Good news about steroids!

[oldtimer2]

I thought I would share the results of a recent study. It looked at 1112 (wow!) people with Rheumatoid Arthritis who were either taking 7.5mg or less of prednisolone regularly, or a control drug which wasn't a steroid.

After two years, those taking prednisolone weighed on average only around 1kg more (0.4 - 1.8Kg) than the control group. And there was no difference between the groups when blood presure was measured.

Having had a massive weight gain on high dose steroids personally, followed by a very long battle to get my weight back down once on a maintanence dose and also requiring anti-hypertensive treatment, I found that very reassuring - as I cannot now come off the low (5mg) daily dose.

I know there are other people here who are similarly on a low maintenace dose, so here's the good news for you. It would be better not to need them, but we have to cope with what we've got.

For those who like to read it for themselves the original study is at Ann Intern Med doi:10.7326/M23-0192

[Amnesiac3637]

Thanks for this. I have been on Prednisolone on a maintenance dose of 7.5 mgs for 34 years (with the odd blips up to 12 mgs ) and have never put serious weight on. I’m 71 now and weigh normally about 9 st 3lbs which has fluctuated very slightly over the years from 8 st 10lbs to now at 9st 4lb (due to a herniated disc so not much exercise for the past couple of months 😟). Flabby yes, weighty no 😀 . My blood pressure has always been completely normal.

The problem comes with the increased hunger if you’re suddenly put on high doses as then weight can shoot up as you just cannot stay away from food! Then it’s a real struggle to get the extra pounds off and that’s miserable. There’ll no doubt be others who’ll either agree or disagree as we’re all so different but that’s what I’ve experienced over all these years of steroid use - which I couldn’t have done without.

[medway-lady in reply to Amnesiac3637]

I had the moon face, swollen neck and the weight gain was huge but the Nephrologist told me it’s not down to increased hunger but steroids alter the way that the body uses food for energy. It did come off but did take a long time and in my case it was the only treatment at very high dose that was a known medication for an AKI. I’ve never had steroids for RA luckily. Xx

[Fra22-57 in reply to Amnesiac3637]

Yes I agree.no weight gain really only but over lockdown as little exercise and more food. blood pressure ok.I do at times am hunting around house for food so it's best not to buy sweet stuff.I don't eat alit anyway but wish I had been given something alternative to steroids13 years ago instead.I do have to take such a difficult of mix of meds with all my auti immune diseases

[NanaFifi in reply to Amnesiac3637]

Gosh! Finally found someone who has been on steroids for many years! I have been prednisolone since 1984 when I became seriously ill while pregnant with my daughter.

Every time the doctors try to wean me off I have a massive flare up (I have RA and Lupus)

I’ve put on a fair bit of weight over the last few years but that’s the menopause for you 😂 That and the fact that I could happily ice cream and cake all day long 🙈

I’ve certainly not gained weight on 5mg a day and blood pressure has always been fine. I do have thinning of the skin which is a nuisance but without the steroids my daughter wouldn’t be here and I would have had a very different, less mobile life. X

[Amnesiac3637 in reply to NanaFifi]

You’ve been on steroids even longer than I have! I just can’t get off them -never have been able to since I started in 1989 - as I flare immediately and badly under 7.5 mgs and always have so have had to stay with them.

Couldn’t have done without them and although I now have glaucoma (treatable), osteoporosis (treatable) and thinner skin I too wouldn’t have had a life or mobility and, through all the many, many drugs I’ve had over the years, I think I can say the prednisolone is the only truly effective one.

I think guzzling cake and ice cream, menopausal or not, is a fitting way to say ‘up yours’ to RA and its cousins and aunts so keep on keeping on! X

[KittyJ]

interesting, thanks for this. I was on pred for 25 + years and, like Amnesiac, didn’t put any weight on nor have I had high blood pressure and couldn’t understand when people said pred made them gain weight but we’re all different I suppose 🤷🏻‍♀️

[oldtimer2 in reply to KittyJ]

I found that on high dose steroids (not now I'm on only 5mg) that I had no control over my appetite - I could just eat and eat - and feeling rather miserable did so to start with! I found that i had to write down everything that I ate in order to keep things under control.

[sylvi]

I have been on a 5mg dose of steroid ever since i was diagnosed over 20yrs ago. xxxx

[Runrig01]

I’ve been on steroids for 11yr. Unfortunately I gained a lot of weight round my middle, and the moon face. Despite being down to 4.5mg my shape has never returned.

Steroids turn off your HPA axis which is responsible for your body producing its own cortisol. I started getting symptoms suggesting my adrenals were struggling. My gp referred me to an endo. 3 weeks before that first appointment I had a severe stroke at 52, caused by my body not having enough cortisol, I was having an adrenal crisis. I was on 4mg prednisolone at the time. I was diagnosed with adrenal insufficiency, as my cortisol was undetectable, when it should have been >500. I’m now on steroids for life, any stress good or bad, brings on low cortisol symptoms such as: nausea, headache, lightheaded, low BP, slurred speech, staggering etc. Even getting in an arguement can trigger symptoms. I also have to carry an emergency intramuscular injection of steroids to administer, if I’m vomiting, In an accident, unable to take by mouth, diarrhoea are some examples. I regularly inject because I get severe migraines with repeated vomiting. Hubby has had to be trained as well. So personally I’d like to see the risk of adrenal insufficiency being highlighted more, it has a huge impact on your life, having to preplan your day, and be prepared to updose when needed to prevent a full blown crisis. It’s basically Addison’s disease but caused by steroids. So weight and blood pressure may be the least of your worries. It’s not called the devils poison for no reason 🤗

[oldtimer2 in reply to Runrig01]

I agree that there should be more information about the risks of adrenal insufficiency. Many doctors and nurses seem unaware of the possibility although I did have my morning cortisol level checked when I was in hospital in May with low sodium levels.

However, steroids can also be a 'life-saver' as well. Certainly saved my life when my bone marrow packed up from auto-immune disease. With any effective treatment it is always a matter of balancing risks and benefits.

[Runrig01 in reply to oldtimer2]

Oh I agree, and my steroids were started for polymyalgia and GCA where steroids are the only treatment. I just feel when it’s not the only option other avenues should be explored. Asthma is a perfect example, where biologics are now showing excellent results, but due to costs many are kept on steroids, either inhaled or oral steroids as they are a much cheaper option. So many asthmatics develop adrenal insufficiency, none of the ones I know were warned of the risk. My 4th rheumatologist was the first to warn me, when she needed me to do a rapid taper for an mri scan looking at inflammation. She warned me of the potential signs to look for. Even so my gp felt that my nausea, headaches and lightheadedness were due to ENT issues, and I had to push for referral to an endocrinologist.

[Mmrr]

I managed to take off 3 and a half stone while taking various dosages of steroids usually around 10 / 12 mgs a day.More recently I have put a lot of weight back on I assume because of immobility, rather than steroids.

[Angels54]

I am on 10 mg can’t seem to get any lower 👍

[Lolabridge]

That's encouraging for me - thanks for the info.

I'm on a slow taper off Prednisolone and have got down to 4mg, but hoping to get off it eventually 🤞. I wish I hadn't needed them (again!) but changing biologics from rituximab (wonderful but zapped my immunoglobulins) to adalimumab (useless for me) to tocilizumab (working thank goodness), I needed something to manage symptoms in between as I'm not on methotrexate. And the weight just piled on. 😢

It doesn't help that I can't walk👨🏼‍🦼 (waiting for ankle replacement surgery) and being immunosuppressed the Covid risk makes it impossible for me to go to a gym or swimming pool. So trying to eat less 🍽and doing some Yoga 🧘and Qi Gong (mainly chair based no way I can do Lotus!!). I think it will be very slow progress ...