experience like yours MBH.

I'll just have to figure out some way to curb my appetite.
Chew on wood or something. *smile*

Hmm I am reading online now and the side effects listed for this are really bad. Do you guys think that perhaps something "lighter" could be prescribed?
 
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It's got a lot of bad sides because it's an atrocious medicine. I can't see how anyone would want to be on it but to each their own, I realize some have better experiences than others, but the way I see pred....:angry-banghead: :angry-banghead:

I'm glad My Butt Hurts has faired better with pred, some of us have not. I'd love to have avoided the acne, milia, sensitive skin, popping joints, sleeplessness, shakiness (which I jitter and it scares my gf), mood swings, depression, sensitive teeth, hair loss/thinning, MOON FACE :ymad:

I know there's more than that too....

I've never been so depressed about my appearance in my life (despite losing some "weight" from the flare, because it was mostly muscle), and that includes when I was chubby in college before I started working out. As for appetite, being into bodybuilding I had little trouble with discipline, so I didn't really balloon up in weight, but I'm sure that would've be on the list too. As my friend even said on my Myspace "Crohn's huh? That sucks, I guess the saving grace for you is I know you're very much capable of managing your diet."

Sorry to sound so pessimistic, I truly hope you fair better than I on pred, and hope you can get off it ASAP (meaning you abandon it's satanic influence as planned and don't have to INCREASE the dose while "tapering"....having to start over).

Hopefully your "version" of Crohns doesn't require a maintenence drug, but if it does, hopefully you can get on that to get some regularity in the treatment, as pred is intended to be temporary.

Glad you know, the mystery of not knowing can suck, for better or worse you have some answers. :)
 
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Kittee,

Sorry to hear you have Crohns but at least you can fight it appropriately!! The steroids will calm everything down for you and the reduction should mean you wont suffer either at all or very little hopefully.

Thinking of you
 
Thank you Soup and all.


Day 1: 40mg. The only little thing I noticed was actually feeling more "amped up." Like I have lots of energy. Appetite seems to be same.
 
Kittee, just to add that when i was on Pred before my surgery i thought it was the best med ever. It finally gave me some relief after 3 years of hell. I was only on it for about a month and it never gave me any major negative side effects.

There are times when you have to be cautious with pred however. It was a major factor it my surgical wound becoming infected.

My conclusion. Prednisone.........the best worst drug ever concieved.

Good luck and take care.
 
well i wont lie to you, I am awake at 4.55am and I havent been to bed yet. Just cannot sleep whilst on pred but then again, i know a few people who have also been on pred and dont have no troubles.

Best of luck anyways
 
Day 2: I Did not sleep much at all last night. I feel GREAT today however. I am very awake and alert. This may be too much info but did Pred ever help uhm "Clear" out your system? I swear I had some movement today that was incredible. I've never gone that "amount" in one sitting before. I feel "clean" on the inside lol.
 
Kev,

Well i take mine around 8am and I suppose i am faced with another problem because I work from home I never get tired like I do when I used to be out and about on construction sites etc. But thanks for the tip. appreciated.

Kittee, never had that prob to be honest but are you finding your appetite is increasing? if you are eating more than usual your quantity of waste should be up aswell so this may explain. Just a thought thats all.

All the best
 
Nope, I'm watching my appetite like a hawk. If anything I'm purposely eating less. My goal is not to gain no more than 5 lbs on this dang drug. I guess I get about 1000 cal a day.
 
Hey, how are you doing ?
I'm from Belgium and I have a work to do for Biology about the disease 'Crohn' ...
I'm registred here to talk with people with crohn and to learn more about this illnes.

so, take care and thanks
 
sorry you're now an official crohns club member kittee, but in a way its a good thing you know (and your docs know) exactly what it is.. i hope the pred helps you get on top of the symptoms with few side effects. i cant really advise on that area as the only pred i have is by suppository, and therefore i dont get the side effects.
 
hmm well, its not something i find particularly pleasant, but i guess after what we go through, i can cope with it lol.

i'm being treated this way because i have a borderline osteoporosis diagnosis, and the docs dont want to make my bones any worse by giving me the oral steroids... but to be honest, i'm not sure its helping any.
 
*comfort* I hope you do feel better soon.

In other news, I've developed a slight pain in my right lower side. Of course my mind goes immediately to appendicitis but I have no fever etc. Could just be irritated from all the "movement" I've had today. Its hurt on and off before so I really shouldn't worry right?
 
thank you :)

its a difficult call when a pain arrives or shifts... i think most of us (particularly those who've had surgery) get used to certain odd stabs of pain here and there. i get abdo aches and pains that come and go, and also a stubborn stitch-like pain under my left ribs, which i think is adhesions. but if a pain comes which worsens, & you begin to get any other symptoms alongside, it would be best to get it checked out. hope it goes soon, kittee.
 
Hey Dingbat.. about the Pred suppositories... you say it doesn't seem to be working. Did the doc give you any idea of the success rate of taking it that way? The reason I ask is that I questioned my GI as to why I wasn't being placed on the steroidal enemas.. (not that I liked the idea, they hurt worst than the disease - but they were effective... stopped it in its tracks after 45 days AND I was symptom free for nearly a decade). So, anyway, I really wanted to know why, since nothing else seemed to be working, they wouldn't/didn't try them again. According to all the GI's, with my disease now throughout the colon... giving pred this way wouldn't stand a chance.
Maybe a suppostory stays within the colon long enuff to be absorbed by the body... or maybe your docs are trying a long shot due to your issues w bone loss... have you questioned them on this, the answer is worth knowing
 
hi kev. i was told by the team that the combination of pred suppositories, and asacol (also suppositories) stands a pretty good chance of calming down this very active patch of crohns i have just now. it is actually down in that area, so i think thats also a factor as to why they've given me this form of med. however, i think i've mentioned before, i cant seem to get on track with the asacol, because it makes me bleed :( so i'm only doing half the recommended treatment.

so far, my team havent given me any other medication options - it seems to be this combination or major surgery. but i've been reading up, and talking to people about the other meds out there, and am going to bring this up at my next appointment.

i would imagine, with your crohns being through your colon, the suppositories wouldn't be effective because (i think) they are a more localised form of administering the pred, as opposed to oral which goes through your whole system.
 
Well, if it's in that area, then either supps or enemas should do the trick. like I said, those steroid enemas I had did work (but i'd have to be desparate to go thru it again... shows you how bad things were when I demanded to know why the dr's wouldn't try them again)... I'm surprised the asacol made you bleed more... that is bizarre. Course, some folks can't tolerate ASA in any form.. I've been lucky that way, it never upset me... All the best.. If the supps don't do the trick, you may want to try the enemas... I warn you, they aren't fun, but they are effective (for me)
 
Day 3: I think the pills are hurting my stomach. Not only did I have a lower quad flare last night, but today I'm having my upper "swallowed glass' feeling and heartburn going up my esophagus.
 
aw kittee - sorry to hear that. maybe it is the pills, if thats the only recent change in your diet/meds. can you 'sandwich' the pills in between eating, like mid-meal, to cushion the effect a bit?

kev - i did try the enemas when the pred in suppository form was unavailable from the manufacturers the other month. it made me cry, i was in so much pain - so i cant really go down that route either.

re the asacol, the first bleed i had on them was a big one, and i was quite scared until it dawned on me it might be related to asacol. i looked up side effects on the net, and sure enough, in some people it does cause bleeding. i've since been given a smaller dose, but i still get the bleed effect. i sometimes think i am lost cause lol. all this seems to go hand in hand with my increasing sensitivity to drugs as i get older :(
 
Hi, Ive been on pred more times than i can remeber! lol! I absolutely HATE them! The worst thing for me is the moon face, and my confidence drops loads. I also get really bad mood swings, the way i describe it is; its like someone has climbed into my brain and pushed the 'devestation' button. Ive even had panic attacks with this before :( not nice. I also got really bad insomnia ( but was also told not to take them after 4.00pm) and god.....weight gain (ugh!) and increased appetite (which i hate). Like you said losing a bit of weight with a flare up, is the only bonus i get with it! lol!
But after all that, the steroids have always worked well for my crohns and always put me in remission, so i suppose its worth it.
Good luck!
 
P.S My nurse once told me to take them with milk because they can irritate the stomach, so i usually do, or straight after food.
XX
 
well so far, I've had less of an appetite with this stuff.

Today it's like my body is rebelling, trying to flare it's little heart out. I've been to the bathroom 3 times in the last hour alone.

LOL
 
At the IBD convention I went to yesterday it was noted by one of the dr.'s who presented that steroids in suppository form were showing only about 20% of the sides of oral (prednisone)....but getting a good bit of localized benefit all the while, just thought I throw that on the table since I just heard it.

And yes, the steroid enemas were probably the worst pain I've gone through with this disease, side effect or symptom wise...
 
Great advice about taking them with milk... but did she question you to see if you are lactose or dairy sensitive? Some might find it causes more grief than it solves.
 
BWS1982 said:
At the IBD convention I went to yesterday it was noted by one of the dr.'s who presented that steroids in suppository form were showing only about 20% of the sides of oral (prednisone)....but getting a good bit of localized benefit all the while, just thought I throw that on the table since I just heard it.

And yes, the steroid enemas were probably the worst pain I've gone through with this disease, side effect or symptom wise...
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benson, thank you for passing that info on, its given me a boost to stick out the pred suppositories a bit longer. we know where my crohns is (i've actually seen it on the monitor) so i was hoping this treatment would really get to it and calm it down. i was beginning to lose faith to be honest, before i read your post, but am a bit more positive now. thank you :)

just a question to anyone who's used pred - how long into the treatment do you think it is before it begins to reduce the inflammation?
 
I always used to get a severe burning pain in my stomach when taking steroids. The doctor eventualy prescribed Omeprazole for me. I heartily recommend it.
 
Thanks for the tips. I will ask my DR. Tomorrow for something to help the upper stomach pain.

Day: 4 - Still mini flarish feeling. Earlier really hurt like bad bad heartburn. Couldn't eat all day but just ate some mac n cheese and peas lol!
 
Recently Diagnosed Myself

Kittee said:
Oh I so did not want to hear that. Maybe I should suffer on for a few more months, lose 30 more lbs then start it =P
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Well at least you now have a name for it as do I. I've had symptoms for 20 years uninsured , until 2005 and always called IBS. Mine was found also by the camera cap 1/02/08. I've been on the steroids, had 2 rounds of Remicade with a really ugly reaction. Just did my first injection of Humira this last tues. I have blisters that formed all over my body, my eyes are blood red under the lids, also have trouble sleeping.
 
dingbat said:
benson, thank you for passing that info on, its given me a boost to stick out the pred suppositories a bit longer. we know where my crohns is (i've actually seen it on the monitor) so i was hoping this treatment would really get to it and calm it down. i was beginning to lose faith to be honest, before i read your post, but am a bit more positive now. thank you :)

just a question to anyone who's used pred - how long into the treatment do you think it is before it begins to reduce the inflammation?
Click to expand...


You're welcome, however, just to clarify (after rereading my post), that dr. who presented did state around 20% sides of oral, but sort of conveyed that the specialty of the suppository version was localized, and that it isn't as circulated as the oral (which is more absorbed into the bloodstream than suppositories). Meaning that far less sides, but potentially less total-body effectiveness (instead it's localized in the areas its absorbed in). My mom's a pharmacist and has said herself about my Asacol suppositories that the area down there (the rectum) has blood vessels that VERY quickly absorb medications, and said that even in Europe (we're in the US) they often will give a basic painkiller via rectal administration simply because it's much quicker than oral administration. Glad this info helps you navigate some mysterious waters.:)
 
Glad you're starting treatment Kittee, sorry its Prednisone. I think I hate it more then Benson if thats possible. I think once you start getting the positive benefits from it you'll notice an uptick in your appetite, thats what happened to me. I hate to admit this but I actually ate an entire tub ( 1 gallon I believe?) of ice cream one night on that junk. I actually think the longer you're on it the less the jitters will be a problem, at least for me I've been on it basically since last November and i don't hardly notice them anymore.
 
It was always my understanding that suppositories were much more rapidly absorbed than an oral med... since 'oral' supposedly have to pass from the 'lined' stomach to the GI tract to be absorbed. I dunno how true this is.. it may be more lore than data. But to an uneducated layman, it makes sense.
 
Day 5: Heartburn but my DR called me to check on me and when I told her she told me to talk my Prilosec. SO np! =)

Still having trouble sleeping. My appetite has not gone up or down.
I should weight myself but I am scared too.
 
Day 6: Yep Priolsec and Pred don't mix for me. I had to rush home right after lunch at work, much to my bosses surprise. Man that did not work well. I got super dizzy and my heart was pounding out of my chest!

I laid down when I got home, took a nap and I feel better now though geeze!
 
Hey Kittee-
Yes, prednisone - I am tapering right now after a surgery just had. I've been on it since Jan and I never had an issue with weight gain or appetite and it never really took my pain away but I have just learned why (thus the surgery)...but I did have morning fatigue and heart racing. In the hospital last week they divided my dose -that helped me but I think you said you were on multiple dosages now.
I hope you feel better soon!
 
I honest to God thought I was going to have a heart attack as I was lying in bed all day every day all throughout the holidays and yet my heart still raced at just about 2 beats per second nonstop, I had to have an EKG and an examination! I'M ONLY 25 CROHNS!!!!! Damn pred (here Benson goes again....).

Metoprolol (usually for hypertension) helped bring it down to around 75 bpm....heart disease is on both sides of my family though, plus I'm a male (lucky us)...despite the fact that I was in pristine health for a couple years prior to Crohns and all and in amazing shape, I deteriorated from Crohns in a matter of weeks and then months with this latest flare in starting last fall.
 
Day 7: No Prilosec. Not so much Dizzy (still dizzy tho) and no heart races.

My dr. did call and try to prescribe me anti-anxiety tabs. What the heck? I know the difference between panic attack and what I experienced yesterday. =(
 
Day: 8 Started my day with a Boost drink. Seemed to help me all morning.
Ate a salad for lunch. Not so good. lol

Dinner I am going to have some white rice. OR maybe just a Boost.

Feeling kinda "down" today. Weather is gross and cold tho.
 
You ate a salad? With fresh, "RAW" vegetables? If you wanna commit suicide, aren't there less painful ways? What were you thinking? Or were you?
 
LOL well I'm still trying to figure out what foods are friendly and what are not. Salads are supposed to be healthy? =(
 
Salads are healthy... for healthy people... Same as fibre...

I loved salads... fresh veggies of all kinds... barely cooked or totally raw. And breads... deep, dark rich multi grains... coated with sesame or caraway seeds

ALL GONE... SIGH!
 
Meh *Cries*

I have to find something healthy to eat tho. I get really backed up if I don't eat fiber. I actually feel worse if I don't eat it.
 
Its' not 0 fibre, it's low fibre... and it depends on the state of inflammation or bleeding you are experiencing. Like, if your GI tract is highly inflammed or you see a lot of blood, then dialing back the fibre passing over the area is like you give it a little rest... like, you wouldn't rub yourself with sandpaper if you had a sunburn, right? You need some fibre, else you'll risk constipation.. same for fat content... you need some fats, just try to go with the 'good' type. It's a pretty individualistic thing. you'll learn as you go what 'trigger' foods affect you.... just that some are pretty common.
 
Well two types of fiber, the kind that gets absorbed into water and becomes jelly, and the type that remains undigested plant pieces. They are all mixed though.

The steriod not helping? Might try a liquid diet for a while, jello, broth, juices, milk (if you can handle). Not too bad if you can find some good broths.
 
I feel better today. I ate solid food! They had me on liquids for 2 days due to the whole "stuck camera" issue.

Thank god that crisis is over lol.

My DR. phoned me again and left a voice mail for me saying they want to see me next week to discuss long term care for my Crohns.
She wants to discuss medication options etc. I was so hoping that they wouldn't want to put me on anything after the Predinsone. Wonder what they will suggest...

Oh and today, took the Predinsone late, 3:30, due to all the barium etc testing this morning. Today was the first day of the 3rd week so I dropped down to 3.5 tabs or 35mg. Taking it late in the day actually wiped me out, and I had to take a little nap. Woke up feeling all groggy and muggle headed, but after a shower the feeling eventually passed. Gonna be hell trying to get to sleep tonight. I feel so "productive." I can easily see how people get "addicted" I use the term very losely, to Pred. I've been pretty much feeling like "Superwoman" on this stuff.

And I guess since I had the pill issue/still hurting issue etc, liquid diets and all I keep losing weight. Which for me is GREAT thing. I'm down 45 lbs now since last July.

Hello can you say 183? =)
 
I am feeling "Fabulous!" I think this is the best I have felt in about 5 years truthfully.

I just have so much energy and my stomach did not hurt ONCE today. Not ONCE! I cannot believe it. Ok ok well it was a little "sore" feeling a couple times but none of that familiar "gnawing glass sensation!"

So now that the pill is out perhaps the prednisone is working or could it be the power of POSITIVE Thinking!!! :lol:
 
That's great.

I will admit that back in Oct when I FIRST started this most recent pred run (now 6 months long), that INITIALLY, I had lots of "constructive" energy, like I wanted to clean my room, get this done, get that done, very upbeat....until I got worse from Crohns and things went south. But for a couple weeks or so..........
 
Benson tell you what ...I'll take these couple weeks. If it's all I get for awhile, I do not mind. I am thankful. =)​
 
Well I hope you are like many of the others who've had great success and little apparent sides with pred. Don't assume you'll have it like I did, many people I see here don't mind the pred....just enjoy it and don't plan on it ending, if it does, take it from there.:)
 
Aw, that's great Kittee. So glad it's working for you! I am tapering now off the stuff but really haven't any issues with the weight gain and such - some rounding of the face and acne but nothing too crazy. I hope you keep feeling better and better!!
 
Update: ONIONS ARE THE DEVILS FOOD!


I am torn up today on the inside. That good ol'swallowed glass feeling is back. All because I put onion in my pot roast lol!

Lesson learned!
 
Great idea! My hubby loves cooked onion though! We are going to have to find some sort of compromise because today was sheer agony again for me. Still hurting now in fact lol. Its even harder this time around because I was feeling like a normal, healthy human being for a good 7 days there ha! *hugs all*
 
Does anyone know what he heck onions have in them that disagree with some of us? They are the only food that can make me suffer badly.

Dan
 
Well, I dunno. I love onions... and yet, pre illness, I could eat them to my hearts content, even RAW, and they didn't bother me at all (except if my date didn't eat onions)... Now, on the other hand, onion powder or onion salt just killed me. Post illness, the only way I can get a taste of onions is to place them in a meal whole; then remove the whole onion. I know it's a gassy veg, and I'm playing with fire... I haven't tried 'milder' varieties, the general rule of thumb being the bigger and paler the onion, the milder effect it will have. Anyone tried red, spanish or white onions? As for the cooking for more than one's self; yeah... that's a tricky prop.. The only suggestion is to go with the whole onion idea; then when it's ready, segregate the meal into with N without; and cut up the cooked onion and return it to the 'with' dish. The other option is to eat it with and suffer the consequences. The problem with that approach is that usually I adher to the theory that if our body is trying to tell us something, the wise move is to listen to it.

And, as to what it is that bothers us... they are a known pre-biotic. Wonder if the bad bugs eat first?
 
Well at least you have an anwser now. I have been on pred for a while now after being dxd four months ago, and yes you do feel a bit jittery for a while until your body gets used to it. I found that if I take it as early as posible in the morn then it does not effect my sleep, but everyone is different. Have they given you anything else to take because i am also on sulfasalasine, 2x3 a day good luck talk soon.
 
Hey there! Doing good since I got over my onion incident. I will avoid those like the plague now haha!

They need to see me again soon to put me on maintenance drugs but I'm kinda being hesitant about that and praying that just the Prednisone will take care of it. We will see.

THanks for asking about me though, I hope you're doing well.
 
I never had the jitters/shakiness subside, but then again, I've jittered from other meds long before the Crohns/pred, the pred just made it worse.
 
Ok update time...

Down to 25mg and headed down to 20mg on Weds. I am not doing well. =( Ever since I have tapered down past 30mg my "swallowed glass" feelings have returned and my old friend constipation with a dang vengeance.

I just drank some MOM so I can go tomorrow, I had to do this 3 days ago as well. If I don't go I am in agony but I hate taking the laxiatives.

I have a DR appointment on the 12th so hopefully I can make it until then.

I wish I could take more Pred to get back to feeling good. But at least now I know feeling that good is possible.
 
Yeah, the whole pred relationship can be a bittersweet thing. At times it will drive you crazy with it's quirky side effects... but at other times it makes you feel superhuman... or at least, human again. Think that's the worst part of it.

You get to the point where you feel sooo good again, so 'normal', almost cured... then, reality check time.. You have to taper off of it, and all the bad things come back. Least, they always came back in my version of it..

Anyway, Kittee.. all the best. don't wait till the 12th. Call the doc. Explain the downturn. He/she may decide to bump you up temporarily, then resume the taper again. Better to ask vs assume
 
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Thanks Kev, I made a phone call today I hope she calls me back tomorrow. I told her that I was flaring again and having problems on the message. I hope she lets me taper back up a bit so I can get it under control. =)

You get to the point where you feel sooo good again, so 'normal', almost cured... then, reality check time.. You have to taper off of it, and all the bad things come back. Least, they always came back in my version of it..
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That is exactly how I feel right now. I was feeling so good, so NORMAL and I had forgotten what feeling good felt like. In fact I didn't know how BAD that I was feeling until I felt really good again.
 
:( sorry to hear that kittee. i hope they do get back to you quickly, and can offer something to get you back on track. crohns and the meds certainly put us on a yoyo sometimes, eh.
 
Dr. called, told me to hold at 25mg for now, although I didn't get the call until after I dropped to 20mg today. So I'm kinda at a loss of what to do. Do I go back up to 25 tomorrow or hold at 20 instead? lol
 
my instinct would be to resume at 25 from tomorrow onwards kittee, but hang on until others advise you in here, as i've not been through the meds regime you're on.
 
Yes, i 2nd that.. hold at the 25 (consider the 20 as like u just missed a pill). confer with your doc for clarification... and see if the hold @ 25 improves things... 20 did nothing for me, 40 did the trick, but I'm massive compared to you..
 
*nod* will do. I will take the 25 tomorrow until I hear back. I wish she would have said 30, because I noticed the problems started again when I went down to 25. =(
 
Well, I hope if they increase you they do it in a way that works, I had no so great of luck when I went off the deep end in Nov and they put me back up to 20, then 30, then 35, nothing, didn't seem to make anything better, in fact I got worse, but like I've said they were thinking at that point I was so bad it was just shooting through without absorbing.

One thing to remember is exactly when you see a change isn't always the very moment you should look to what dose you're on. For example, if one sees a flare get worse at 15, and they were at 17.5mg 4 days prior, and 4 days prior to that they were at 20mg, the drop from 20mg down to 17.5mg may have caused the effects that one will attribute to to the drop from 17.5mg to 15mg (meaning you have to be careful which decrease you blame for your deterioration). There's several days or even more of a lag of the pred in your system, a delay, like even though I went off the pred 2 days ago, my body may still have levels from when I was at 7.5 mg or 2.5mg or what have you, it takes a while to "update"...
 
Thank you BWS. :)

Well...I went back up to 25 today and I already feel better? I don't know what to say. =/
 
thats great news, and really encouraging for you kittee :) maybe you can stay at that level for a while then - it obviously seems to suit you at 25. keep up the good work!
 
Dr. Just called again, they want me to start Remicade....I am not sure how I feel about that. I need to read those "Remicade" threads now.:runaway:

They said that if I'm flaring at what they consider a still high dose of Prednisone that this would be my best option. They also said that it's a 2 week process to get the paperwork filed and worked out for Remicade.


My main concern is "will my insurance cover it." If not then I cannot afford this treatment.

Anyways...heading off to read the threads so I don't ask questions already answered. :)
 
Well I did my research and I am quite happy trying this med. It is wicked expensive but I told my hubby last night that if this can cure the pain and sickness I've had for the past 5 years (Undiagnosed) that 1500-2000 co-pay is WELL worth it.

I also was happy to read that you can still conceive on Remicade and that is a huge relief as we are family planning.
 
Well, without casting shadows on Remicade, I would suggest your question your doctor about ALL your other options.. One that immediately springs to my mind is Humira. Why? Well, others on here have had good results with it, and it perhaps is less expensive AND less demanding (I mean, a self injecting pen seems a little more 'family' friendly than having to routinely go for IV based infusions at a clinic/hospital). Those aren't 'all important' considerations, and these may not be your only options. I just think you'd be well advised to discuss ALL your options with your doctors, ask why they put forward one over the others, weigh that info, then make 'your' decision. A lot of time a doctor will tell us to do something, and we don't, out of respect for the 'authority' figure of the doctor; ask 'WHY?' Their reasoning MAY not best reflect your own... Or it may. Won't know till you ask. I mean, its' one thing if a dr. put forward this option because its the absolute best choice for you as he/she sees it; different IF it's because its the 'routine' response. Sometimes, to get the best from our physicians, we have to be willing to push them a little bit, talk to us, explain it to us. Not just take it on faith, not just 'assume' it's our best, or 'only' choice. OK? hope I haven't discouraged or frightened you. Certainly don't mean to.
 
Thanks Kev, you certainly didn't and I think all of you would be proud of me because when the Dr. called again today to chat with me I did question her about Humira and my other options.

This board has been a lifesaver for me and really eases my mind to know what to expect as I go though this. I really appreciate everyone here who has been such a wonderful help to me.

But back on the topic at hand...

She said it was an option but they've had better experiences with Remicade and Remicade can be taken "alone" as a solo drug option without needing to add other meds. I believe she said the used to do 6mp? or something like that with Humira (or something else) that can cause some type of fatal lymphoma etc. Also there is the whole being safe to conceive thing which is right up there on importance for me.

So in conclusion, I won't really know what the decision will be until the 12th when my appointment is and I can sit down with her and talk. But I am certainly open to advice. =)
 
Well I'm tapered down to 15 since yesterday. Doing ok! Which is good. Tomorrow is the DR appointment. Wish me luck.

I have to ask though... please tell me this Pred "pizza face" goes away pretty quick after I'm off the pred? I look like I'm 15 again. Pimples galore lol.
 
Kitte that seems really expensive for a co-pay. My Remicade costs a total of 2 grand and I don't pay a dime.
 
Hi Kitty, I read your stories, and yes, the Pizza face does go away, been on and off Prednison so many times lost count, as with the facial hair, it all goes away. I was on Remicade but had a terrible reaction and the cost was 4,200 bucks, and I thank God I have coverage. Now I am on Humira and nexium, but had a flare up the last two weeks, and then just this Friday took Humira, and hour by hour it was getting better, because my specialist wanted me to go on pred, I filled it but I really dont need to now. I see everyone taking all these meds, as I had too,been on them all, but the most the helped was Cipro and flaygl, I still take 1 cipro and flagyl a day. If this humira which is by the way 1600 a box, you get two needles...if this doesnt work, my Gi recommends surgery, and would be my 3rd. So I am trying to be good and fight it to not have another one. I think I read you are family planning? What does the doc say about that?
 
Hehe I haven't told the Doc about that yet. We aren't planning until around Christmas so hopefully I am not in flare by then. I did briefly mention it on the phone while discussing Remicade though hence the convo about it being safe. So *crosses fingers*!
 
I feel like warmed over poo.

Just tired as all heck today for no reason. So sad too because after a 4 day weekend I have to return to work tomorrow. *thumps head on desk.*

Oh yeah I guess I should share...the info about my appointment yesterday.

Well the did a TB test to make sure I don't have that before I get the Remicade and we discussed Remicade for about an hour...then... they sent me to discuss financial things.

Apparently my insurance company may want to claim this is a pre-exisiting condition which of course is ridiculous because I wasn't diagnosed until Feb or March and I've been covered since Nov. But if they DO somehow get away with it, that means I have 3 options:

1. Pay cash. (Cannot happen.)
2. Quit my job and get full Gov. funding. (Cannot happen.)
3. Wait until Aug. when the preexisting rule can no longer have effect. (Ding, ding ding!)


So I haven't heard back from my insurance company yet but when I do I'll update.

For now however my DR has upped my Pred to 20mg to hold until Remicade has gone through at least 1 infusion.

(I really hope I feel better tomorrow yuk. I mean you just cannot call in sick after you've been on a 4 day weekend.)
 
Last edited:
Hey Kittee.. Aren't those insurance companies just the sweetest folks on earth? NOT! Anyway, have you discussed with your doc whether to delay the remicade UNTIL after the anniv. date in case they don't cover it from the get go? I mean, if you do a treatment or two, and they refuse to cover, what will you do?
 
72 mins on the phone I swear. Apparently they need me to fax over proof of insurance before June 2007- What the heck...

But I'm getting that done tomorrow.

Then I will know more.
 
The insurance company may try to deny payment for treatment on the thinnest pretense. Just make sure you know your policy back and forth or they may try to make up reasons for denial that conflicts with the policy.

Good Luck

Dan
 
Yep I bet. They were saying all kinda crazy stuff today on the phone. I wouldn't let it drop though.
 
Almost every insurance I've ever come into contact with will try and pull the "prove you had insurance prior to such and such date" in order to bail on on the b.s. pre-existing condition clause.
 
Still haven't received my damn paper from that prior insurance company. Supposed to be here by now. If it's not here by monday I'm going to make them fax it somehow. No more of this snail mail B.S.

Also Predinsone ...20mg I'm eating like a damn horse and I've put on 10 lbs. I'm so sick of this. My face is breaking out like a teenager not to mention it looks like a plate (moonface.)

So I'm feeling fat, looking fat , and I keep getting constipated. I hate you insurance companies. I hate you.
 

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