Has anyone had side effects from long term steroids?

[JCloth]

Has anyone had any serious side effects from taking long term steroids? I have been diagnosed with polymyalgia but finding difficult to reduce the steroids without reverting to severe stiffness and pain. My doctors are adament that I come off steroids having been on them for 3 1/2 years.

[Lolabridge]

Are they offering you an alternative? Hopefully they have suggested something to help you. If not I would ask what they suggest.

I have developed Osteoporosis but whether that was just due to the steroids or other factors I don’t know.

I suspect that there’s also a general plan to move as many people off certain drugs at the moment and steroids may be on that list.

[JCloth in reply to Lolabridge]

They have not offered any alternative and I have been waiting to see a specialist since March 2020. I am going to have to go private now to get any help

[Lolabridge in reply to JCloth]

It’s outrageous you have been waiting so long. Sometimes we have to make a lot of noise (and often) to be heard or our specialists can assume we are ok.So if you still can’t get help from the NHS then do see a private consultant to get things moving. It’s often a good idea to choose one who also works in NHS so you can transfer to their NHS list later.

Good luck!

[Al1954 in reply to JCloth]

I am on prednisone already for 10 yeaes plus Enbrel witch had to due to infection after covid.i have never received jabs for covid.Still with 4 mg of prednisone.Going back to enbrel monday.i have very bad ostoporosis but manage to do a normal life.I am 68 yeaes old

[tyncwmmarchhywel]

its impossible to come off without other medications .what dose are you on I havebeen on 5 mg for 3 and a half years for r a nothing else on offer for me biologics and the like dont suit and i end up in hospital take care

[JCloth in reply to tyncwmmarchhywel]

Thanks for getting back to me. I am on 5mg prednisolone but I am not really comfortable. I do increase the dose for a few days if I have a real flare up but the doctor is not really happy with this because of the potential side effects. I have reduced to 5mg in December

[sylvi]

I have been on them for so long and i wonder to what they are doing to my body. xxxx

[Hidden]

I took high dose steroids when diagnosed aged 17 with Stills Disease RA . I took them for under 4 years and the only side effect was my hair thinned and changed colour and went from wavy to straight.

[tyncwmmarchhywel]

hi lolabridge do you mind me asking what strenghtyou were taking

[Lolabridge in reply to tyncwmmarchhywel]

I started on 10mg and briefly had to go up to 15mg in a bad flare. Once I was on a Rituximab and it began to work I started to wean myself off Prednisolone very slowly reducing the dose by no more than 1mg per month. Getting off the last 5mg was the hardest.

[tyncwmmarchhywel in reply to Lolabridge]

thank you for your reply but would you have changed the dose without an alternative med.

[Lolabridge in reply to tyncwmmarchhywel]

My RA was so severe and sero positive I needed much stronger drugs anyway. The highest dosage of Prednisolone I took was when I was between other RA drugs and having to have steroid injections as well! No way could I have coped without the Prednisolone tablets at that time!

I’m glad to be off them now as I had put on weight and developed the typical moon face. Thankfully that’s all gone now!

Isn’t there any other drug you can have than Prednisolone?

[Caribatty]

I am on Benepali, Hydroxy and Vit. D now. I just recently weened off 5 mg of Prenidsolone that I had been taking since 2009, more at the beginning. It has taking me from February to December with the help of other medication. It has not been easy and many times I had to go up. The reason why I decided to do that, it was the change in my body. My GP thought I had Cushing’s syndrome due to taking it for so long. I was getting fat, but only around my stomach, shoulders and neck. My legs and arms were actually skinny. I started to have awful stretch marks in my breast which were very sore (it didn’t help that I has shingles at the same time 🤦🏻‍♀️). My skin is so thin that anything damages and take moths to repair, if it does. I think there were a few more issues, so I took the decision after talking to the rheumatologist to try to do it.

I have to say although he gave me some medication to help, he was not happy that I was doing it. I am actually seeing him today, first time since weening off and my blood results were not good as I think the other medication affected the liver results so we may have words. I don’t have a flare at the moment, but I do have more pain that I had, but I have off all medication for 3 weeks because of the blood test. Sorry for the long story, what I meant is that if you are doing it, make sure you have some reasons and that the rheumatologist or/and the GP are helping as it is very difficult and tough. Be prepared to try many times and go up and down. Good luck. xx

[jarujuda]

Hi, When I get a bad rheumatoid flare the only thing that gives me relief is a course of steroids 😕 I probably take course about twice a year. The rheumatology nurses are not happy with that but the consultant is ok with it. I take 12.5 methotrexate jab once a week but it only keeps it at bay.

[auldreekie2]

Hi I was on steroids for about 6 months, quite a high does, 25 mg, then 15mg ,10mg then 5mg.Then one of my eyes were not quite right, went to the optician, I had a fast growing cataract, I was 54 at the time.

Got sent to the eye hospital, I asked the consultant about it, he said steroids do a good job, but they have a lot of side effects and my cataract was one of them.

[Mmrr]

I've been on varying dosages of oral prednisolone for over 4 years (maximum 20 mgs day).I'm presently on 12 mgs.

A DEXA scan was normal 2 years ago. I seem to be doing ok on them.

[cathie]

I"ve never taken them for long periods. But I do know that when I have them as part of another procedure they send my blood sugars sky high. Not good for diabetes.

[Oscardoggy]

Hi Benjo0I have RA and poly myalgia and

I have been on Prednisolone for over 12 months. I started on 15 mgs and got down to 9 mgs but I had a really bad flare in October following a bout of pneumonia and the dose was gradually increased to 30 mgs. I am eager to get off them completely because I am not happy with the side effects which are weight gain, moon face and visual problems. I am currently on 12.5 mgs. I am also on methotrexate, Sulfasalazine and Orencia. My rheumy has said once I get 10 mgs to reduce by 1 mg per month until it is stopped. Hopefully this will work. Hopefully a much slower reduction will work for you.

[JCloth in reply to Oscardoggy]

Thank you for your replies. I have been reducing my steroids by 1/2 mg per month but cannot get below 5mg without severe relapse. I will keep trying

[Lolabridge in reply to JCloth]

I suggest you make a big fuss and say you need alternative meds if you have to come off steroids!! It’s unreasonable to be asked to give up effective meds if you still have active PMR.

[Maisie1958]

Hello JCloth , I started on oral prednisolone for PMR in May 2015, and I don’t think I have lasting problems 🤞- bones fine, blood glucose ok etc although I have been on 5mg or below for for most that time. It’s allowed me to have a very nice life until seronegative inflammatory arthritis came along too. I’m still on a low dose of pred(1.5mg daily) and now MTX 15mg once a week and doing well atm. If it’s really PMR I think you will need steroids until it decides to go into remission but obviously you want the lowest dose that’s effective. If you go on the PMRGCAuk forum on HU if you haven’t already looked, you will get a lot of advice on steadily reducing steroids and how to minimise side effects. There is a list of FAQ s etc or repost there. The charity has a helpline as well. All good wishes.

PS I was very fortunate to see a fabulous rheumatologist privately last Spring after phone consultation with disinterested GP saying it was “wear and tear” due to my age and PMR would only last 2years maximum! I was transferred to her NHS list so if having a private consultation is an option then I would recommend it sadly.

[JCloth in reply to Maisie1958]

Thank you Maisie that is really helpful. I will make an appointment and speak to the charity helpline too. Fingers crossed.

[Blodynhaul]

Thankfully I haven't had enough steroids over the years to have had permanent adverse effects, but my mother had multiple short courses of high steroids for decades for her asthma and she developed osteoporosis(needing alendronic acid etc & she broke her pelvis without knowing), glaucoma (needing 3 different special eye drops) & extremely thin skin that bruised & tore at the slightest touch (many times needed nasty wounds dressed etc).

Like others are saying, it definitely sounds best to come off steroids wherever possible, but with some alternative plan. Really hope things will work out for you Benju0 X