I am wondering if it is possible for the body to recover and return to normal after discontinuation of steroids. I don't mean recovering from Behcet;s itself, but from the nasty side effects that wreaks havoc on our bodies after long term steroid use.
I have been on steroids now for about three years.. mainly smaller doses but I guess over time, even small amounts daily will build-up and cause problems. Over these three years, my body slowly changed from being thin with strong, muscular legs and thighs to being well-rounded like a big balloon filled with too much air and a round, puffy face. It wasn't until just recently that I became overwhelmed and shocked by what I saw in the mirror-- it was extremely disheartening because I couldn't even recognize myself anymore, but at the same time, I almost forget how I once looked. I try not to let this get to me because I know its not my fault as a result of just being lazy-- I try my best to accept the fact that I am very sick and this is just something that goes along with that. At the beginning of steroid use, I remember thinking that it was a "miracle drug" and I didn't care about the warnings my doctors gave me about the consequences of too much steroid-- all I cared about at the time was getting a bit of relief to help me through my day. Now, nearly three years later, I completely understand why my doctor was warning me and was reluctant for me to take steroids too often. Luckily, I have not suffered the severe, irreversible effects like diabetes or osteoporosis. But I know that those things are not too far off from occurring if I continue down another lengthy road of steroid-use.
It's been about a month or two now that I have been very diligent about how much steroid I take in a day, I try to only take little pieces rather than an entire pill. It's really rough, but I am determined to see if I can decrease some of the effects of it. My doctor has also been on my case lately about how much weight I've gained and told me that can't keep happening.
Does anyone else find they are in a similar situation? Has anyone suffered the effects of too much steroid, but had them decrease or even disappear completely after stopping the steroid, and if so, how long did it take?
Thanks,
Jenna
Written by
behcetshurtsbeyondwords
To view profiles and participate in discussions please or .
I don't seem to get any side effect from the oral steroid, currently 35mg. I do get a chipmunk face from the IV steroid. I tend to have the 3 pulses of 1000mg over 3days every three to four weeks but don't gain weight.
Exercise, healthy eating are advisable in any case. But it is harmful to tell anybody to stop taking steroids!!! It should only be reduced, gradually tapered, under strict medical supervision. Suddenly stopping steroids is dangerous as it can lead to collapse and even death.
Someone should re-work the Hobbit's title:"There and Back Again - a Behcet's patient experience of prednisone..." as I'm sure many of us have been changed by it.
It can be horrible but you are not alone.
I dodged diabetes and osteop but didn't dodge the weight gain, puffy face and associated misery. It's more than a year since my last course and I am starting to recognise the woman in the mirror through careful eating and a little exercise. You can do it, it just takes time.
Hi, my daughter was on steroids for several years, gained about 4 stone in weight she couldnt stop eating, and now she has signs of a crumbling spine where is is taking calcium supplements, but every patient is different so you really shouldnt take other peoples experiences to heart.
hi hun been in the same shoes as you i gained 5 stone when on steroids but i think the illness also effected me as to why i comfort ate ,i too ended up with a rounded face to be honest i never really thought of it till i was rushed into hospital one time & some young doc said oh youve been on steroids a long time you can tell by your round moon face !!! it left me very upset ..but it did spur me on to loose weight & thankfully i have now lost over 4 stone in a year n half & my moon face as he so politely called it has now gone back to looking soo much better & nearly how it used to be given a few added years toll lol xx the puffyness i had has totally dissapeared from everywhere i dont look bloated anymore so i guess its never too late ,i would add to make sure your taking something for your bones as ive only revcently been given meds for it yet have been on very high steroid doses for years .xxx good luck n remember it may take a little longer than others to loose the weight but its worth getting there in the end xx
Jenna I am in exactly the same situation and, not to put too fine a point on it, I hate myself. I avoid mirrors at all costs and only leave home to go to hospital appointments. Even then it's a problem because I have nothing tht fits - even shoes.
I am also struggling with heart failure - to my mind a result of the enormous amount of weight put on with the steroids. I don't know the acutal weight but I can tell you that I've gone from a size 18 (which I thought was enormous and disgusting) to a size 28 in the space of just over a year. I blame this weight for the strain on my heart. Much of it is fluid and I've just started to take water tablets.
I am in the process of medically reducing my steroid dose. 2.5mg a month for two months and then 1mg a month after that. The GP assures me that the weight will come off but I'm afraid that it's so much tht it can't possibly. Then I am going to have to diet and exercise - and I can't exercise because of the joint pain and... the weight.
I can completely feel for you-- in many ways, I don't like what I see in the mirror anymore-- it kind of disgusts me. Mainly because I start thinking negatively and telling myself that I've just been being lazy, even though I know that's not true. I guess I am also afraid of what others think, especially those (like my co-workers) that knew me pre-steroid. Actually I have had someone at my work make comments about my weight gain or my swollen face-- he actually said to me one time "have you been sitting around drinking lots of beer lately?" These comments are usually what bring on my depression over the way I look and make me feel angry at what the steroids have done to me. Although some of my weight gain is also from water retention due to the severe swelling I suffer from. But whatever the cause, I hate it and I hate the way I look, and I hate the way my clothing fits (or a lack of anything fitting); I don't even want to buy any new clothes anymore because it just makes me sad and upset. I haven't been able to wear a pair of jeans now for three years and have to wear "Crocs" because they're the only thing my puffy feet fit in. I even have had to make cuts in the sides of my socks because otherwise they are too tight and cut off the circulation.
But the worst part is probably the fact that I can't exercise because of being too sick, weak, and in so much pain. I want to just get up and go like I used to, but now its a very exhausting and painful task just to get up out of bed or out of chair to take a few steps to another room. And I also agree with you that the extra weight puts too much strain on the body, causing even more pain and exhaustion. All around, we just don't get a break, do we?
I completely understand my dr tried all sorts of meds for me but steroids 90mg orally was the only thing that helped way back in 2005. I was hospitalised for 18 months as i also needed iv i went in hospital at 7 stone 7 pound and with in 2 months i was 15 stone and left hospital 17 stone 9 pounds. I was full of stretch marks all over my stomach thigh and arms i hated the way i looked.I too felt really ugly and huge and ended up in a wheelchair with this horrendous disease. I was then put on Infliximab and managed to get down to 5 mg of steroids which i had never been that low before even at 12 i was on 60mg! Well as they were reduced i lost weight gradually but got stuck at 12 stone. I then went to weight watchers and managed to get down to 8 stone but was left with lots of skin which is ok with clothes on but not when naked. My partner says he doesnt see it he loves me but i think what on earth is there to like! I waS so pleased and managed to stay like that for 3 years whilst that medication was working. Infliximab stopped working and whilst funding was waited for i was put on steroids again along with loads of other meds. I again ballooned to 13 stone but again when i received humira again i lost it and got to 8 stone 8. I vowed i would never go on steroids again but when you are in agony and you know they help it is hard to say no. Humira didnt work as well as infliximab for me so a year and a half ini took 40 mg of steroids with it. Now on 90mg again with humira and leflunomide and still in agony i am now 13 stone 8 and hate it but what can you do. People look at me and laugh as it is a peculiar weight gain isnt it. People say you will lose weight if you eat less and exercise. Ieat like a mouse and exercise is impossible right now. I would love nothing more to load my babies in their pram and grab my 5 year old chocolate labrador and walk for miles. But i cant even make it to the bathroom most days so exercise is a mere impossibility right now. I am hoping when i see dr moots at this excellence centre that he will have some good treatment for me that works for me like infliximab did. I was a new woman on that!! I just want to be able to do what most mummys do and take care of my babies that mean the world to me. Good luck with the weight it is possible to lose it after steroids with some hard work.
I have put on 4 stone in weight in just over 3 years and am struggling to get rid of it. I watch what I eat but struggle to exercise due to pain and aches but over the last 3 months I have lost half a stone. Not enough but that was a struggle. I too get very low about my weight but the meds for me work and am still on steroids. I would love to come off them but unfortunately I could'nt risk the extreme pain again!
Hi, back in the 80's early 90's. I had severe problems and was put on daily oral steroids. This started with 5 mg and after 5 years almost non stop meds and upto 140mg daily because back then hardly anybody had even heard of BD. each time they started to reduce my dose, I would get a massive flare again. And of course when you restart a course it always had to increased. Still with no diagnosis I took the decision to come off steroids completely and have never and will never take them again. My reasons being the weight gain but more importantly the great highs and lows. I was getting very deoressed and towards the end suicidal. Eventually after 12 years I got my diagnosis and tried all kinds of med but eventually found one that worked for me...COLCHICINE. I took it for 6 years and it had almost immediate effect. After 3 months no flareups at all for the whole time. Came off it due to small stomach bleed ( not necessarily caused by colchicine) and stayed well for another 3 years but symptoms are are now coming back with vengeance. I must say though that during the 9 years remission I had a wonder time. Got my confidence back, my figure almost, started back teaching and remarried. So we all have different journeys with this disease but we must persevere and stay strong. Things are much better now 25 years on, quicker diagnosis, better understanding, treatment and meds and of course this site to let it all out amongst others who understand what you are going through. Talk with your doctors, discuss other possibilities and don't be afraid to try, you will I am sure find something suitable for you.
Sometimes I don't get what are listed as "common" side effects of drugs. Rather, I can get the ones listed as "rare," some of which my doctors aren't even familiar with until I point out the drug insert that the pharmacy gives out.
I used to be so lethargic when ill with my Behcet's, rarely even getting out of bed. But prednisone (usually starting at 40-60mg and tapering down) would give me tons of energy, almost a "high" where I couldn't seem to stop talking and doing things. I also got insomnia, could hardly sleep, and did lots of vigorous chores and errands.
So I actually lost weight while on prednisone because I was going like a manic. However, prednisone caused nasty cystic acne on my face that lead to scarring, I bruised easily, and it caused my blood sugar to increase temporarily. My DEXA osteoporosis scans showed no problems.
I used prednisone during holidays and whenever I wanted to travel so I would have enough energy. But frequently, when I would finish tapering off it, I would get depressed for a few days and was told this is normal for some patients.
After taking prednisone on and off for the first 15 years of my Behcet's, I suddenly swelled up all over with edema (water bloat) from my feet to my face. Apparently, my body decided that it was going to react to the steroids and cause edema as a side effect. Again I was told that this is a rare side effect, but it has prevented me from taking oral prednisone for the past 11 years.
Even if I use topical cortisone cream on a skin ulcer, I can get some swelling in my feet and ankles as a reaction. My doctors say the swelling is not dangerous because it's not an allergic reaction, but I could hardly wear pants and shoes when it happened because I was so swollen.
My doctors never know what to expect when they give me a medication, so I'm careful to read the drug information sheet and watch for uncommon stuff. My doctors laugh at me and say they never know what to expect with me and my Behcet's. Whenever I see a new doctor, I caution them that "I get weird stuff." As time goes by, they see what I mean.
I really hate those ugly purplish stress marks.. I think the fancy name for it is "straie"-- but whatever you call it, its not very pretty. My skin is also thinned and looks so stretched out that I'm afraid it'll just tear open. I am also prone to getting ulcer outbreaks in the areas where I have these stretch marks and they can get really deep because the skin is already fragile. My biggest fear is that if I can lose some of the weight and get back some shape, how much excess skin will I have.. I can only imagine this ugly picture of me with hanging, wrinkled skin all over. But I guess I'll deal with it at the time when and if it happens. Did the purple marks eventually just fade on their own, or did you use some kind of cream or oil? I'm not so much worried about the marks because that can be hidden with clothing.
I now have confirmed heart failure - we are just awaiting to find out the exact cause prior to treatment. My gut instinct was that this was caused by my drug cocktail but today I found some research that says corticosteroids increase the risk of heart disease including heart attack, heart failure, and stroke.
Before ever using them I would say 'never' but when the pain gets bad it's hard to decline. I have never been on massive doses - I think 25mg is the highest - but I have been on them fairly consistently for two years, perhaps a bit longer (time runs away with me).
One has to decide whether to go for feeling normal and take the side effects, including the horrible, ugly weight gain, or suffer. Every time I go for the steroids. It's difficult not to.
I'm sorry to hear this Di-- heart failure is certainly not something you want to hear-- I can only imagine how scary this is for you
I feel the same way about steroids though-- when you are suffering in so much pain and have so much uncontrollable swelling/inflammation, the steroids really are the "instant miracle"-- its just that later on, you realize just how bad they can be and regret giving into them. We just don't have it easy, in any way. No matter what we choose, there's always going to be suffering involved and something bad to deal with later on. Behcet's ishould be called "beshits disease."
I have been on steroids on and off for ten years. non stop for three. I have blown up like a balloon, lost my hair and teeth. eye sight is iffy and a list too long to bore anyone with. I never had trouble with my weight, hair or teeth before. I also do not recognize myself when I look in the mirror. I have severe edema to where wearing shoes is difficult. I am currently slowly coming off of it and it is not fun. But although I am extremely fatigues I feel stronger and I know I will pull through this. herbs and vitamins help alot. good luck and hang in there
Exactly my case and thoughts.. In my case I think the high came from the prednisone preventing my immune system to react with inflamation to allergens, so no inflamation means no pain or fatigue associated with it.
Im a very healthy person except for my chronic inflamation which manifests in the skin and build up of tcells
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
After 16 years I've made it onto the treatment ladder
LDN low dose naltrexone
Finally, starting Remicde!
Alcohol intolerance and behcets?
