A lot of posts discuss tapering off steroids as a priority, but I'm wondering if there are some members who are happy to remain on a low dose of pred (say, around 5mg or below) and have their GP or rheumatologist's blessing to do so. I mention this because during my last visit to see my rheumatologist for my blood work results which were "excellent" (his words) and my ESR was 4 (originally 90) I asked if I should consider a very slow taper from 7.5mg to 5mg. I was diagnosed in August 2020 and have remained on 7.5mg since October 2020. He said that I could do so but why experiment, and run the risks of flares, when 7.5mg gives virtually negligible side effects, that I'm well and active, and PMR will run its course anyway. Obviously I have to take the proper precautions - calcium, Vit D3, calcium rich foods, etc. to prevent osteoporosis. I understand the issues with regard to tapering as my mother suffered with PMR from her mid-70's until she died and her life wasn't made easy due to the fact that her GP wanted to get her off steroids as quickly as possible with the result that she yo yo'd up and down and was never pain free. Mind you, the doctors weren't as enlightened as they are these days. Looking for some positive comments....... thank you.
Remaining on a low dose of pred indefinitely - PMRGCAuk
Remaining on a low dose of pred indefinitely
Discussed this issue with my doctor on Tuesday. I am keen to get off steroids completely as I have other medical issues & take a lot of drugs. Currently on 5mg & going to try 4.5mg for a month, then 4mg for a month etc. He said he would be happy if I can get to 3mg without the issues I had last year when I tried. His colleague, who spoke to me because my doctor was on a rare week off, said he keeps some of his patients on 5mg indefinitely. In conclusion, a low dose with one doctor was 5mg, with another 3mg. BUT my doctor is very familiar with my whole medical history & the other one, who was very helpful at a time I was struggling, had never spoken to me before!! I think a lot of these ‘general questions’ are hard to answer because we are all individuals & have different medical histories, ages, circumstances etc, but hope this helps…I still aim to be on the lowest dosage that keeps disease away, but hope for zero!
There are quite a few yes. And I KNOW that here in northern Italy my own rheumy says he has a lot on long term pred - just like me - but I am unusual in needing such a relatively high dose (10mg is just a bit too low). Prof Dasgupta has also said he keeps patients on 2-3mg indefinitely to prevent relapses.
Why are you tapering such large amounts? I'd lay odds that if you went 1/2mg at a time you would get lower - but 2.5mg at a time is an enormous leap unless you spread it over 3 or 4 months at this stage. The point at which it is fair enough to say enough reducing varies from person to person - and how much effect the low pred dose has on them also varies from person to person.
So if your doctor is happy - the question is: How happy are you?
I'm not considering tapering in such large amounts and I think I mentioned above that I asked my rheumy if I should consider a very slow taper from 7.5mg to 5mg. I'm happy enough at the moment to follow his advice but I'm thinking a bit more long term and really wanted to hear other folks experiences. Thanks for your reply.
Sorry - I was thinking in terms of why think so far ahead? Take it 1/2mg at a time - it all adds up in the end. Every bit less is a benefit in the end. But at some point you find a point where it becomes a struggle - then you debate whether it is worth it.
Are we talking just about people who have PMR with what Prof Dasgupta does or does this also apply to GCA? I'm on 3mg and after three relapses am wondering whether to stick at this or make another effort.
If you are relapsing at about the same sort of dose - then that is your body saying enough. You aren't heading relentlessly to zero - you are looking for YOUR lowest dose. And what he is saying is really that that sort of dose is perfectly safe to stick at - if that is what you need, that is what you need.
I think I'd rather be on 5mg or lower indefinitely rather than 7.5mg - then your adrenals have more chance of functioning.
Guess you trying 7.5-5mg because of difficulty in getting smaller dose tablets in Cyprus - but you could try a slower taper (in time) - see either of these -
healthunlocked.com/pmrgcauk...
healthunlocked.com/pmrgcauk...
Thanks for your reply. Can confirm that only 5mg are available in Cyprus, but I can cut the tablet into 4 and do a very very very slow taper over months if need be.
I have a pill cutter and cut 5mg in to two pieces. Before cutter, I found a really sharp small knife worked quite well. I am at 3mg, bur on birthday this coming Monday plan to try to taper to 3mg. During the past 3 years have learnt to go very slowly
My doctor told me 4 years ago that I would probably be on Pred for life. I am on 6mg atm. I am 82 however!
I'm not that far behind you! 79 this year. Thank you for replying.
I must admit personally I would like to get to zero rather than taking pred for the rest of my life, but that is really a convenience thing from my point of view. No need to order pred, no need to remember to take it!
Really interested in all these views.I have no answer. I am still on 8 pred tablets a day and hoping to reduce to 7. I am 79 and longing for more wrinkles which would mean my cheeks were not so swollen and I might be able to lose some weight.
Beethovenite.
My GP has told me to stay at 10 mg as he’d rather his patients had quality of life, than try to reduce and be miserable x
Fair enough - but could you get to a lower dose than 10mg? Because if you CAN, it is far better long term.
I’ll still keep trying very slowly but at least I now have A GP who’s got my back , rather than A Rheumatologist who demanded I reduce to zero whatever problem appeared x
I am thinking now I might be quite happy on 2.5 for some reason that number sounds just right. for a long long time and not go through a flare again. I realized I DID lower way too quickly from 3 to 1.5 ... (3 months) hence the flare. Here's a question. 2.5 dampens my osteorarthitis pain and other inflammatory things along with the PMR.. which is more dangerous 2 ibuprofen a day or 2 mg. of prednisone???? OR not with!
Know which I'd choose!!!!
Assume pred?I use NSAIDs regularly, would a low steroid holding dose be better for my body?
Each year of ageing makes it harder to cope- 60 soon 😜
For me - definitely pred at that sort of low dose. For you, how low a dose? NSAIDs do have a lot of unpleasant potential long term effects, especially on heart and kidneys and I think pred is less of a problem. But which works better?
Hi there. I have now been on 3.5 mg pred. daily for about 1.5 years and very stable and quite contented. Each time i try to taper, yes slowly slowly slowly, my symptoms , or symptoms similar to pmr return, so back on 3.5 mg i am ok again.
My GP has been supportive all the way. I am 70 now, and have had PMR from may 2017.
I would like to get to 2.5 mg and happy to sit on that as long as it takes, but that is more my plan, than that of the GP….i am going to move back from NZ to live in Europe and hope to find a GP that has similar thoughts, which is a bit of a worry I have to say, but that is another story….
Succes, follow your dreams!
Surely the objective is to live pain-free, so why agonise over pred numbers when you get to the lower zones. I have been down to 3mg, then to 60 suspected gca and after 5 years very slow, now at 5mg. For me at 90 I don't worry about long-term effects, so not even thinking about reducing. Just aiming for painless time which is the best target to enjoy old age.
Totally agree.
If I ever get back down to 5 I'll stay there as trying to get below that caused major problems. As a result I'm worse than ever and on 17.5 now. But everyone is different and the majority do eventually taper, but only if the PMR isn't active. I have come across stories when the pandemic first started of people who were on low doses eg 2 or 3 being rushed off steroids because it was believed at the time (doctors panicking) that it would be bad if you got Covid, and then they flared up and got PMR for the 2nd or even 3rd time. Added to that is what others have said about Dr Dasgupta keeping his patients on a low dose. Most of the bad side effects of steroids can be mitigated at low doses. Some researchers have theorised that being on steroids may actually have a positive effect including Matteson but say more research is needed
I have had PMR for three years and in that time I have had 2 attempts to get below 5mg and had two awful flairs one of which was so hard to get into control. I have now successfully got back down to 5mg of pred and feel really good.
I have no intention of trying to reduce again for at least a year. My doctors seems to agree this is a good plan.
I hope what ever you decide works well for you.
I feel the same, I’ve had two horrible flare ups trying to taper down from 5mg. Thought I’d cracked it recently, when for 3 weeks I manage to taper 4mg, seemed to be coping. Then I got a chest infection, back up to 5mg again. I’m thinking that maybe my body tolerates 5mg and should stay on that dose but my Rheumatologist is now again suggesting I try Methotrexate. I am aware, of the problems associated with taking steroids long term but to put another unproven medication for PMR into the mix is not the route I want to take.
I would NEVER take MTX if I was managing well at 5mg. Part of the problem now is the return of adrenal function as well. Most good doctors stop panicking about the dose once you are below about 7 or 8mg - 5mg is seen as very good. How long did it take you to get to 5mg?
Agree with your comments re. MTX. I suspect that my rheumy will recommend that I go onto it when I've been on pred for 2 years, but I will resist if I can get to 5mg by that time.
I really wish you all the best of Good luck with tapering your pred. Until I joined this amazing group, I didn’t have a clue about PMR, there are so many lovely knowledgeable folk on this site. I’m grateful for all their advice. It is a real strange disease and so different for everyone. I was on 6mg for almost a year before getting down to 5mg, 2 flare ups put me back. My rheumatologist wanted me to try MTX then, she gave me a leaflet about it. That actually made my mind up that it wasn’t for me. Then something clicked and 5mg worked, that was 6 months ago. My rheumatologist is pressing me to decrease further, too quickly I think. I started 4 mg, 3 weeks ago, I just had a chest infection, so back to 5mg for a week. This PMR is certainly a test of endurance, that’s for sure. I wish you well.
Thank you so much for your comments. I’m determined not to take MTX. It took me about 6 moths to taper down to 5mg , I stayed at 5 mg for a month, .then began tapering down by 1 mg each month thereafter.. I have been doing so well on 4mg for past 3 weeks, until getting a chest infection. My doctor wanted me to go back up to 10mg with antibiotics for duration of the chest infection. We came to a mutual understanding that I’d increase to 5mg and monitor my progress. I’m pretty disheartened at the moment, it’s like 1 step forward, then 3?steps back . Sorry for being so negative, I’m not generally like this. Thank you again, this group is such a great support.
To get to 5mg in 6 months is amazing - the mean time is 18 months!!!
Thank you. That’s really good to know. I’m going to start back on 4mg tomorrow and see how my body reacts in couple of days. I think, I’ve finally realised that there could be a few bumps in the road ahead and won’t put myself under pressure to go faster, despite Rheumatology’s apprehension with steroids and their apparent preference with MTX.
I could accept their reference for MTX (maybe) if it worked reliably in PMR. There is absolutely no evidence it does. If it did, they would start with it rather than pred. And there have been several people on the forums who were on MTX for rheumatoid arthritis and then developed PMR, needing pred to manage the symptoms. Hardly a strong positive vote for MTX is it?
Could’ve agree more. For me personally, It’s effectiveness in treating PMR, is still unproven. Not to mention the possibility of any adverse side effects. I am fully aware, that almost all drugs can cause side effects for some. However I feel, in this instance that the devil I know is better than the devil I don’t know Thank you so much for your help.
How I feel. But MTX was horrible for me - couldn't have continued with it long term. Even to see if things would improve.
I’m sorry about that. It must have been horrible for you, at least you gave it a try. I have a friend who takes MTX for RA and it works for her. She has no side effects with it. The thing is PMR is not RA. It’s just as we said on earlier posts, the benefits of MTX, for people with PMR are inconclusive and the adverse effects to not bode well.
Dear Pixix, Yes to your question. I remain on 2 1/2 mg of pred Every day for the rest of my life. They keep my adrenals functioning or replace their sluggishness. One time I stopped for awhile and I was soooo tired and sluggish I went back on prednisone. I have no side effects. My Doc suggested this and I shall continue. Good luck to you!
That gives me hope!
I’ve been on pred tapering slowly since 2019, been able to get to 3 mg happily with no issues, I was adamant that I wanted to get off the steroids but as soon as I hit 2.5 mg I have pain and stiffness. I see a really good rheumatologist who thinks and I agree that quality of life is more important than being off the med. So now I’m on a maintenance dose as he calls it, for life in his option, but I’m no opposed to it now but will wait and see.
Hi Daisy 1624 and thanks for replying. You've done really well getting to where you are on a very slow taper and it may be that 3mg is your maintenance dose. I'd like to get to 5mg on a very slow taper so I might start doing so in a couple of months when the weather in Cyprus is a little warmer.
Wow, that’s excellent, we’ll done you. I’m so happy for you. I’m thinking, that I may a battle ahead with my rheumatologist. My life, my body. One thing I do know, is that pred has enabled me to lead a normal life, apart from the flare ups of course! I can wash and brush my hair and dress without pain and play with my Grandchildren and my dogs. So if I have to stay on low dose of pred, then do be it.
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