Steroids & Incessant Hunger

somewhere_sunlight

Ive been stuck on 5mg for years now.Its like treading a very fine line reducing your meds. I had a trial of reducing another immuno suppressant that i have to take and within a few weeks I thought I was going into a flare and went straight back to the original dose.

Careful_with_that_Axe

have tried Hydrochloroquin which brought me out in hives and Azathioprine and Methotrexate put me into anaphylactic shock.
Steroids are the only remaning option at the mo. Have also proved to be allergic to all chemo tried.
Would be interested to know what immuno suppresants you have tried ss?
Complicated for me that I have never had MMR vaccine as ws brought up in Holland and they had no immunisation programme. They can't give me the vaccine now as they're live vaccines.
I tend to stay away from kids :rolleyes:

Loopy_Girl

Interesting points here. My Mum was diagnosed last year with an extremely rare autoimmune disorder (only 50 reported cases in the past 50 years) and is now, and has been for 8 months, on steroids. She has put on a fair amount of weight and can eat like a horse!! It is weird to see as she is only ickle and ate very little previous whereas now she eats more than my Dad!! I know she is stressing about the weight gain though and has said 'she needs to stop eating'. Will pass on some of these tips for her. Thanks

Softstuff

I'm not familiar with steroid related hunger, but am certainly familiar with always being hungry!
Healthy things that work for me are porridge (having a huge bowl in a morning keeps me pretty good), it reduces cholesterol and made with skimmed milk is pretty good.
Baked potatoes are a good filler (eat the skin too!), bananas are slow release so banana smoothies are a big help and I often have a couple more in the day.

sonee2405

Really interesting thread and helpful too.My mum is on 6 5mg steriod tablets a day and has been taking this dose for the past 3 years for Pemphigus(another auto immune ).This illness actually causes severe ulcers and blisering in the mouth, tongue, soft palate and throat aswell as sores all over the body and steroids are the only treatment which control the severe attacks-mum was very slim and petite but has a round shiny "moonface" now which does look odd when compared to the rest of her body.The hunger problem is there because of the high dose she is on but because of the severe pain in her mouth she isn't able to eat most things and has to rely on soft or liquid type foods and always feels weak with hunger-it's a horrible situation to be in not being able to eat but feeling hungry all the time.

somewhere_sunlight

I was once on cyclophosphomide sp?but my hair came out in clumps and practically wiped out my immune system ,and made me violently sick all the time thank god i was in the hospital at the time when i collapsed.It was a case of the drugs working too well and destroying everything in its path lol

Careful_with_that_Axe

sonee2405 wrote: »

Really interesting thread and helpful too.My mum is on 6 5mg steriod tablets a day and has been taking this dose for the past 3 years for Pemphigus(another auto immune ).This illness actually causes severe ulcers and blisering in the mouth, tongue, soft palate and throat aswell as sores all over the body and steroids are the only treatment which control the severe attacks-mum was very slim and petite but has a round shiny "moonface" now which does look odd when compared to the rest of her body.The hunger problem is there because of the high dose she is on but because of the severe pain in her mouth she isn't able to eat most things and has to rely on soft or liquid type foods and always feels weak with hunger-it's a horrible situation to be in not being able to eat but feeling hungry all the time.

Blimey - I feel for her.
I've found just these "normal" but long-lastiing mouth ulcers have really got me down, so I can't begin to imagine how she feels.
I'm afraid the moon face does come with the territory and I'm lucky enough to have the discoid butterfly rash too.
I've had breaks from Steroids where other things have tried and, although it takes a while, the moon face does eventually fade.
With me it came on quite suddenly - even my GP who I hadn't seen for 10 days or so was shocked how I had bloated up.

SS, my immune system does seem compromised anyway - except for still managing to cause the havoc of the Lupus and MCTD! So I've never been fussed about it being knocked by medication - it's a price I, personally, am prepared to OK. Of course I understand that isn't the case for everyone.

On an aside, I'm 5 sessions into a course of 6 sessions of hydrotherapy and can highly recommend it.
It does leave you feeling weak as a kitten afterwads, but as the exercises are non-weight bearing and the pool is blood temperature, I have experienced no stiffness. It's been a revelation to me and has been wonderful to feel I can be "active" again. Helps keep the weight off a bit
too.

Another poster (who suffers from ME) and I are putting together info to start a thread on methods for managing difficult tasks that we've worked out and also various resources.
e.g. I used spoft hair scrunchies on the handles of my sticks/crutches in wet weather so my hands don't slip and, as they are soft, I don't get pressure blisters.
If anyone has anything to add, either PM me or look out for the threa in 10 days or so time - probably on health-type board, but will post link here when it's up and running.

Off to have some toast now

Moggsy_2

My son had the same hunger problems when he was on steroids last year. He had severe ulcerative colitis and during his flare-up's, he was on as much 60mg a day. His weight gain and moon face were really noticeable as he had a massive appetite. We found a large bowl of Ready Brek in the morning usually kept him satisfied until an early lunch as he wouldn't eat porridge. He went Athathioprine too, but after 3 weeks he was rushed into hospital with acute Pancreatitis caused by the drug. Unfortunately, my son had been on steroids for a period of 6 months and the ulcerative colitis had become steroid dependent, so he ended up having a total colectomy. The weight he put on whilst on steroids, has been hard to shift, but at least he hasn't put any more on since his op and he is still growing, so hopefully it will balance itself out.