Hi all
I have had GCA for three years and PMR two, I am on 9mgs pred and again Rheumy says I cannot stay on it and has prescribed MTX to be taken for three months alongside 9mgs pred. After which I will stop pred. Does this sound right? I have no faith in what I am being told but at least RA has now been ruled out and she accepts I have PMR.
Your advice on this site is exemplary thank you so much.
Does she give some provision for continuing with pred if MTX does not improve things? Because while it works for some, most of us have found that MTX did not help.
No I am just told I cannot stay on pred
But why is she saying you can’t stay on Pred? Unless you have other health issues that make it impossible, then it’s proven to work in PMR and it cannot be down to cost - it cheap as chips..
Plus as we’ve said, after you have been in it so long, it cannot be just stopped - that’s just dangerous.
I do hope you don’t stop pred at 9mg, it could be disastrous. Methotrexate is a DMARD which is often prescribed for rheumatoid arthritis, another auto-immune disease. It happened to be found that it could sometimes help PMR/GCA, but not always. It is not meant as an alternative to pred. but as a supporting product. I am not sure your doctor knows that much about taking steroids long term. Can you see someone else?
She (she is a nurse practitioner) said the MTX would take over from pred and when I queried adrenals she fluffed over it. To be fair she relays the conversation to the rheumatologist but I have no faith in him, there is another dr at the hospital who has GCA/PMR on his cv and I could get a private consult with him but am worried about any conflict this might cause and whether I can continue as an nhs patient.
I’m in the same position as you as I have a consultant who was really pushing me towards MTX but I had no confidence in him, he’s very arrogant not interested in listening or discussing anything. From our first consultation I think he saw me as an elderly lady who would just listen to what he said and agree. ‘He was very evasive in terms of coming back to me when raising concerns over my tapering plan ( which then made me ill) and didn’t answer a couple of other queries. We have a private Spire Hospital nearby but the GCA/LVV specialist is part of the same NHS team as my consultant (possibly more senior) My husband kept urging me to seek a private consultation if I’m not happy. But like you I don’t want to cause waves and not sure how it would work in terms of continuing NHS payment for medication, scans etc . My consultant has already gone into a bit of a sulk because after a lot of on line research and seeking comments from this forum I decided at this time MTX was not for me. I really couldn’t see it would be of benefit and may give me side effects I really don’t need. I’m now on 12 mg Pred so plan to carry on tapering slowly down and see how it goes. At the end of the day I feel we very much have to make our own decisions and not helped when you have a consultant you don’t have faith in. Good luck on your journey
Same here. After research and consulting with my GP, decided to not take the MTX. I am on 15.5 mg again (down from 30 mg - 2 years ago this summer) and going to attempt a taper in another week..maybe, because my neck still feels a little stiff/pain. I am lucky that my docs allow me to do as I see fit now, going by my symptoms. Please stand up for yourself when necessary, it's not their pain or life to live.
I am appalled at how many incompetent, arrogant doctors there are out there playing fast and loose with their patients' lives and well-being, especially the rheumatologists who are paid big money to know better. It really is criminal. Make waves! Report these people! Best of luck to you. I know how scary it is to be forced to do something that could be painful and dangerous (not allowed the medications you need) and not even respected enough to be listened to and encouraged to be a partner in your health care. It seems there are 20 incompetent doctors for every one who is knowledgeable. Best of luck to you!
The trouble is Nurse Practitioner probably will relay the conversation as if everything makes her look good if she thinks she is doing the right thing and knows all about PMR/GCA. Doctors can be pretty bad at knowing about drugs, I should imagine nurse practitioners are as bad if not worse. I thought I read in the BMJ last week that Nurse Practitioners will have to be supported by a doctor a lot more in the future due to all the problems some seem to have been creating. You should be able to see the rheumatologist on the NHS theoretically. What about your GP have they given up as several do when they are not sure about PMR? As SnazzyD says be firm and try out the suggestions she makes.
I am very fortunate to have a wonderful Nurse Practitioner as my primary health provider. She diagnosed my PMR just by testing my inflammatory markers, educated me about the disease and cautioned me about using Pred and not terminating it without a slow taper. She is now working with me to taper in a way that is working for me and just asks that I keep her informed of how I'm doing with my tapering schedule so she can prescribe knowing I am on a safe path. She's the best! I wish everyone had such good care.
had GCA for three years and PMR two, I am on 9mgs pred and again Rheumy says I cannot stay on it
Why not? Many on here have both GCA and PMR for a lot longer than 3 and 2 years respectively..
As has been said, MTX doesn’t work for everyone. So then what? You cannot just stop Pred at the dose you are on..
Think you need a new rheumy.
I know and it's because of these long term pred users that I can query what they are telling me. She says the MTX will take over from the pred....?
She says the MTX will take over from the pred
For some it does, but not all, and it can take up to 12 weeks for you you really know. If it does, then you still need to reduce Pred sensibly...many do get down to zero but remain on MTX afterwards [speaking to someone at local group on Tuesday about this - and she said it's working for her].
But it's not a like for like swap...and you have it see if it works for you. Honestly it should be your choice to try it... not be railroaded into it by a rheumy.
Plus I have a feeling Prof Dasgupta once said he doesn't think MTX works in GCA... unfortunately it was in a zoom, meeting and not in writing..
It might be worth trying to see other doctor privately - and if he works in same hospital he would probably transfer you to back to nhs after initial consultation... don't know.
So they think you are ‘stuck’. As far as I can see you have 3 options.
1. Demand you reduce at your own speed (say 0.5mg drops) and perhaps have a deal for 6 months to show a downward trajectory with no flares. I had a quick read of previous posts and you were told to reduce. In what steps did you do this over what period? It didn’t seem very steady which is why this suggestion. I am assuming they have cited no specific clinical reasons why you have to stop.
2. Try MTX to see if you are one of those for whom it is useful. If you are then bear in mind you can’t just stop Pred because you may run into trouble with adrenal insufficiency. This is very likely if you stop it at 9mg; still plenty to be suppressing adrenal function. You may still need the Pred in partnership like many do, albeit at a lower dose level.
3. Ask why Tocilizumab isn’t being offered. Is it because they are saying it’s now PMR and it is only available for tricky GCA in the UK?
Sit tight for more and hopefully better suggestions.
Hi I have GCA and PMR diagnosed January 2024, I don't know if this will help at all but just to tell you about how I am tapering. I am on 9 mg now too. As advised by my Rheumy I went on 15mg weekly MTX three months ago as I kept getting flare ups after less than 30 mg pred. Fortunately I am ok on the MXT and now tapering down 1 mg every 4 weeks. Though after a flare at 9 mg I went back to 10 for 4 weeks after phoning my Rheumy. Now on second week of 9 and ok so far.
I feel after reading advice given in the forum that I may start on slower tapering once further on as I had no idea about adrenal function, none of this has been mentioned by my Rheumy or doctor. Thank goodness for this site and the brilliant helpful advice given.
Good luck and best wishes.
0.5mg per 4 weeks is more doable generally than 1mg, especially if you hit the adrenal ‘wall’.
I am going to bring this up with my doctor, that sounds much better. My flare up after going 10 mg to 9 felt bad. My neck and right arm were very painful, particularly the top of my arm and shoulder, lasted three weeks, also aching in my jaw, thanks SnazzyD, I'm certainly going to do this.
my rheumy does 0.5mg over 8 weeks from that dose.... I'm more than happy with that. I do the very slow taper, so the last 2 weeks are at the full reduced dose and then start again. Hope that makes sense.
Hi Sophiestree yes it does make sense, I think my Rheumy has put me on too fast a taper after reading yours and SnazzyD's reply, the slower taper feels more comfortable, and rather than getting flare ups and back to 10 mg again. Thanks for your reply.
MTX didn’t work for me but did allow them to move me to Actemra after a year. I think it is worth trying but just to share the advice I was given when I started it which was to wait 2-3 months before trying to start the Pred taper - so if you’re only been given a 3 month supply it’s v short to evaluate whether it will help to taper Pred . If your rheumy means do 3 months with also 9mg Pred and then continue MTX as you start the Pred taper that would seem to make more sense as MTX takes a while to kick in.
Hello, others have answered this comprehensively but I thought I’d add my experience. I’d been on pred for a year for PMR, starting at 25mg and tapering down. When I got to around 5mg I flared, twice. At the second flare my rheumatologist introduced MTX alongside the pred. She also increased my pred by a couple of mg to tackle the flare, and slowed down the tapering plan to 0.5mg per 4 weeks. It seemed to work for me, I’d no more flares, got to zero pred a year or so later and a further year later came off the MTX. I’ve now been off MTX for over a year and all is well so far. All the best to you going forward.
I totally agree with what everyone who has so far replied has said. My Rheumy (a Professor, no not Gupta) pressured me to take MTX but when I got it home and read the 4 pages of A4 possible side effects (yes please do read them) I decided it was not for me. I am currently on 4mg. When I asked the Professor what the side effects were he shrugged his shoulders as though they were insignificant! I complained and 10 minutes after I sent the email, I received a telephone call from one of his junior doctors who respected my decision and agreed that it was probably inappropriate and agreed that I could stay trying to reduce but if I got to a stage where the symptoms were not kept at bay I would stay on that dose. I have in writing now.
So there is an alternative. Stick at trying to reduce from 9mg, do not take MTX without fully understanding the side effects and perhaps the nurse practitioner needs some education.
Good luck.
Sorry should have said I am on 4mg Pred.
Hi P,I have GCA and PMR,just over 2 years.Tried MTX and Leflunomide,didn’t agree with me.Was offered TCZ at quite a low dose of Pred but after listening to advice from people,declined it.Am currently on 13 mg due to taper to 12 shortly and once I reach 10 mg,I shall go even slower ,1/2 mg every 6 to 7 weeks depending on how I feel.My Rheumy asked my dr for advice on my tapering😱😱I told them both that I had been given a sensible plan from this forum and both have agreed to my way of thinking.Think they were both at a loss of what to do with me.Speak up for yourself P,I had to in the end!Your body,your disease.Maybe tell them what you have been told on here by the WISE ONES!Good luck!xx💐😜🤞🏼
Oh to have a flexible consultant like Angelsmummy. When I wrote declining MTX I did mention that I had undertaken a lot of research and sought experiences from others suffering this unpredictable illness. I received a rather unhelpful letter which included reference to something I had already read and that only referred to MTX having modest effect in 3 random trials of GCA/LVV patients. So I didn’t find this anymore convincing. In his letter he also made a jibe at my seeking views from those who are not medically trained So I don’t think Angelsmummy’s suggestion would work on him. In my response I did say I felt people who had been living with and managing this illness over 5/10/15 years had built up their own level of expertise and this and sharing experiences of others has given me a lot of support and suggestions which I found really valuable as an addition to professionally trained medical opinion and advice. ( I did stop myself from saying which can only be theoretical). It will be interesting to see whether he mentions anything about this in my next review in a few months time. In the meantime I feel given all I know I’ve made the best choices for me. Perhaps you will now fair better with you Rheumatologist. I hope so
Morning O,could you not talk things through with your dr,or even better,find another Rheumy?SO annoying when people like you are not allowed “ a voice”.Just HATE this attitude that some of these professionals take.We are entitled to have opinions and should be allowed to express them when necessary.Take care of yourself,xx💐💐😜.
Thanks. After my diagnosis consultation I did raise it with my GP (as in the main I have had excellent care from the practice) to see if there was anyone I could be referred to but didn’t get anywhere and as it was early days I let it go. I saw the vasculitis society on line and got a really quick and helpful response to my queries and they also provided the links to the forums . This has been so helpful and together with building up my knowledge and understanding of vasculitis diseases(as much as one can) I feel I can continue with how things are for now but will certainly try to change consultants or put in a complaint if I get any more issues with him. He is such a contrast to the excellent and caring Respiratory consultant I had before who on transferring me said I was in good hands as he was one of the best Rheumatologists. By coincidence I’ve got very chatty with the nurse who has been dressing a leg wound for many weeks, she has the same consultant and said she had real problems with him at first but his attitude changed completely when he realised she was nurse. So I know it’s not just me.
Hope all goes well,and that if in the future you have to think about change of consultant etc,you get better luck!Often think that when some of the Drs qualify ,they think they should be given a halo as well as a stethoscope.Some deserve one but many,many don’t!xx💐💐😡😜😇😇
Hello, Penguins and everyone, I was diagnosed with PMR 2 years ago, GCA 1 year ago and most recently LVV (aortic vessels) a month ago. My rheumy, like so many, started pushing me to take methotrexate last year and I did try for several weeks, but it disagreed with me (and i with it) so I discontinued. I was tapering nicely up until end of January 2025, with no pain or symptoms at 4mgs. But my crp number went way up and a CT scan revealed the LVV. So up back up to 40mg of prednisone and am starting the taper all over again. The advice we all received consistently here on this form is to go much more slowly with the taper than our doctors recommend. Much, much more slowly! This is the best advice and the best approach to getting over these conditions and tapering successfully.
EULAR( the international standards) tells doctors to prescribe methotrexate and then other "steroid sparing" drugs to help us taper off prednisone. But I cannot find any compelling evidence in any of the studies available that show methotrexate works (in the case of GCA/LVV) or any of the other steroid sparing drugs. There is evidence in the case of PMR that it may aid in the tapering of pred. But all inconclusive when it comes to vasculitis inflammation. Here's a quote from one paper:
Methotrexate may have moderate effects as a steroid-sparing agent, but it is not clear at present whether its adverse effects outweigh the adverse effects of prolonged corticosteroid use. There is no proven role for any other cytotoxic or immunomodulatory medications in GCA at present. Aspirin appears beneficial in retrospective trials in preventing ischemic complications of GCA, but no prospective trials have been done.
And here is the link annualreviews.org/content/j...
And here is a good quote from the horse's mouth:EULAR recommendations suggest tapering GC to 15–20 mg/day within 2–3 months with a goal of ≤5 mg by the end of 1 year, while the ACR/VF guideline emphasizes minimizing GC exposure but recommends this be a joint discussion guided by the patient's values and preferences (13, 14). [That's right--your values, your preferences, not the doctor's]
and link to the article
annualreviews.org/content/j...
Good luck everyone! I'm so glad we have each other--there is so much collective knowledge and experience here.
The guidelines have always said tapering should be adjusted to patients wishes and disease activity -but somehow many doctors don’t read that caveat!
Fortunately mine did- firstly the ophthalmologist (following sight loss) and then the GP, but she was very cautious having completely misdiagnosed me initially.
I don’t think that will work. I went on MTX when I couldn’t manage to taper past 17 msg pred. The MTX did help me to taper but very slowly. After about a year and a half (if I remember correctly) I had managed to get down to five then stuck there for about another year. Then got down to three mgs. At no point did I feel able to stop the pred even at the lower dose. Eventually the rheumatologist said I could stop the MTX. I felt so much better without it. I’m still on 2mg pred. In my experience MTX is ok for helping with tapering but it’s not a substitute especially as you’re still on a fairly high dose. I hope you get sorted.
Hi Penguin, I tried MTX and felt horrible on it. It did not help me. My doctor was saying the same thing as yours. I stopped it and just kept doing a slow taper like Dorset Lady's plan and I close to 3 years now and I am down to 6mg Pred!! Finally. I hope I can continue to reduce---but slowly! I have both PMR and GCA.
I was offered methotrexate about 15 years ago for psoriatic arthritis. What struck me was that I was given an extremely through health check and then told that, because of the side effects, I would need a blood test every 2 weeks. I was also slightly perturbed at how the hospital seemed to consider this a big step. My research indicated that it also can make you very vulnerable healthwise. This rang all sorts of alarms, how can I go on holiday with a blood test every 14 days, would I be at risk just being abroad with associated heath risks. It sounded more like imprisonment, so on the day of the injection I explained that I was not prepared to proceed. The hospital were not pleased!
I’m now on Preds for PMR with the same reumy ( who’s very nice) and I noticed that my record says in capital letters NO DMARDS.
So, for what it is worth I keep away from methotrexate but everyone is different of course but there do seem to be a lot of downsides.
Sorry you are in this quandry. I'm in the States but I know Dr. Dasgupta in the UK doesn't say, "You cannot stay on pred." I've had GCA since August of 2019 and have been on Pred and Actemra since. I'll be going to 7mg next week, but my doctors plan to keep me on 5 mg of pred for the remainder of my life along with Actemra.
I know I read on the forum people in the UK see private consultants...I'm sure others will give you some direction in that arena. My best to you, but unless there are other issues, I don't see why you can't. My very best to you....💞
No it DOESN'T sound right - since at 9mg pred, you MUST taper from there to allow adrenal function to return before you can stop the pred altogether. She can't fluff that - stopping pred like that is likely to result in an adrenal crisis and that could kill you unless recognised and treated in a timely manner.
The rheumy is talking rubbish - I've been on pred for 16 years and even on Actemra I need 7mg to manage the PMR. At less than that I start to get PMR symptoms returning but also clear evidence my adrenal function is absent. Pred hasn't killed me yet!! ANd I am under one of the top names in the PMR/GCA field in the world.
The NP is out of her depth - is that at your GP practice or the hospital, a rheumy nurse? Either way, you need a discussion with your GP who hopefully is better informed and also in a position to challenge the NP.
Where in the UK are you? Seeing a good rheumy privately who is NOT In the same NHS department is probably a better idea.
Who is it exactly who is saying you can't stay on pred? If it is the NP I wonder how much she knows about PMR/GCA and that pred is the primary option longterm. It isn't the same as an inflammatory arthritis where pred is only used in flares and then switched to MTX. What she is suggesting is what would be done in that case - but after 2 years on pred you CANNOT, MUST NOT, stop pred suddenly, She could kill you.
Thanks for advice and confirming what I thought. I have tried to get a gp from my surgery to help me but they just ring the hospital for advice. The NP is from the hospital rheumatology and she confers with consultant. This is Eastbourne on the South Coast (Sussex). I am afraid she doesn't like it if I query her and when I increased the pred she told me off so I am treading carefully but if after 6 weeks of pred and MTX she tells me to stop pred I will refuse and suggest tapering. Meanwhile will see how it goes and look for a private rheumy.
You could try PALS to see if you can be switched to a different contact than this NP who I would say is exhibiting signs of taking more responsibilty than she is qualified for - and dangerously so. They may be able to get you some time with a rheumy f2f or flag up that a patient is struggling with the relationship.
Methotrexate
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Cough cough cough - Methotrexate?
Frustrated re Symptoms suggesting GCA
