PMR and methotrexate
Posted , 8 users are following.
I started my journey March 2017 and it has taken all this time and still not a proper diagnosis. I have had so many scans and tests as to this day my ESR are still 40 and CPR 45. I started on 30mg predisolone now have reduced down to 7mg. I have been onmethaxatrate for 2 months at 25mg. My rheumatologist still believes its RA although my bloods dont show raised ANA.
purely as he believes I am too young for PMR.
My question is why is my blood still showing raised markers. I amfeling better though but have been dieting as put on a lot of weight with steroids and trying to do light exercise often.
My rheumatologist said by March next year he wants to start a new drug called biological something i didnt get the full name.
apprently very expensive here in Australia and have to go through
this method before I can start.
Wanting other opinions please. Also the methaxatrate has caused my liver enzymes to rise and I believe he doesn't want me to be on this long term as the steroids has had major side
affects on me.
I have been reducing now 1mg per month off the steroids and so far so good. Am confused my he believes its RA as clerly symptons are in my muscles and not joints and all the bone scans shown
no joint problems.
0 likes, 30 replies
Daniel1143 mirella60121
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Oh my! I have to admit this all sounds a little crazy. If they put you on 30 mg of met of Prednisone in March, it would be inconceivable for you to be down to 7 mg today. That is a precipitous decline and would have all kinds of negative effects purely related to spiraling off of prednisone.
How old are you? Many docs think we are too young for PMR but that is because they don't understand that there are many folks will get PMR under the age of 60. And if someone is 59 or younger, they simply concluded something else without ever bothering to read current literature which suggests otherwise.
EileenH Daniel1143
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It's perfectly possible to get from 30mg to 7mg pred in 8 months - if the dose you need is less than that you could reduce steadily without any problems of flare because you would always be above the minimum dose you needed. If 30mg didn't manage the symptoms in the first place you could stop in a couple of months or even less perfectly safely - it is only long term use of pred (more than a few months) that means you have to reduce slowly below 10mg to allow the adrenal glands to recover function. Tapers of 20/15/5 at 2 weeks each are commonly used with no problem at all.
Above 10mg the idea of the slow reduction is to avoid the discomfort of steroid withdrawal which, for many people, is a real problem and you do not know what dose is going to be the right one.
mirella60121 Daniel1143
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Daniel1143 mirella60121
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EileenH Daniel1143
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mirella60121 EileenH
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EileenH mirella60121
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I can't see any reason why not - the dagnosis doesn't seem to be clear so it is difficult to say. If you feel reasonably well and can function, then getting rid of the pred is the obvious thing to do first and it appears your rheumy is quite convinced you don't need pred.
But it is your rheumy you need to talk to - ask him to explain clearly what his thoughts are and what he really is aiming for and why.
Daniel1143 mirella60121
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By the way, after I read about the side effects of methotrexate and particularly it's effect on the liver, I stopped it immediately. If you're already showing a reaction in your liver, I might advise the same. I'm not a doctor, But liver issues are a big deal
Anhaga mirella60121
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You did mean March 2016? In that case your reduction has, as the others said, been much too fast. I also agree that if you only started treatment nine months ago unless you had been unable to tolerate pred for some reason there should not yet be any question of putting you on other drugs for PMR, although mtx is used for RA. Now it is possible the drug your doctor is suggesting is tocilizumab which has been approved for use with RA and also is proving effective in treating GCA, which as you know is so closely related to PMR it is considered to be a different manifestation of the same disease. If this is the medication you may have a chance to try, and if you have some sort of drug coverage so you do not have to pay (it costs thousands $$ a year) then you are probably very lucky. Another lady in Australia has been posting on this forum and she had her diagnosis changed to RA after some time on pred for PMR but not doing well. She had to take another drug for a couple of months, which did not work, and because it did not work she is now allowed to try tocilizumab and last report from her is that she feels better than she has for ages, so that's very encouraging, although still early days in the treatment.
Mrs_Hobbles mirella60121
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If you had PMR, being on steroids would have sorted the pain and stiffness within 24 hours and it seems crazy that your doctor had put you on 30mg to start and also very strange why he put you on methaxathrate so soon. and seems youve had no benefits feom the pred. What age are you? Alot ofndoctors think yiu shoukd be ober 60 and probably closer to 79, I am 54 (diiagnosed in April). The biological drug he's putting you on is probably Embrel, it's hugely expensive, in Ireland it costs €1200 per month. It is prescribed for Rumathoid Arthritis and apparently when it works, it works really well but with your symptoms and scans not showing joints issues, it's very strange he's following that line. To be honest I would be getting a second opinion. He's messing you about with medications that have huge side effects and talking about starting you on Embrel also without any backup to his reasoning. There's no harm getting a second opinion, you need to get some proper answers at this stage, you're 8 months in and still no answers! Wishing you all the best in this and hope you get to the bottom of it all soon!
mirella60121 Mrs_Hobbles
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Thanks mrs hobble I may just do.that. it confuses me as to why the PMR has an age limit. By reading these forums I would think that mid.40s is not too young and not sure.why doctors can not believe it can be. However I may get a second opinion . Can't hurt.
Keep u posted
EileenH mirella60121
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EileenH mirella60121
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Sorry but I'm confused by " he believes its RA as clerly symptons are in my muscles and not joints" - PMR predominantly affects muscles and not joints although you can have synovitis and tendonitis, on the other hand, RA affects joints. So which do YOU have problems with? And did pred at 30mg give you a massive improvement in symptoms in a week or less?
However - it sounds more to me as if he believed from the start you have RA and is working through the protocol to allow you to start on a biologic drug - most countries stipulate that, to have the cost of biologics covered you have to start with the usual DMARDs (methotrexate, azathioprine and so on) and fail them for some reason or other such as side effects or they don't work. Only then can they progress to the far more expensive biologics.
PMR and Late Onset RA (and other forms of inflammatory arthritis) can present identically - some will respond a bit to pred but not usually in the way PMR does. But without knowing more about your age and your symptoms it is impossible to express any opinion.
mirella60121 EileenH
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EileenH mirella60121
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mirella60121 EileenH
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Mirella
EileenH mirella60121
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It isn't impossible to lose weight while still taking pred. Several of us on this and another PMR forum have lost weight/avoided putting on weight by drastically cutting carbs. On a lupus forum I chat on there is a thread currently from several ladies, all still on pred, who have all managed to lose weight with Slimming World. One has lost 16lbs in the last 7 weeks!
I still could do with losing more weight but all the pred weight and some of the PMR weight has gone (I put on a fair bit in the 5 years I had PMR without pred because I couldn't exercise properly. Even now, all I do is walk (not even enough of that - must do better!
mirella60121 EileenH
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EileenH mirella60121
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mirella60121 EileenH
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EileenH mirella60121
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It's like a very specific massage - to encourage the flow of fluid in the lymphatic system, they work upwards from your feet towards your heart as part of it. You just lie on the couch while they do it, nothing hard work at all! I couldn't believe the effect - both legs were quite puffy and he started with the worse of the two. It took about 40-45 mins and we agreed I'd get in touch if I wanted/needed more. Within a few days BOTH feet were back to normal - I could see I had ankles again! It was 4 years ago after I had been quite ill. Since then I have lost a fair bit of weight and I have had no problems again since. I do find that as soon as I eat out my feet puff up a bit for 2 or 3 days and then are back to normal. I use no salt at all at home and of course they use a fair bit in restaurants - but I'm always surprised how much difference it makes. I can put on up to 2kg just from that if we are away and eating out a lot! You say you are on your feet a lot - I presume you use support tights?
Here where I live in Italy it was a physiotherapist who suggested and did it. Massage therapists would also do it I imagine. I know that it is offered in the UK for cancer patients, especially after breast cancer surgery because the lymph nodes under the arms are often affected. It seems to finally be accepted in the UK - it's been used in mainland Europe for many years.
I googled manual lymph drainage UK and got several links - including the NHS and Macmillan cancer. mlduk has a page that you can search for the nearest qualified therapist to you - they are not just people who have set up on their own, they are properly trained.
Anhaga mirella60121
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Just quickly, there's a series of excellent videos on the internet demonstrating how to perform lymphatic drainage on oneself. It could be useful once you've been professionally treated to keep yourself in better condition. Google self lymph drainage massage.
mirella60121 EileenH
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mirella60121 Anhaga
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FlipDover_Aust mirella60121
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Hi Mirella, since you're in Sydney I can recommend a rhuemy - he comes to Canberra once a month where I live and consults here. He's VERY good. Google Jayaweera