I have been following this site since diagnosed and have found encouragement and solace through my journey.
After 2 months I was diagnosed with PMR and put on 20mg pred, immediate relief, I could get out of bed and walk, by the end of July I was on 11mg.
Stress then sent my tapering into a spin, my daughter married, fantastic, but doing all the flowers, growing and arranging, hosting guests and going inside a venue after covid restrictions meant no sleep and lots of stress! My GP suggested a move to 15mg for a couple of weeks which really helped, I subsequently reduced to 12 in November when pain in my shoulders and arms increased and sleep was reduced to the extent that my GP suggested a consultant who gave me 15mg at the end of November and the GP on 31 December gave me 20mg. I now feel as I did when first diagnosed.
I then had a telephone conversation with the consultant on 7th January, he said I should be clear of pred within 18mths to 2 years and as I am now where I was 10months ago there was little chance of that so I should go on the steroid sparing drug, Methotrexate, and an appointment would be made with the nurse, he would then see me in 6 weeks. I should make appointments for bloods, X-rays and drop to 17.5mg, so much information fired over the phone I almost feel like taking to my bed with brain ache!
I now feel positively scared to go on a new drug when I am feeling OK. Any reassurance would be appreciated.
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suelm
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“he said I should be clear of pred within 18mths to 2 years “…
The textbook may say that, your PMR may not!
Problem is once you begin to flare more than once it seems more difficult to get things under control.
I would try and stave off MTX for the moment, and say you’d like to try reducing with a slower taper - previous flares were caused by stress over wedding which has now passed. Is your GP likely to back you up on that do you think?
Thank you for your prompt reply. I seem to be able to discuss my treatment quite well with my doctor but coming from a generation who tends to do as they are told by people in authority I am in a bit of a quandary! I will make an appointment with her and see what she suggests. There certainly does not seem to be an overwhelming approval of Methotrexate on this site!
It has its place - but it isn't a nice drug to take and it doesn't work to reduce pred significantly for many patients. For me all it did was enhance and actually cause adverse effects that are usually ascribed to pred! It potentiates the effect of the pred - but it does that for the undesirable side effects as well as the desirable one that is antiinflammatory! PMR is only over in 2 years for about a third of patients - and MTX often only makes maybe 2 or 3mg difference but has added in another layer of potential side effects.
I suspect that now the wedding and xmas etc is out of the way you will manage a lot better - and a good start would be getting atable at 15mg and then reducing 1mg at a time while making adjustments to things that you identify as making the PMR worse. It may be activities, it may be diet - and you may find things that help as well. It is a big balancing act - whatever drugs they try to shove on to you.
Really whether you take Methotrexate or not is up to you in discussion with your doctor. Some people find it OK. I may be one of those people who are none too sure about it, but don’t be too swayed by us.
I have spoken to my doctor who says she is pleased as she hoped the consultant would put me on Methotrexate! She specialises in Rheumatology at my medical practice and says it is very effective and will get me off long term steroid use and the hospital rheumatology nurses will tell me what to do……I will put it off for as long as possible to enjoy the quality of life I have at the moment, she said it would take a few months to settle in! It might be my body but I feel if I don’t do as I am told I will suffer for it emotionally and physically. Thank you all for your advice, I will just try to be positive!
"She specialises in Rheumatology at my medical practice and says it is very effective and will get me off long term steroid use"
It is always worth trying and does work for some people but it is very rare for it to get someone with PMR entirely off pred - it will work better when the diagnosis is wrong and they actually have an inflammatory arthritis with a polymyalgic onset. But she is promising too much - because for many it just gets them a bit lower. PMR is not RA - and it doesn't work for everyone with RA either!!
There is actually about to be a study looking at how effective it is in PMR - to "answer the question once and for all" to quote one rheumy in the research group!
The subject of methotrexate comes up on here often. It helps some people but not all so I don't understand how a GP can be so confident that it will work on PMR. It didn't work for me, in fact the side effects meant I had to come off it. And how do we know if even works? You may be able to reduce the steroids but you should be able to do that in time anyway. There is no evidence (I'm aware of) of trialling it for PMR although I believe Prof Mackie is going to put together a trial that will assess its effectiveness against flares and relapses. Not saying don't do it, just weigh up the pros and cons, it's your decision.
Oh suelm, I do sympathise! I was diagnosed with PMR in March 2021 and with GCA the following June. Like you I’ve had a lot of family stress (one daughter had a bereavement, the other a very difficult pregnancy, etc). I was able to reduce from 40mg in June to 15mg in August without too much difficulty, but since then have really struggled to get to and stick at my current dose of 12.5mg.
My last rheumatologist review was in September, again by phone, when I really felt threatened with methotrexate. To quote the rheumy, who’s never met me and knows nothing about me really, “it seems you’ll be one of those people who flares, so we’ll be putting you on methotrexate”. Not the best start! Now if he’d said “If you flare again, we should discuss whether you’d like to try methotrexate”, I might have felt a bit different!
Anyway I managed to get him to hold off, but now I’m dreading his next call, whenever that may be, as I’ve barely got below the dose I was on when we spoke. My GP, by the way, totally ignores me. I’ve tried econsult and received the briefest of text messages from her, and that’s it.
So I’m sorry, I don’t have any bright ideas, I just wanted to commiserate. Maybe we’ll end up on methotrexate, maybe we won’t…..but in typing this, I’m thinking that whatever happens, I need to stand up for myself more.
Good luck 😊 I will be interested to hear how it goes xx
I sympathise so much, we try to understand the disease, eat well, exercise within limits and end up feeling out of control, how I wish it was like a cold, stiff hot toddy, lots of whisky and all solved! I was never told by my GP she referred me to a consultant as she wanted me on methotrexate, if she had said that my attitude would be different! Maybe a little more tact and bedside manner might help!
This paper has people start at 60, take about 5 months to get to 20, then take 104 weeks following PMR tapering methods. Two years. And of course not everyone can follow this. Four years seems like a fairly common time with GCA.
Is there no acknowledgement from these doctors that GCA is a serious systemic disease, you were only diagnosed about seven months ago, and already you are below 15 mg (although it sounds like you shouldn't be quite as low as 12.5)? If you'd been struggling to reduce to 10 for a couple of years, well, then might be the time to consider alternative or additional treatments.
And no, there doesn’t seem to be any acknowledgement of this. I live in fear of GCA getting worse, and at the same time I’m under pressure to reduce my dose. Actually it’s making me constantly anxious, which isn’t like me….
I do think I ought to consult my GP but the current further complication is that I have a cataract op booked for 24/1 and the company policy is for patients to self isolate for ten days(!) beforehand. So I’ve run out of time for a face to face appointment in the next two or three weeks, even if I could get one 🤦♀️….
Well, there you go. You shouldn't be reducing when facing even the minor surgery of cataract op. There is stress involved with that, plus the pandemic and having to isolate. Any chance you can go back to 15 for the time being, until you are through this imminent hurdle, and then maybe find a way to encourage more reasonable expectations from your pred prescriber?
I know they want us at 10 or less asap because that reduces the potential for side effects, but there's no point not having enough pred to deal with the condition, and forcing the issue may cause you having to take more in the long run.
The trouble is, life is full of stresses, isn’t it? Makes it difficult to find a low stress time to reduce….🤷♀️
I’ve been at 12.5 since mid October so haven’t been trying to push against the grain. Actually I was pretty much okay before Christmas, just very tired, and did get upset when my husband got Covid. He wasn’t really ill with it but we nevertheless had to cancel hosting our family for the holiday period. So I’ve been on 12.5 for about three months now which is why I’m nervous about not even attempting to reduce. However I’m sure you’re right, now is once again not the right time……just have to persuade doc of that, whenever the conversation comes up.
Thanks again x
PS I’d love to go back up to 15, when I felt so much better, just more energetic really, not much to do with pain, but then I’d have to justify it to the powers that be - you can tell, I am sure, that I don’t feel my GP or rheumy are supportive at present. Hopefully I’ll eventually gather the strength to give them the opportunity to prove me wrong 😉
If I recall you had very stressful last few months, and covid situation wouldn’t have helped so give yourself another month on 12.5mg then may try reducing - only 1mg a time and maybe a slow taper -
Hi Suelm, I have been on steroids since 2016 and started MTX October 2021 to 'help' me get off steroids. I am currently only on 10mg MTX and thankfully have had very little side effects, although this might change if/when they increase it, but we will have to wait and see. I have been at around 10mg of steroids most of this journey but they are keen for me to reduce further and I got to the stage that if I didn't try what they were suggesting they were going to wash their hands of me as a neurotic woman so have agreed to at least try.
I had a bump before Christmas and ended up back on 12mg Steroids and Naproxin (which I am currently trying to see if I can stop) so all I seem to have done is add another medication into the mix...
My thought process is that at least I can stop MTX, if I feel that it is not working, quickly and I have been on this journey for over 5 years now so it was worth a try for me. I am not sure I would have wanted to go down this route any earlier but only you know what is right for you. I just wanted to let you know that so far I have been ok on MTX but it is not having any effect on the pain I am in... yet... Not sure if this is helpful but thought I would share... Good luck with your decision.
My experience of MTX is the same. Would love to stop it, but have been told that the steroids must be first to go.🤷♀️ Because MTX hasfewer long-term effects, I suppose!
Hi SuelmI was persuaded to try methotrexate after I had difficulties reducing below 17.5mg steroids. I was very reluctant to add in another drug (particularly another immunosuppressant during covid) but as I wanted to try and reduce further to lesson the side effects and I need an operation on my thyroid which my surgeon does not want to do do until I am under 10mg.
I have been on a 10mg dose mtx and a 5mg folic acid tablet taken the next day since September. So far the only side effect is additional fatigue and I have now reduced my steroid dose to 10mg although I am not completely pain free. Impossible to know whether I would have achieved this without mtx. I have found the routine of regular blood tests and difficulty with communicating with the hospital very frustrating and time consuming but hope that now a shared care protocol has been set up with my GP things will be easier. Although I now have no follow up appointment with a rheumatologist until July!
It is a very difficult decision and I don’t know if I made the right one. Like you I find it difficult to go against medical advice. Best wishes and good luck.
Hi Suelm, I have been taking methotrexate for RA for 17 years, and have not had any problems. I have blood tests for sed rate, CRP, and liver function every three months; results have been perfect. In October I was diagnosed with PMR and was prescribed 10mg of prednisone. Severe bilateral shoulder and arm pain and stiffness was gone within a week. My rheumatologist said my prednisone dose was a bit lower than usual for PMR because I take methotrexate. Now will taper prednisone.
My advice would be to stay away from Methotrexate. It can be the cause of pneumocystic pneumonia and if you read the notes on it this is listed as one of the adverse effects. Trouble is the symptoms of pcp can be the same as the ones listed for being on prednisolone so they get missed. Check out some of the articles on methotrexate they will help you decide hopefully against.
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