Weight Gain?

[Jeanabelle60]

Hello, just a quick question, do daily doses of Steroids put weight on? I think I may have to go on then in the NY as I have used up all the Bio's that are available to me. The thought of going up maybe 2 sizes fills me with dread.

[nomoreheels]

Hiya Jean. I posted about how I don't put weight on with steroids a few months ago healthunlocked.com/nras/pos... & threw out a question why that could be. It received some interesting replies! Hope you have some positive ones but it seems in the main most people are apt to notice an increase in their weight. I've always only ever been prescribed deflazacort since being diagnosed in Spain & my Rheumy here in the UK continued prescribing them long-term at low dose but it seems prednisone/prednisolone is the norm in the UK.

As an addendum to my original post taking more care about how much sat fat intake I have in my diet made no difference, in fact my LDL figure rose by a few points & now prescribed statins so maybe it's not so much to do with what I eat but more what RD has done to my heart. I suppose that could explain why I don't put on weight whether on steroids or not. I meant to question my GP about this when I went for the results of 3 months trying to control my cholesterol level myself but clean forgot. Must make a point of noting it next to my appointment date to ask at my next review in Jan. Sorry rambled on..... no Jean, I don't put weight on taking steroids! x

[Jeanabelle60 in reply to nomoreheels]

Thanks for getting back to me so soon.....its just that another RD sufferer mentioned about weight gain while on Steroids. I've only ever had injections so I have no history. When I was first diagnoised 4 years ago I lost so much weight as the disease was uncontroled. Once I was put on the Bio's it stabelised. I have maintained a size 12 ever since and I really don't want to have to start to battle my weight again as I have had to for most of my life. I just wondered if such small doses would add weight.....anyhow I know my disease is uncontroled now as we have just had the lowest temps of the year and I didn't have to even turn the heat on!!! I know crazy. My body boiling was an awful symptom my first time around. When I went to bed last night I had the window open and the duvet was pushed to the bottom of the bed.......I hate all of the symptoms but I hate this one in particular as there is no way to control it......I once told my Consultant that my bottom sheet was like the "Turin Shroud".......he did giggle a bit......

Did you have a nice C'mas......I'm still nibbling away at Royal Icing and Marzipan....and here I am talking about putting on weight....I have a cheek haven't I? XX

[nomoreheels in reply to Jeanabelle60]

It does seem a battle for a lot of people & I do sympathise but suppose I'm just predisposed to not gaining weight even on steroids, never more than from size 10 to a 12 all my adult life except when I was really quite poorly just before we were married & had a spontaneous pneumothorax & I've had oral steroids on & off all my RD life, since 2008! Been low on low dose continually since Sept 2011 except for 3 months waiting for a Rheumy to reinstate all my RD meds when we came back to the UK & still no change & seeing other people's struggles I consider myself very fortunate. I hope you're fine on them too Jean but do remember your Rheumy's putting you on them for a reason.

We've only had heating on a few weeks too for the same reasons as you but lately my h has really started to feel the cold, probably because of his heart situation but he still has the Turin Shroud effect (good description!) on our base sheet. Always had a dicky temperature control, used to convulse in his sleep as a boy he got so hot his mum told me. Thankfully no longer has that effect but hep a definitely still a hot bod!

We've just finished lunch with a nice peppermint tea & Christmas cake though no icing or marzipan, much as I love both, as his family crossed the border from Yorkshire & prefer it plain with cheese, odd lot! We had a quiet Christmas but hope you had a lovely one & now fully recovered from your trip to Edinburgh. All the very best for 2015 & I hope it brings you better health. x

[farm123]

For me it is a case of increased appetite in conjunction with less mobility. Have only had a couple of times on oral steroids but have had plenty of steroid injections into joints. I find that I want to eat more with steroids in my system which of course coupled with limited mobility/exercise means the weight goes up. I suppose it will depend on what does level you need as well.

Sorry to hear that you think Abatacept will not do enough for you now.

Farm

[Jeanabelle60 in reply to farm123]

Unfortunatly Farm it has stopped working.....i have noticed an increase in pain since about October but you know how you do you just put it down to something else and ignore all the signs. By early December I knew for sure because of the fatugue. I was with my Rheumy nurse a fortnight before C'mas and she more or less confirmed that it has stopped working. Seems this can happen with the Bio's. I'm sero negative and can't take MTX so I am limited as to what I can take......I'm just assuming that daily steroids is about all that is left open to me now. i really don't want to have to battle weight gain as well as uncontrolled RD.......thanks for your reply anyhow and all the best.

[allanah]

For me YES!!bloat moon face gain weight etc etc!! But when they start to wear of the puffiness does too xx

[Dixiedeane147 in reply to allanah]

Yes, I found that, as I stopped serious the moon face etc wore off thank coldness.

[Cornishrex]

For me, I've only had one steroid injection, but I lost 3 pounds over the two days following the injection. I had assumed it was water weight being lost with the inflammation being removed.... Perhaps wrong. I asked the rheumy in advance too and he said it wouldn't cause weight gain (Id just battled hard to get rid of all my pregnancy weight gain and Didn't want to start putting on weight again after just losing it all!)

[Jeanabelle60 in reply to Cornishrex]

I can understand that. I have had a few steroid injections and didn't notice any weight change but at the time I was in so much pain that I didn't really care.

This is all an assumption on my part that I will be put on Steroid Meds as a method of pain relief as I have used up all the Bio's available to me. As each day passes I can feel the pain spreading and getting stronger. I'll know more when I see my lovely Consultant on Jan 14th.

Thanks to everyone for their replys. XX

[burtonbradstock]

I experienced weight gain and my sleeping got even worse, I stopped taking them about 3 months ago and the weight is slowly coming off. I have had Rituximab infusions now

[Jeanabelle60 in reply to burtonbradstock]

How much to you take a day? If someone can't take Bio's what are they given for pain? When you stopped taking them did you go on something else? I can't take Rituximab.....nothing has been straight forward for me from I developed this disease 4 years ago......

[burtonbradstock in reply to Jeanabelle60]

I was on prednisolone 20 then 10mg daily, I stopped taking it when I had the rituximab, regarding pain I have co dydramol and paracetamol. Glad to be off steroids as I put a stone on in 6 months. The weight is going off slowly. I have continue with methotrexate as I have since 2002. I tried the anti tnf injections which made me very ill. Keep positive and all the best for the coming new year

[Jeanabelle60 in reply to burtonbradstock]

Thanks for your reply. As you can see almost everyone who has responded had developed a weight problem. I'd say I'm finished with Anti-TNF's, in fact i have been told there is none available to me now. I'm on 6/8 paracetamol a day and 100gm twice a day of Tramabol. I have 200mg of Tramabol in my medicine box if I need them. These leave me a bit doozy but i would prefer that to stones of extra weight. At the minute its anyone's guess what my lovely Dr Armstrong will come up with on the 14th......watch this spcae. X

[shareasmile]

I gained 10 pounds over a year and a half while taking steroids on and off. My last dose was an injection. Once it wore off earlier in December, I have lost 6 and am slowly getting back down to where I want to be. I try to avoid steroids as much as possible, but sometimes it can't be helped. I am hoping the Humira keeps working for me for the long haul!

[Jeanabelle60 in reply to shareasmile]

Humira can be a great drug if it works for you. As I've said I have been on all the Bio's available to me so I'm assuming that Steroids are all that can be given to me for pain relief.....I'm hoping I'm wrong......I really don't like the idea of putting on that kind of weight.....I'm 'busty' and five foot....10lb would look like 3st on me!!

[shareasmile in reply to Jeanabelle60]

Steroids are a miracle pain and inflammation reliever for sure. I hope that the side effects are minimal for you! And here's to hoping that a different and safe drug can be found for you soon that will give you relief.

[Hidden]

Over 3 years of taking them daily I increased 20kg in weight but I also went onto insulin which also puts on weight. I started on 20mg for RA and then decreased to 5mg but I kept flaring so settled on 7.5-10mg. However, in the end I had to go off the prednisone completely because I developed Cushings Syndrome (diabetes, high blood pressure, buffalo hump, moon face) and epidural lipomatosis (spinal compression due to fat pressing into the cord). It has taken me 6 months to lose 8kg but the moon face went soon after stopping the medication. The diabetes and the high blood pressure remained. I had spinal surgery for the compression and they changed some of my RA meds around to help with the flares. What I read at the time was that once susceptible people put on weight with steroids, it doesnt automatically drop back off and with me it hasnt. It certainly is a wonder drug for many but for me it has been a struggle. Just watch your sugars and keep to a lo-carb eating plan, that way it will also help with the waistline

[Jeanabelle60 in reply to Hidden]

god and I think I have problems. From what I've read here I think I will be looking for something other than steroids, if there is such a thing! I gain weight easily and have managed to maintain my size 12 and i really don't what to hate myself everytime I look in the mirror.......but then again I know what the level of pain is that takes me to the Rheumy ward looking for steroid injections.....thanks for the reply.

[Hidden in reply to Jeanabelle60]

HI Jeanabelle... Sorry, I didnt mean to scare you off them for life, just to relay some caution whilst on them in case you are unlucky.

Every med has a downside that "can" happen. As I said before, for most people steroids are a terrific and have wonderful results when taking them. I would just keep an eye on the sugars and carbs in case your blood sugar does rise. The other things you are very unlikely to get as they are very rare complications.

Ive been on and off steroids all my life for asthma or during times of severe infection and although my blood sugars rose, I always went back to normal after ceasing it. I never thought I would develop irreversible diabetes.

My problem was that I didnt keep an eye on my sugar level when I began taking it long term and I didnt try to control my carb or sugar intake at all so by the time symptoms appeared, I had a fasting reading of 19.6 (fasting should be less than 7). It took ages to get it down and by that time my pancreas beta cells had died which means taking insulin.

The reason I tell people my story, is that I dont want it happening to others if they can pick up on it sooner than I did.

Most people who go onto steroids say to me that their docs dont check the sugars routinely, you have to ask and since we have regular blood tests done anyway, its no big deal to get them to add a blood sugar level every now and then.

I hope that clears it up, I didnt want you too scared to take them.

edit.. Fasting BSL should be less than 5.5 for normal people and less than 7 when diagnosing diabetes. In between is pre-diabetic.

[Jeanabelle60]

Thanks, its just that you have been through so much. As we all know some of our meds can cause worse side effects than the origional complaint. I wish you all the very best no matter. I'll post again after I see my Consultant on Jan 14th, thanks again. XX