Long term prednisone side effects-weight gain??

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rbartolo
Regular Member


Date Joined May 2011
Total Posts : 336
   Posted 8/21/2011 8:31 PM (GMT -6)   
I was on prednisone for 7 straight years.  No breaks at all.  During extreme flares I was able to lose weight but when I was stable I would blow up.  I managed to get entirely off the steriods (not before going into adrenal failure) 2 years ago.  Although I was able to lose  a considerable amount of weight, over the last year I've gained 20lbs!  I am now at my steroid weight.  I was in the worst flare for 2 months from Feb to Apr this year going 30+ times day and night.  60 exhausting days.  I only lost 4 lbs during that entire time.  That was my first clue something was wrong.  I'm extremely active and can't figure this out.  Any ideas??  I've started the Dukan diet today which claims I'll lose up to 7lbs in a week.  I'm skeptical since I wasn't able to lose weight during the flare.  Could the steriods still be affecting me? After eating I feel so bloated and full.  The rolls of fat make me uncomfortable and aren't "me."  I can't figure this out :( 
 
Thanks for your ideas!
 
Ruby 

kate22
Regular Member


Date Joined May 2009
Total Posts : 214
   Posted 8/21/2011 10:38 PM (GMT -6)   
hi,
gosh, sounds like you have been thru the ringer. i haven't been on them for periods as long as 7 years, but i have been on them for a year at a time, off a couple months and then on again for another year! it's horrible, i know. you DON'T feel like yourself...i get it! congratulations on getting off of the poison. i know there are times when you just have no choice but to take the stuff. so do i have it right that you have been off the steroids completely for 2 years? i know the side effects take a long time to go away for me. i have heard that prednisone can remain in your body for some time. however, maybe you could consult with an endocrinologist to find out if that is the problem? perhaps he/she could be of some help. i'm so sorry you have gone through all of this, and i hope you are back to yourself soon! good luck!
UC since 1994

75 mg mercaptopurine, rowasa enemas, delayed release lecithin capsules, folic acid, vitamin D, Renew Life Ultimate Flora Critical Care Probiotic, vegetarian diet

rbartolo
Regular Member


Date Joined May 2011
Total Posts : 336
   Posted 8/22/2011 12:20 PM (GMT -6)   
Thanks Kate22.
Yes it's been a long haul.  I went to see my GI today and he's testing my thyroid.  I am doing well now since I started IVIG for uc.  So I'm eating and absorbing everything, perfect bloodwork but he too is skeptical at the amount of weight gain but also because I only lost 4 lbs during my last flare.  I certainly don't want to be a skeleton again but even I thought going 30times a day over 2 months I would lose at least 15lbs.  Maybe it's just because I'm getting a tad closer to 40 and a women's metabolism shuts down:(

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2142
   Posted 8/22/2011 1:56 PM (GMT -6)   
I am 36 and flared on and off for the past 4 years, I thought I would lose weight too when flaring, but oh no, not me..........

I was on pred for 4 years with one break of 2 months this Jan/Feb, then completely off on June 6. I have lost about 15 pounds since then, the first 8 was mostly water weight from being swollen from the pred and the rest is from eating a lot less and having salad's for dinner with no meat at night and barely any carbs at night. i like cheese so add fresh mozzarella or goat cheese. Eating badly at night was a huge problem for me. I don't eat what my husband eats anymore (a plate full of meat and rice). I can't change him right now, only me. I am scared to gain that weight back and I still have about 30 to lose.
UC Pancolitis: dx'd 2000; 1st Remicade 4/26/11, 2nd 5/13/11, 3rd 6/9/11, 4th 8/5/11, next 9/27/11.Kidney Disease (Minimal Change Disease): dx'd 2007 caused by 5ASA's. Current meds: Imuran, Lisinopril, Diovan, Calcium + Vit D, Calcitriol & probiotics.

XtraOrdinaryGuy
Regular Member


Date Joined Mar 2011
Total Posts : 108
   Posted 8/22/2011 1:59 PM (GMT -6)   
I never gained weight on prednisone even though I wanted to gain weight. Maybe because I was on SCD most of that time?
GAPS (no dairy, no eggs, no soy, no gluten, low fructose)
Natren, multivitamin, L-Glutamine, cod liver oil, psyllium seed powder
4.5mg LDN (oral, nightly)
25mg hydrocortizone suppositories

kate22
Regular Member


Date Joined May 2009
Total Posts : 214
   Posted 8/22/2011 9:43 PM (GMT -6)   
maybe it was because of scd xtraordinaryguy, or maybe it's because you are male...i notice a lot of guys on here don't get the side effects as often as women. my uncle was on pred as well, and he didn't get ANY side effects, whereas i blow up like a balloon just by looking at prednisone lol! i often wonder if our hormones may make it worse?

hugs to all of you who have been on the prednisone rollercoaster of hell and are struggling to get back to your "self" - it's a long road - just know you are not alone. it is good we have this forum to relate to one another.
UC since 1994

75 mg mercaptopurine, rowasa enemas, delayed release lecithin capsules, folic acid, vitamin D, Renew Life Ultimate Flora Critical Care Probiotic, vegetarian diet

kate22
Regular Member


Date Joined May 2009
Total Posts : 214
   Posted 8/22/2011 9:47 PM (GMT -6)   
rbartolo - just wondering, what is IvIg? i think i know what it is, but didn't realize you could get it for uc...do you live in the united states?
UC since 1994

75 mg mercaptopurine, rowasa enemas, delayed release lecithin capsules, folic acid, vitamin D, Renew Life Ultimate Flora Critical Care Probiotic, vegetarian diet

aquafly79
Regular Member


Date Joined Aug 2007
Total Posts : 317
   Posted 8/23/2011 8:34 AM (GMT -6)   
Yeah, what is IVIG? Never heard of it.

Pred weight gain is such a pain, sorry to hear your body is in such havoc Ruby. Seriously, there should be a support group for those of us pred or who have been on it awhile and suffered through many of the side effects. The support group would be held at 4am for those currently on prednisone.
Meredith

32 years old
Pancolitis
Currently on Asacol
Just stopped Humira (3/11-8/11)
Tapering Prednisone, can't get below 20mg
Canasa enemas sometimes
Diagnosed with many food intolerances including dairy, oats, lime, squash, etc.
Supplements include: Vitamin D, VSL#3, fish oil, calcium, magnesium, multivitamin,

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5421
   Posted 8/23/2011 8:56 AM (GMT -6)   
I never gained weight on prednisone either. Weight gain is a side effect that effects some but not all.

I think it's great you get a full panel checking thyroid, etc. Now may be the time where you also write down everything you eat, including calories, and then document all the exercise you are getting. If you are able to keep good notes, and the weight still doesn't come off, an endocrinologist might be in order.

Sue

rbartolo
Regular Member


Date Joined May 2011
Total Posts : 336
   Posted 8/23/2011 9:25 AM (GMT -6)   
Thanks to everyone who responded. I've been meaning to post my story about UC and IVIG because people don't know that IVIG can help if not put you into immediate remission and I hope I am "cured." Long story short I was dying of Pyoderma Gangrenosum a severe flesh eating disease that almost took both my legs. PG is caused by UC. My UC was uncontrolled basically since I got it in 2000. Was on SCD, remicade, immuran, blah, blah, blah and the list went on and on. I was only working very part time running my own Art Therapy business but wasn't making ends meet and my anxiety was constant. No socializing and lots of lying to people. A mark appeared on my leg in 2007 and within days I was in hospital with a 17 cm open wound. I cannot describe how painful it was. It spread to my right knee. I was in the hospital for 2 years with no treatment working. I also had colitis flares which was horrible considering I couldn't walk. Anyway a very savvy, young med intern did some research and found that IVIG was used in rare cases to cure PG. Within 2 weeks my wounds started closing and within 6 months they had closed!! I started to walk again, no more painful bandage changes, by brain became clear because I was off all pain meds ( I was on everything including morphine patches, injections, percocets etc) I don't think they were worried about overdosing because it is an excruciatingly painful disease. What I noticed was that IVIG put my colitis in remission. I went 6 months without a flare, I time daily, no urgency. For the first time in 10 years I was normal, like everyone else (except I walked with a cane and have horrendous scars on my legs!)

IVIB is introvenous immunoglobulin. The theory is that since UC causes PG, what cures one, cures the other. Basically it's antibodies. My body (and those with autoimmune diseases) doesn't produce antibodies to fight disease. So if the antibodies are given to me they will fight my disease and prevent new ones, like MS which IBDer's are also prone too. It's made from 1000 blood donors for 1 infusion. It's extremely expensive running about $30 000 per infusion. I live in Toronto, ON and my doctors pulled the treatment because of the cost and also because there isn't enough documented evidence to support the treatment of IBD with IVIG. There are a couple of small studies I think in Austrailia. So when the doctor pulled treatment last Dec I started to flare in Feb 2011 going 30times day. ******!! I had an extremely difficult fight to find another doctor to prescribe it based on little evidence (by my story and the before and after pics of my colon). It's still not secure in that the hospital can stop it at any time and it's kind of done "under the table" with 2 GI's too. Anyway within 3 days of my last infusion (I have 3 in a row) I was better. I feel human again.

Please do your research on IVIG because it makes sense. It's "natural" and replacing what our bodies can't make. There will be excessive resistance from you GI's. My bw is perfect, my wbc's are normal!! Iron, normal! There is no inflammation in my body as measured by my bw!

If you need any help please send me a private message and I will do anything to help. I have been pondering a web site but it's certainly a lot of work for my right now. Still unemployed because of the economy :( Very frustrating.

I guess this turned into a long story :)

Ruby
rbartolo29@gmail.com

kate22
Regular Member


Date Joined May 2009
Total Posts : 214
   Posted 8/23/2011 5:17 PM (GMT -6)   
Ruby, so after taking the ivig both times you stopped flaring completely???
UC since 1994

75 mg mercaptopurine, rowasa enemas, delayed release lecithin capsules, folic acid, vitamin D, Renew Life Ultimate Flora Critical Care Probiotic, vegetarian diet

rbartolo
Regular Member


Date Joined May 2011
Total Posts : 336
   Posted 8/23/2011 10:01 PM (GMT -6)   
Yes. I've actually used it about 20+ times over 2 1/2 years. The first six months when my PG was active I did 3 cycles per month. Then they discontinued it. The PG remains in remission, thank G-d. But after 8 weeks of stopping it my uc flared. I was able to convince my doc to give me another 2 cycles and that put me in remission again. This has continued. Then he put his foot down after my very last infusion in late Nov '10. I was fine for 3 months and while I suffered I was trying to find other GI's to take up my cause. Then I had another 3 at the end of April and I've been totally fine since. I usually feel and see results instantly. For example if I'm flaring before the infusion (morning of) I won't go to the bathroom the rest of the day after the infusion. Then I see a significant decrease in blood etc and I'm totally fine within 3-5 days.

In addition to being costly, it is also an intensitive infusion process. I'm normally at the hospital for 5-6 hrs each infusion. Then I come back either the next day or day after for the next infusion. It's intensive and there is no way I could work for the week. My side effects are migraines and general weakness that can last for a few days or week. I do get pre-meds to cut down on the nausea. I just really go home and sleep. Well worth it and this medical intern literally saved my legs from being amuptated but also my life. My biggest fear is not knowing how long the doctor can do this treatment and then being in a never ending flare. It is however also a possiblitity that I'll never flare again. My longest stint between flares after an infustion is 6 months. Part of the problem is that I'm a test case. Do they infuse my profilatically or only when I'm flaring? But my blood work is perfect. In fact the pain and stiffness in my hands is also gone but returns when I flare. Once I infuse it's gone again.

I really need to do a basic web site on this. Perhaps other GI's will be intrigued enough to at least try it on another difficult patients. And it's also "pressure" for the hosptial to continue treatment.

Let me know if you have any other questions Kate. It's can be a little confusing.

Ruby

P.S I'm only on 800mg 2x daily of asacol. I was on 8 pills. But I'm not ready to completely get off it. Other than that I just take 1000mg omega 3 and calcium. Eat yogurt daily

kate22
Regular Member


Date Joined May 2009
Total Posts : 214
   Posted 8/25/2011 1:18 AM (GMT -6)   
that's awesome! i think other gi's should know about this!
UC since 1994

75 mg mercaptopurine, rowasa enemas, delayed release lecithin capsules, folic acid, vitamin D, Renew Life Ultimate Flora Critical Care Probiotic, vegetarian diet
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