I have had PMR and GCA since 2019. During this time I have had many attempts at tapering down prednisolone and have had many flares. I have trie d MTX and Leflunomide steroid sparing medications. Both of these have had negative impact on me. MTX lowered my immunity so much it left me with permanent shingles in my left eye and I now take anti - virals and steroids eye drops each day to keep this under control. Leflunomide affected my liver results so much I was taken off this.I have been unable to be pain free for some time at a lower level of prednisolone, but was told to continue only taking 6mg of prednisolone daily by the consultant. I am now experiencing a flare once more and it has now been suggested I consider taking Azathioprine as a further steroid sparing drug. Given my history I am not certain about this. Has anyone else been offered Azathioprine? and if so, has it stabilised the PMR/ GCA. Also, what side effects, if any, have been experienced with this medication. Many thanks for any suggestions, advice and reflections on how I might go forward trying to manage these issues
New drug suggestion, Azathioprine: I have had PMR... - PMRGCAuk
New drug suggestion, Azathioprine
Azathioprine is not considered as effective as Methotrexate or Leflunomide. I suppose your doctor was just searching for another possible drug. In fact a lot of people never take a steroid sparer at all. You need to get the flare under control as PMR loves being in control if given the opportunity. Adding 5mg for say a week or so could hit it on the head and you could then drop back to the last dose where you were comfortable.
Thank you so much, I really appreciate your thoughts. It did feel as if the offer of AZA was the last thing left in the ' tool kit' and I have to say the thought of trying a further sparing medication which might lead to other adverse affects, as I have experienced with MTX and Leflunomide, is very disturbing. I was unaware that many people never take sparing drugs at all, thinking this is what occurred if it was not possible to follow a consultant prescribed reduction plan. The consultants focus has purely been on getting me down to and being maintained on as low a dose of prednisolone as possible. Thinking about what you've said raises more questions for me, as I have been recommended to increase my steroid dose by more than double for a week, then drop straight back to where I was when the flare started. Thankyou again for sharing with me
A lot of doctors want their patients to reduce as quickly as possible even though the patient’s body may not agree!
As you are called ‘gardening’, I don’t know if you seen the gardening group set up from this group for people with PMR and GCA at facebook.com/groups/6288051...
I agree with what you say about doctors wanting patients to reduce as quickly as possible, that's been said to me many times - if only my body felt the same! not having a body that has been able to follow through with what the medics advise has felt like an added weight on tp of trying to stay feeling as well as possible. I do like gardening and didn't know about the gardening group, thanks for the link to it
When I was working, I only saw prescriptions for AZA to treat Crohns, Rheumatoid arthritis and Ulcerative colitis. If you look on the NHS website there's some easily understood information. I can't advise but if it were me, I would decline because there is little evidence to support it's use in PMR.
Thankyou very much for sharing your insights. As a lay person with no medical insight about medications, apart from experiencing extreme adverse effects of MTX and Leflunomide, as well as repeated flares at lower levels of prednisolone, I am very hesitant about attempting a further possible sparing treatment. I have looked at the NHS information about AZA and feel clearer in my mind that this isn't going to support me or potentially improve my quality of life. I say this accepting the medics view that long term prednisolone is not good for me and that not being able to reduce in the recommended way potentially puts me more at risk. Again, thankyou for sharing with me
I know it must be so disappointing after 6 years to have yet another flare. I have been on pred for 10 years. In the past I have taken leflunomide but for sometime I have been using the Dead slow nearly stop way of reducing; only reducing by half mg at a time, often repeating a step once or even twice, sometimes staying at a position in the reduction for a little time, say 3 days at the lower dose then normal dose 1 day and staying at the new dose until I feel really stable ( sometimes for about 4-6 weeks) It’s a very slow process but if it works, it works!! I’m extremely sensitive to reductions and this way I have managed to go down to 4.5 mg at the present time just on pred alone. My consultant, Professor Hughes also had me stay on 5 mg for about 7 months for my adrenals to catch up.
So in summary my advice would be to try a slow, slow reduction when you feel more stable and try not to be disheartened that it is taking so long. 💐
I am really grateful and thank you for sharing your experience with me. The whole PMR GCA journey has been extremely debilitating, both physically and emotionally for me. Being in a flare again and seeing the hospital consultant once more has however brought to light the fact that my CRP level has been slightly elevated since 2022 and never been within the normal range since then. All this while I have felt in pain, exhausted and that something was not right. Throughout this time though I have also continued to be encouraged to maintain my current dosage level of 6 mg . Whenever I have queried this at appointments with the consultant or GP no explanation has been offered me regarding my pain, exhaustion and stiffness levels. I feel my treatment plan to date has been focused on getting me to as close to 5 - 6 mg level of prednisolone as possible, as I have been told this is the only position for me to achieve any improvement in my overall health. What you say about how you are extremely sensitive to reductions in prednisolone and that you have a very, very slow approach to reducing prednisolone to half an mg at a time has been a eureka moment for me. I am also now very interested to learn more, if possible, about the consultant Professor Hughes, whether he accepts private patients, where he works from and how I might contact his secretary as I am seriously considering seeking a second opinion. Once again, many thanks for sharing your journey with me .
You could try reducing by 1/4mg at a time. All you need is a pill cutter (available from chemists for around £3-4) and cut the 1mg tablet into 4 pieces. It doesn't matter if one piece is smaller than the others, as you will make up the difference when you take the larger piece.
Also, I would say that if you're sensitive to reducing, then not only reduce by 1/4mg at a time, but spread the reduction over a much longer time period, say once every 3 months. That way your body has a chance to adjust to the new dose and settle before you try reducing again.
As for Prof Hughes, he's based at Chertsey I believe, so if you're within striking distance of South West London then he's the man to go for.
Many thanks for the advice about taking a slower reduction and using a pill cutter. I have used one of these before but never thought of cutting a 1 mg into four pieces. Also, I've not attempted reducing 1/4 mg over a three month period, I'll take a much slower approach when I'm next ready to start reducing. Thank you too for sharing your recommendation about Professor Hughes. I've decided that after this amount of time and so many setbacks I need to have another view.
Hi gardening. Professor Rod Hughes works in Chertsey , Surrey at St Peter’s Hospital, That is quite a distance from me, I live near Worcester in the Midlands. I first of all contacted him 10 years ago and went for a private consultation. After that he put me on his NHS list. I went approximately every 9 months or so to visit him but of late I have been having telephone conversations with him. We also have had contact via emails. If I ever have a problem then he tells me to email him, as long as it is concise, and he always replies. We have laughed over the years that he has said he is my insurance against GP’s wanting to do other things with my dose or question what I am doing. I always state” This is what my consultant wants me to do” end of!! I don’t say “end of!!”
I did once have a particular GP who I didn’t get on with, which to be honest is unusual except that I am quite firm what I will take or not take etc. She disputed Rod Hughes’ diagnosis of a GCA element of my diagnosis and used to ask me “ What are we calling this now?!” Rod Hughes told me to tell her in a nice way that it was the same as we were calling it last year!!
Personally I feel you have been rushed on too early and quickly in order to tick a box. PMR unfortunately doesn’t respond to pressure!!
I do hope you get on ok gardening. Let us know how you get on.
Best wishes💐
Hi Jackoh, thankyou so much for Professor Rod Hughes contact information, it's reassuring to know he was able to offer you an appointment when you are in Worcester. I live in Devon and the message I've consistently received from both DR's and the consultant has been to reduce 1 mg a month whenever I've had a more settled period - which has been very difficult as due to GCA flare up's I've been put back on very high doses of prednisolone in order to manage the GCA symptoms.
Even with following a slow reduction plan flare up's have happened, so learning from yourself and others here that I need to go even slower than I have, has been much appreciated important advice. For the last 15 months I have stayed at 6 mg but not felt well and said so, but no one medically offered me any explanation for this, or said I should increase my dose. I am now having a flare up again. So yes, I think you're completely right, the tick box outcome has driven all the medical advice I've received so far and after all this time I feel I really need to have another opinion and find a more holistic way of living with PMR and GCA. Many thanks and best wishes 🙂
In the early days after my PMR diagnosis I took Azathioprine for six months with little effect on my steroid dose, so after that it was stopped by the Rhematologist. This was about 10 years ago and I don’t think it is a known effective steroid sparing drug for PMR. I didn’t get any side effects but it didn’t help either. Sorry not to be of much help. Prednisolone controls my lingering PMR - now at a low dose and pain free.
I really appreciate what you've shared of your experience with taking Azathioprine. I came out of the consultation on Friday feeling very uncertain about the value of taking another sparing medication and finding out more about the drug since then has made me feel more anxious about the possible potential side effects, when this has already happened to me with other sparing medications. Your experience of Azathioprine having had little effect makes me feel much clearer about the decision I have reached to not agree to taking it. Thank you so much, best wishes.
Just wondering why they have not suggested Tocilizumab?
Believe it or not when I asked about this medication and other types of Biologic treatments that might help I was told it wasn't appropriate for me. No further explanation was offered, it was a very blunt 'no' and I was made to feel I'd really stepped over the line. I have now got to the stage of feeling quite uneasy and overwhelmed whenever I have to go for an appointment. But with the information that's been shared here with me I feel much more able to take further action. Thank you and best wishes
But you have had this since 2019 - I would enquire - it seems to be much better than either of the others.
Thank you , yes. I'm going to make enquiries about getting a further opinion as the next best step I can take👍
I was going to suggest you consult with Rod Hughes and saw that it had been recommended above. He prefers an in person appointment for first time, but has been known to waive this if it is impossible. After that it is telephone consultations which are very convenient. He has seen it all, and though he's not infallible, he is the closest thing we will get. X
Though to add, I think it would be unlikely to access TCZ through Rod. I know Jackoh did but I think that's a rarity because of the cost and being out of area. As you probably know it is only accessible through the NHS. Rod has referred me back to my GP and then to a local consultant to try and access it. X
Following this discussion with interest - I have no experience so nothing to offer but was diagnosed in November 22 and have tapered down to 9mg from 30 - I did get down to 6 but flared a couple of months ago and rheumy suggested I go back up to 10 for a month. I was lucky - I'd got a telephone appointment that month. Just had the post-appointment letter and he's suggesting I try either methotrexate or azathioprine once I get down to 5mg.
It'll be interesting, because by then hopefully I will have moved to a different area and may be under a new rheumy. Mind you, if it doesn't exchange contracts today I think I'll be looking for somewhere new and remarketing (is it any wonder I've been flaring?!)
If you can get down to 5mg on just Pred, don’t see the point in adding in a DMARD at that dose.
Just as a matter of interest how did you reduce from 9mg to 6mg -if too quickly that may have been why you flared…
It was 1/2mg a month once I got down past 10mg. Rheumy wants me to go down 1mg a month but we'll see. This time instead of just dropping I'm doing the 5 week dead slow taper, just started week 3. Pain level ok, bit of shoulder ugh in the mornings but bursitis is a so and so at the moment and if I'm not in bed for 1145 I don't sleep until around 3am (last night). Mind you, it was past midnight the day before but I think sheer exhaustion, having had one drink and having to take co-codamol when I got in meant I slept like the dead!
Sounds as if you did reasonable taper - just bad luck perhaps. But with a slower taper you have more chance to realise things are going a bit wrong -and you have the time to remedy it -so good luck this time around,
What you say about getting down to 6 mg and then have a flare is interesting. I hadn't realized my CRP had been elevated ever since I'd reduced to 6 mg in January 2024, even though I was in pain and said so to the consultant; the message I was given was that some people experience residual pain for some unknown reason and that I wouldn't probably get any lower in terms of prednisolone dosage than 6mg. I'm now experiencing a flare and back at 15mg having never managed to get below 6 mg. It's been a real roller coaster in every way. It seems it was alright for me to live with constant pain, exhaustion and an elevated CRP rather than be told to increase my prednisolone dosage.
I hope your move will go ahead with as little stress as possible and that wherever you move to you'll find the right support for your health journey. Best wishes👍
After a routine appointment in November with my GP I was called in for blood tests in early December - I thought it was a good idea in view of the fact that I had the appointment with the rheumatologist in early January. The December tests came back but I was told I'd need to have another set in 4 weeks so just before the appointment. The first set failed - the blood coagulated before they got to it, so I had to go in again. That time they couldn't find a vein because I was already badly bruised from the first attempt. So back again a third time once the bruising had gone down so they could find my one vein, lol.
My doctor and my rheumatologist are in the same county but are under different medical areas.. I can't think of the proper word (pred brain). Basically I live in Northamptonshire but we're usually referred to Oxfordshire because we're near the county border. However, because the first rheumy who was available was in Northampton I got sent there and because there were other complications most of my treatment is now in Northampton. This means that my doctor can't log on to the Northampton hospital system and vice versa, so blood results have to be emailed to me to pass on.
It was interesting to see that my CRP increased from 6 in December to 17.9 in mid-January. I haven't had a test since.
Makes no sense. 5mg is the point at which people say the steroids are not harmful eg causing major side effects. Why would they want to add problematic meds then?
Hi there gardenning, I’m coming to this a bit late but thought it was worth reinforcing earlier comments about Tocilizumab. I have no idea why your doc would say no, and I think it’s worth raising again, given the incredible success that many on here, including myself have had with it. I managed to get off pred altogether but the inevitable happened when I tried to get off Tocilizumab. PMRpro has managed to get down to 7mgs, I think, after years on higher doses of pred. It is expensive and that might be the reason, but I think, if all other protocols have failed, you are able to get it for 12 months. Worth a try I reckon.
Hi there, I really appreciated what you've shared regarding your comments about Tocilizumab. Learning from everyone's experience has been so helpful and encouraging. I've gone from feeling pretty anxious, despondent and isolated to feeling the are further options I can look into. One of them being that I need a second opinion and a fresh look at how I can go forward. Best wishes😊
Just yesterday I was discussing this with Prof Mackie in Leeds - and there is the option of hydroxychloroquine which has worked well for several. Azathioprine doesn't have much of a track record - but it is a lot more complicated than MTX or LEF being all that works.
You need enough pred - and 6mg is obviously NOT enough. But even with tocilizumab I am still on 7mg pred - some people get off pred with TCZ, half of patients get to a lower dose of pred but some of the inflammation in PMR/GCA is not due to IL-6 which is what TCZ works on - and pred is required for that inflammation.
If you have GCA and it relapses, I can't see why you don't qualify for TCZ. I would challenge it.
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