I’d really interested in hearing from anyone who has been told they’ll be on predisolone for good.
I’ve been on it for 13 years, varying doses but never got off it. I was on mycophenloate and then rituximab but have been advised that just steroids will be my recommended medication to control my symptoms now, as I’ve had so many infections over the last few years, so not to have further rituximab.
I was always hopeful that I would at some point come off steroids and although I'm only on 10mg at the moment it feels a bit scary to stay on them for good with all the risks.
I’ve been lucky that I’ve never gained weight but always been worried about the hidden side effects.
Can anyone share their experiences and their understanding of the long term risks.
Thanks so much
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Galaxy2
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My husband is now off Rituximab after his IgG levels were so low that he was getting constant infections. He's now on long term antibiotics and a wait and see regime. Been on steroids since 2010, up and down, now on 5mg pd. When he's feeling better for a period, we may try to get him down to 4mg.
Thanks Nadine, I'm on and off antibiotics. It's hard isn't it, I too would love to reduce my pred further but I also know I need it to control my symptoms
I have been on Prednisolone since 2015. I am currently down to 5mg, reducing 0.5mg a month. Last year I was told that taking it for so long had weakened my hip flexor muscles in my left leg so much that I can no longer take my weight on my leg. I am doing exercises to strengthen the muscles in my left thigh and hip but have to use a walking stick to get around. I wake every morning and as soon as I move the pain in my left hip is terrible, I use a microwave hot bag to get some relief and take 2 codydramol tablets.I think some of the pain could be from a trapped nerve in my back, I am thinking of seeing a Chiropractor if the exercises don't help.
Thank you for this, that's interesting, I seem very injury prone in recent times and have wondered if the steroids contribute to this. I do hope you find out the exact cause and it improves for you
I have PMR, I had the first symptoms over 20 years ago but wasn't given a diagnosis or treatment for over 5 years. I have now been on pred for 15 years, for all except a couple of years at above 10mg, for over 3 years, from shortly before Covid until the middle of last year I was on between 15 and 19mg per day in order to be able to function as sole carer for my husband until his death after which I had a massive flare necessitating the 19mg. Since then I have been put on tocilizumab and have been able to reduce the pred to 7mg, at 6mg I develop quite severe bicep tendinitis and am aware of poor adrenal function but am stable at 7mg.
The main fears doctors have concern weight gain, steroid induced diabetes and osteoporosis. I had gained weight with undiagnosed PMR because I was no longer able to exercise properly and comfort ate as I was in constant pain. I didn't gain more weight on pred, it just rearranged itself, except for about 6 months when I had to be switched to methyl prednisolone because prednisolone isn't used here. Then I switched to prednisone and over the following 18 months lost about 35lbs which was pretty much all the steroid weight plus some of the PMR weight. I also adopted a low carb diet - which many people on the HU PMRGCAuk forum have found helped them either lose weight they had gained with steroids or to avoid gaining weight on them. That also helps reduce the risk of steroid induced diabetes - my Hba1c has never risen out of the normal range. I had a dexascan done a couple of months after starting pred which was at the better end of the osteopenia range, the last one done in the spring showed a bone density in the middle of the range despite having taken no bisphosphonates, just calcium and vit D. I have just had the first of 3 bisphosphonate infusions because an x-ray identified a possible compression fracture of a vertebra.
Used carefully, pred is a very effective antiinflammatory and manages symptoms well. Lng term, the greatest problem is suppression of adrenal function in stopping the production of the body's natural corticosteroid, cortisol. The longer you are above about 5mg, the harder it is to get that aspect of adrenal function to wake up and since cortisol is essential to life, if it isn't being produced naturally it must be replaced - which pred does fairly effectively although it can't provide the boosts that may be needed in an emergency - serious illness, injury, emotional stress without taking a higher dose briefly.
If you are able to use it for flares of symptoms but reduce the dose between flares and can get to a relatively low dose, it isn't that bad to live with. There are risks with pretty much any long term medication - look at yours with rituximab - and one thing I haven't suffered with pred is an increased rate of infections though some find they develop more UTIs. But for the last 15 years I have had a far better QOL than I did with untreated PMR - and there is no other option in the UK for PMR.
Thank you, you are always so informative and helpful. I am lucky that I have never gained weight or developed an increased appetite and my blood pressure is the low end of normal. I have had dexascans over the years and am aware of the risks. It's tricky as pred for me has controlled my symptoms but the rituximab I felt protected me from flares, which can come on so quickly. I suppose I need to find a dose that keeps my symptoms at bay but also gives me a level of protection.
What is important is not to overshoot the dose of pred you need - if your symptoms return, or flare, more than once at a similar dose then that is your body telling you that you have arrived at the dose you need FOR NOW. It doesn't mean you won't get lower, just not at the moment. If you do overshoot a bit, the inflammation will build up, like a dripping tap fills a bucket. The trick is to find the dose that just stops that. That means small steps and not rushing from one dose to the next because it takes time to know what you are on is still enough.
I’m 50 now and have been on prednisone since I was 18 so over 30 years. I believe they have kept me alive and some sort of quality of life.
I have paid the price I now have osteoporosis and have had both pubis ramis fractures which meant being on crutches for a while. They can cause fast growing cataracts so I had both of these replaced 4 years ago too.
Finally I have a collapsed left foot arch but this has been helped by measured insoles and wearing a certain kind of trainer.
I’ve had Rituximab too which I seemed to tolerate however unfortunately in January I had a heart attack which has led to renal failure so I no longer need Rituximab and hope for a new kidney one day
Hi, good luck with your journey, it really is so different for all of us, depending on our particular disease path and our medics experience and views, and they are all different in their views. I have moved treatment centres and seen the pro's and con's treating me.
The American Vasculitis Foundation site has an excellent video by Peter Merkell about GPA treatments and how treatment paths have changed over the last 10 years - I found it super helpful especially the thinking now about low dose steroid use ongoing. Thinking has shifted massively in the last 10 years and different medical institutions have differing opinions but I do think this USA view is helpful.
Its the video called Granulomatosis with Polyangiitis - orange background.
Link below will get you to the video library on the site then scroll down.
I like Peter M - met him at an OMERACT meeting some years ago. Interesting what he said about monitoring patients in remission MORE than those under treatment. Wish the UK thought monitoring was important ...
Hi I have to say the video was a complete eye opener for me as the thinking is moving so fast on all of this, I thought Peter seemed very switched on from the video, interesting you met him....
I was in a seminar-type break out group and they were talking about patient experience of something, use of corticosteroids and adverse effects I think. A physio said the obvious "why not ask them?" and Peter announced there weren't any present - strange when at least 1 in 10 of attendees at OMERACT are patients - so I piped up and pointed I was there and last time I'd looked I was a patient! We had a long and really good discussion about how actually patients don't always mind pred if it has given them a decent QOL in the medium term at the very least. Peter and a few other doctors came up to me afterwards and said they had never considered it that way before! And actually, since then I feel there has been a shift in the fear that seemed to have developed over using pred at all. It is a balance - his Goldilocks syndrome - and I don't mind being a bit overweight if it means I can move freely and function. For us of course there is no other option - NICE is unlikely to let us have any of the emerging biologics when the majority of PMR patients are retired, though that is changing as the retirement age rises and more younger patients are diagnosed.
I think all 3 of those sound very receptive docs - the Italian guy is down the road from me. Beginning to wonder if all Italian rheumies look in their teens - my guy here is maturing now but still looks about 25!
Especially when you have pain on top. I'd had horrendous back pain for about 18 months, the Pain Clinic who are usually good here got all iffy at all 3 of the solutions I found that reduced the pain. And then I spoke to my rheumy who did an ultrasound guided steroid injection into the right sacroiliac joint - 5 months on it is still improving and life feels worth it again. Pain Clinic said it was too risky as I'm on anticoagulants. In early November I'd bought a rollator because I could barely walk into the village and really struggled if I carried a litre of milk home, Never been used now, don't need it!
Yup joint and muscle pain hit me hard a couple of years ago, started with stiffness in my back after car journeys and then chronic back pain - everyone assumed I had put my back out even though I have never had back issues and I am 56.
Then the pain went into my hips, shoulders and knee, I ended up on crutches and never thought it could be GPA as GPA had hit my airways but I had been drug free and in my mind in remission for 3-4 years - as a result of covid I wasn't being monitored at all as I didn't have any issues.
In desperation and in agony I went private to see my consultant and he confirmed it was GPA flaring. 1 week on 20mg/day steroids and I was pain free and it took me 4 months to get completely off steroids, 20 - 10 fine then 1mg at a time. It took 9 months for pain to return but this time a shorter and lower dose (10mg to zero in under 8 weeks) and I am pain free and off steroids.
That's interesting - I knew that GPA and GCA can have similarities but that suggests it can cause PMR-type symptoms too. Over the years there have been one or two people on our forum who I'm sure didn't have GCA but more likely GPA. I should have thought about it as one relatively recently had had a positive ANCA when first diagnosed with "PMR" - which is actually a rule-out for PMR but the rheumy ignored it.
I hadn't heard of PMR just googled it, and reminded myself what GCA is - interesting reading.
I am GPA and always ANCA MPO positive. I think with my type of GPA the disease moving into joints and muscles isn't that unusual albeit very boring! Its had a crack into my left eye a couple of times but low dose steroids sort that out fairly quickly too.
I have never been under Rheumatologists - I tried to move across when the joint and muscle pain was my main issue but having been told at a private consultation by a lovely lady Rheumy that her clinic would treat me and do loads of joint scans etc if I moved hospitals, my GP referred me to that hospital and guess what - the NHS clinic appointment was with Nephrologists and I was told Rheumatology manage large blood vessel vasculitis but small and medium is done by nephrologists in renal, so I changed hospital and ended up in the same space so went back to my first hospital - crazy!
I have learnt now that GPA ANCA PR3 positive normally goes for the kidneys but GPA ANCA MPO positive more likely doesn't go into the kidneys as in my case but cranks around blowing in and out, so you get really good phases and crappy ones.
I'm out to enjoy the sun - a rarity enjoy your day and good to chat - thanks
Hi ,I’m on 10 mg of steroids, over the last 10 yrs feels I am mor on them than off them , consultant told me I don’t respond well to drugs , had rituximab, on biological which is 3 rd one , I have fallen several times fractures in back , osteoarthritis in knee and hip ,just had recent fall fractures to foot and wrist , I can only say when you in a lot of pain you will try anything, make sure you take vitamins D , C ,things that will strengthen bones .👍
Thank you, I'm sorry to hear about your fractures, a wonderful drug but yes it does have it's downsides. I have always taken adcal with it so just hope that will help long term
I've been on oral prednisone since 2006. Tried to come down doses several times planning to come off altogether. On 4th attempt the rheumatologist said shall we just accept a low maintenance dose instead. I've mostly been on 5mg. Sometimes I have to increase to manage a flare. I don't have diabetes or osteoporosis. Hypertension is medicated. BMI just above normal range.
PMR and GCA are not the only conditions requiring long-term corticosteroids. Some patients with autoimmune neurological conditions start on up to 100mg of prednisolone per day. They struggle with tapering and other immunosuppressive drugs for the rest of their life.
Thank you, I started off with a different autoimmune disease and now have several, it seems they just keep being added to. Yes, I think I'm accepting that I will be in that situation for good now
Personally I don't think it is different ready-to-wear items - we have our own a/i disorder tailored to us: I have PMRpro syndrome, you have Galaxy2 syndrome. And I know a few rheumies who agree. There are already a few named disorders that have been reclassified now they can look below the surface.
I hope you are right. Despite an atopic immune system, I still don't have a diagnosis after 55 years of slowly worsening symptoms. Doctors just keep telling me which off-the-peg diseases I don't have! They only stopped telling me there is no link between atopy, chronic fatigue and other autoimmune conditions when I discovered these studies:
Atopy increases risk of chronic fatigue by up to 259% :
Dear Galaxy2 . I've been on steoids since the early days when I was put on them when I was 13. Don't be to down hearted. I am now 80. I was on them for nearly 30 years before a cosultant said we have to get you off them. He eventually did , I then had a period without but I'm back on a low dose now. I have auto immune disease and I've had rituximab. I was born with asthma and had some pretty awful experiences . Having been isolating all through Covid and beyond I'm still alive. I think I can honestly say that without cortozone I would have died years ago. Thanks to steroids I'm still around. My immunity is 9/10's below what it should be. I'm very proactive and very persevering with excercises. Best wishes
Thank you so much, that's quite inspirational. Amazing to think you have been on them for so long with other immune suppressants too. Yes, I know I too am very grateful for steroids.
Dear Galaxy 2. I didn't mention that I also have Asthma, Brochiectosis, COPD, Lymphodemia, Both lungs have collapsed and have been stuck up again. Just confirmed likely Kidney Cancer. etc( even more) On the bright side I have many wonderful blessings. Don't give in ! I have just started on line singing lessons in an operatic style. Two things have kept me alive: Prednisolone and more importantly my faith. My advice : Take your worries to God. God Bless
I've been on it since 1997, 27 years ago, and have been told I'll never get off it. I can't lower my dose below 7mg without my cerebral vasculitis flaring. We have tried throwing numerous other drugs at me, which have helped me get back down to 7mg after a huge relapse in 2004. But I can't go lower.
I am fine with this. Steroids have made me 50kg heavier (8 stone), and together with my periods stopping in my 30s (thanks toxic chemo cocktail) have given me osteoporosis. But they keep me alive. I am very lucky not to have developed eye problems, though it's probably just a matter of time.
My disease is really difficult to treat though, and this is my situation. For other people the decision is a different one. And their disease may respond better to other drugs.
But yup, I'm happy enough. Glad still to be alive honestly.
I have discovered that both Vasculitis and its medications affect us all differently, but the more you know about other people's experiences, the better prepared you are to look out for signs and symptoms yourself. You have already been on Prednisolone a lot longer than I have, but here's my experience for your interest. I was diagnosed in 2015 after damage to my lungs and kidneys, and put onto a fairly high dose of Preds, along with Mycophenolate after an allergic reaction to Azathioprine. After a month I suffered a pathological fracture of the spine, which I put down to the preds. But as they were necessary, I had to accept this, and the osteoporosis. The preds dose was reduced over time, to settle down to 10mg per day. During 2019 my rheumatologist recommended tapering off the preds, very slowly. I followed the routine for several months, during which I started to suffer unusual bouts of nausea, light headedness and occasional vomiting. After a total of 10 months this worsened, and blood tests revealed that my kidney flow rate had dropped so dramatically that I ended up in hospital. A biopsy revealed that my body couldn't cope without the preds to make cortisol. A temporary high dose was given, and it was decided to keep me on a daily dose of 5mg for the foreseeable future. So far this seems to work.
thank you May for sharing that. When I was successfully having rituximab regularly I did get right down to 2mg and was surprised after being on steroids for so long that I could cope with that. We're all different though as you say, I do hope it continues to work for you
hi I was diagnosed with GPA in 2005 and have been on various levels of Prednisolone along with cyclophosphamide then Mychophenolate before remission in 2017. After attempts to reduce the prednisolne from 5mg tests showed adrenal insufficiency. I have therefore been advised to stay on 5mg for life and increase the dose when I have infections requiring antibiotics. Interesting one consultant many years ago said that she is convinced that continuing on low dose steroids prevents flares.
I have to say I am one of the lucky ones who hasn’t had a flare, whether it’s because I am on steroids for life who knows but a more recent consultant said I was on 5mg prednisone not as active treatment for GPA. Which ever way, prednisone helped save my life, for which I am very grateful.
Dear Galaxy2. As I explained I was on steroids - Firstly TRIAMCINOLONE followed by Prednisolone for nearly 30 years for chest probs. I got off them for a while then got Anca Vasculitus and put back on 60 mgs Pred followed by many treatments,and finally Rituximab. I'm down to 5mg Pred now ( must be enteric coated!) Would be a lot better if I didn't have so many other things. I know exactly how worrying this can be and I just want to help you not to worry too much. You do become more prone to infections but I am always alert. My immunity is almost non-existent so I have been isolating and being careful . I never go in amongst a lot of people and I always wear a mask.( everybody stares now. It was common place during Covid but most healthy people have forgotten that now. You have to persevere and a determined and positive attitude really helps. I'm also a great beleiver in gentle excercise. We have to try invoke our natural self healing. A few years ago following a collapsed lung ( chest probs from birth) I caught a really dangerous chest infection and after receving 10 days of the latest medical treatment I was sent home from hospital withought a solution, At first I was devastated but I thought I'm not having that and started excercises and my own research and upon return for a hospital check 9 month's later on was told you don't appear to have the infection anymore! I have had infections since then including the really dangerous one . I persuaded my GP to let me send in a sample for checking if I gat any signs of an infection. that way I can get treatment as quickly as possible. I'm not trying to blow my own trumpet I'm just trying to be as helpful as I can to anyone suffering these terrible ( not always understood by most doctors) diseases. God Bless
Hello, can’t really help in so far as advice but you’ve my sympathies. Both blessings (in that they keep you upright) & curse errr everything else with them. 23 odd years for me so far. At acute stage of EGPA 1k x 3 methyl prednisone via a drip over 5 days on and off.
Now 10mg daily Never been lower than 7.5mg and that’s when I usually fall of a cliff health wise. Just actually been discharged after two week hosp stay partially due to an adrenal crisis.
However I’m now on long term Fasenra / Benralizumab injections every two months so while I was once definitely in the never getting off the ‘roids camp…
I seriously hold out hope that the Benralizumab will enable me too or at least go much lower than I’ve done in the past. Think Fasenra is a bit ‘post code lottery’ drug at the moment but might be worth chatting to your spec. About it. Best of luck and be well!
I’ve reluctantly been on 5mg a day since 2021 in combination with a DMARD (first MTX then AZA) after my consultant, decided short courses as needed weren’t cutting it. I have mixed feelings about pred. I have definitely experienced side effects (having to keep an eye on my weight and blood pressure being two of them) but it has also given me my quality of life back.
I’m due to start trying to see if I can wean down or off it, after upping azathioprine in a few weeks.
For me, the challenge has been getting repeats off the GP. Every so often one of them or a pharmacist technician at the surgery decides to reject my prescription request as “I’ve been on them too long” and need a med review. I can’t book my own appointments at the surgery any more, so I end up filling in an eConsult form asking for a med review appointment and if it’s OK to stop taking them as I have a blue card that says I shouldn’t stop them suddenly. That usually sorts it but it still happens at least twice a year. My consultant just sighs when I mention it.
Hello, Like you, I had mycophenolate and then rituximab which sent my vasculitis into remission. Once I began to feel better, I started to very slowly reduce preds. Over about 16 months, I managed to get down to 2.5mg daily, but due to cortisol deficiency because of my long term and high doses of prednisone, I've reached the final level and cannot reduce any further without feeling ill. I've thought about this a great deal and inorder to place it in context is important. If you're pre or post menopausal, wishing to have children, young in age , been on preds for a long time, then it's going to colour your view of the outcome. You've clearly come a long way and have been exposed to some pretty powerful drugs. Making yourself well, fit and healthy is important, as well as having regular bone density scans etc. Just try to reduce preds slowly( get a prescription of 1mg) and think about months, rather than weeks to reduce the dose if you can. Enjoy the ' well time' you have , make the most of it, enjoy yourself, enjoy the company of others and above all, be well within yourself. I know it's not something you wish to take for ever, but you've already achieved so much by becoming well again. Best of luck to you. 🌞
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