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

30 Replies

Next
  • Posted

    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.

    • Posted

      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. 

    • Posted

      I am late 40s . But if my symptons are stable. Still have stiffness and soreness usually evenings. Mornings i am okay. So not sure what to do then
  • Posted

    Let me add that he is putting you in all kinds of drugs well in advance of really understanding your diagnosis. The only drug that we know works for PMR is prednisones. To start on methotrexate this early comes as a surprise. And if your doctor is already anticipating another drug protocol a year from now… Well, I would find a new doctor.
    • Posted

      Many doctors in other parts of the world use methotrexate from the start alongside pred. Every country has their own approach but the overall evidence is that it makes not a lot of difference. But what this doctor is doing is perfectly usual practice in suspected RA - and in RA you would often expect your patient might be on a different protocol in a year from now. 
    • Posted

      So in your opinion Eileen you think i should continue current treatment. To reduce 1mg per month is okay? I suppose the methotrexate is used as a sparing agent until he wants to commence new drug. I am so confused
    • Posted

      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.

  • Posted

    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

  • Posted

    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.

  • Posted

    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!

    • Posted

      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

  • Posted

    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.

     

    • Posted

      Well Eileen when i started this journey yes the steroids relieved the pain and discomfort i was feeling but still suffered stiffness mainly in my arms and legs. Not really anywhere else.i am in my late 40s and from the word go my gp convinced of PMR but the rheummy no. It was only after 6 months he commenced methotrexate on 5 mg and as he reduced the steroids upped the dose to 25mg. methotrexate. and what u said previous about the process to commence the other drug is exactly what he is doing. In all honesty I believe I have PMR he is not convinced and headed more.towards RA. Why I dont know. Purely as my.symptons have improved but the levels havent even on high doses.of the steroids the inflammatory markers still high. Every test I have had to rule out all sorts of.things. some.tests quite invasive i might had but necessary. There is nothing else he can pin point that it could be. So i am. confused and going with the flow....

    • Posted

      There are one or two people who have not had their high ESR/CRP levels fall - and their doctors are mystified too. But I think they have stuck with PMR as a dx. Oh for a definitive test!
    • Posted

      Thanks for your input. Your always so knowledgeable and supportive. It is frustrating to say the least when the Dr are more concerned that such conditions are age related rather than what the patient is feeling. I can understand why after nearly 10 months he still wont put a proper label on my condition or in otherwords wont commit. But for a patient going through what we do it can have some significant disappointments. My main concern with all this is the merry go round you go on and wonder will i ever get off...not to mention the depression part of weight gain. Not even recognising myself in the mirror any more. I have 3 teenage daughters and putting them through hell as i am not the mother i used to be. I know it could have been a worse diagnosis but sometimes I would.predwr to know exactly what the condition is I have and treat it accordingly. Like this ledt in limbo isnt good. Anyhow. I am continuing to take 7 mg steroids reducing 1.mg a month. The methotrexate 25mg once a week and folic acid next day 3 tablets at a time until the march 2017 he can commence me on the biological stuff.....will keep you posted...thanks once again....

      Mirella

    • Posted

      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 redface  wink - must do better!

    • Posted

      I have gained 10kg. I am on a diet so I dont have any red meat no carbs sugar or dairy i only eat greens fish chicken eggs thats about it. I only drink water i dont drink any alcohol and yet not 1gram has come off. I walk in my line of work and i go light swimming 3 times a week. I can not do half of the exercises i used to do any more but the weight just wont come down. The biggest problem for me is the swollen legs its a fluid retention. Thats why i stared a strict diet to begin with but hasnt reallt helped. I am on my feet most of the time due to work commitments. But even then i struggle at work and cut back on extra work like overtime as i am a shift worker. Sleepi g ia difficult...not aure how else to loose the weight...
    • Posted

      Oh, that is rotten! It sounds as if it might be the fluid retention that is accounting for a lot of that though. I tried manual lymph drainage when I had real problems with swollen feet and legs - and that did make a big difference.  There are people who do have fluid retention problems with pred - sounds as if you are one of the unlucky ones. 
    • Posted

      Could i ask Eileen who does the drainage and is it an easy process

    • Posted

      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. 

       

    • Posted

      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.

    • Posted

      Thanks Eileen. I live in sydney australia. I will find someone here who can help. Thats exactly what you described that i need. I wish to see my ankles again. I work at sydney international airport for an airline and cinstantly running around from gate to gate. I do wear stockings but in the heat at the moment gets quite uncomfortable. Thanks for the tips let you know once i have it done.

    • Posted

      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

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.