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Can PMR get better on some joints, but progress to others

Posted , 5 users are following.

terry77781
terry77781

I have been diagnosed with PMR 9 months ago.  Pain came on rapidly over a weeks time, and started primarily in hips and somewhat in shoulders.  Went to GP and did a prednisone taper starting with 50mg and tapering to 10mg.  Felt better within a day and pain gone in 2 days.  But once done with taper, pains came back within 4 days.  Over the next 8 months I have been on prednisone constantly, as high as 15mg and docs keep wanting me to reduce to 5mg.  I never get there and pain gets bad and have to go up to either 15mg (no pain) or 10mg with some ibprofen to supplement.  Pain in hips has gotten progressively better but shoulders got worse where it was hard to put on shirt or coat and hard to raise arm above shoulder level.  That was 3 months ago.  Now am seeing a Rhumatologist and he now has me on Methotrexate in addition to prednisone.  He did that with the intent on the metho to be able to reduce prednisone to 5mg or less.  Pain in hips and shoulders is nearly gone now at 7mg prednisone and 20mg metho.  But now have pain in both hands in the fingers with pain and swelling especially in morning.  It was OK at 10mg prednisone but not at 7 or 8.  So because of the pain and swelling in the fingers the Rhuemy now says I have RA, and that is why he is doing the metho.  Try 20 and up to 25 if necessary.

My question to all you experienced PMR patients, does all this sound reasonable?  Does pain in fingers rule out PMR now and is RA the correct diagnosis?  My main reason for asking is that it seems to me that the PMR has simply started in some joints, been cured or nearly so in those joints but is making the circuit and traveling to others.  Can PMR affect fingers in later stages.  My ESR and CRP was elevated in early stages but now seems to be in norm at last check 3 months ago.

I appreciate your reponses.  I am a 67 year old male living in USA

2 likes, 13 replies

13 Replies

  • cat_lady_66
    cat_lady_66 terry77781

    Posted

    Hi Terry I too have PMR and Psoriatic Arthritis and take Prednisalone and Methertrexte and have done for a very long time, the Rhuematologist tells me that you can't have both BUT I do, so I am pleased to meet you ...........fingers sound like RA as I have the same trouble and have had some injections In my fingers and that seems to have worked.......this is just a quick note....... Hope to keep in touch     good luck
  • EileenH
    EileenH terry77781

    Posted

    Hi Terry!

    When I saw the title of your post on my email my immediate thought was: this is probably not PMR but late onset RA. It is not unusual for a patient to first be diagnosed as having PMR but then to have the diagnosis revised to LORA - the figure is as high as 1 in 5. I have friends with RA where it started by wandering from one set of joints to another, at one time painful feet, at another a sore knee, then the hands were affected.

    When my PMR started I had wrist and hand pain as well as very sore feet - it felt as if I was walking on sharp pebbles with feet that had been tightly bound up. However, after a few months on 15mg pred this had started to improve and even when I had a major flare a couple of years ago that didn't return. Once the tendonitis/synovitis had improved it stayed that way. The pain was always bilateral - that is one difference from RA where it can be just on one side I believe.

    Your starting dose of 50mg was exceptionally high for PMR, the recommendations for some years have been to use 15-20mg maximum. This is enough to control the pain and stiffness in PMR within a month or so at most, with a big improvement immediately but avoids subjecting the patient to a very high dose of pred and all the attendant side effects. The high doses are kept for patients with GCA where they are needed to avoid loss of sight. Using 50mg will achieve a result in many things - including RA - whereas 15mg doesn't achieve anything much in other arhtritises and is an indication that another diagnosis should be considered.

    It is possible to have both of course and whilst the methotrexate will probably have an effect on the RA symptoms (it is the standard go-to for RA) it doesn't actually do much for PMR. You say you were fine at 15, not at 10mg. Were you reducing directly from 15 to 10mg? If so there is no wonder that you developed pain again - a drop of 5mg opened you up to steroid withdrawal pain which is almost always very similar to the illness for which the pred is being taken. A reduction in the pred dose on PMR should never be more than 10% of the current dose - so not more than 1.5mg if you are on 15mg. Many patients even struggle with that and we have been recommending going down not more than 1mg at a time for some considerable time. More recently we have suggested even that 1mg is spread over a few weeks and that seems to work even better. There are no trials about this - it is anecdotal evidence gathered by a largish number of patients trying it successfully. One consultant inthe north of England is also tryin git - and seems impressed by its success.

    The ESR and the CRP can be elevated in any inflammatory arthritis, if you are on pred they will almost certainly be within normal ranges when you are taking it. In some patients they never rise again even during a flare for some reason. The pred dose will keep them down even if it is slightly too low.

    Had your response to the pred been to 20 or even 30mg I would have said typical PMR with the speed of response. Of course, if you tapered to 10mg and stopped you have ended up yoyoing the dose and that often makes later reductions more difficult - no one knows why, the body seems to become resistant tothe drop in some way. You need to be on pred long term if it is PMR and a usual reduction plan would be 15mg for 6 weeks, 12.5mg for 6 weeks and then 10mg for a year before then reduicing slowly over another year to (hopefully) zero. It would be interesting to see if that helped the PMR-type pain better - you won't get to 5mg if you try to reduce in big chunks. If you were able to go back to 15mg and then reduce 1mg at a time at most, 1/2mg would be even better, you might manage to get much lower - but your GP seems fixated on his 5mg target. I am at 5mg for the first time in 5 years - I always got stuck at 9mg until I started my "dead slow and nearly stop" reduction plan. 

    Hope this helps.

    • terry77781
      terry77781 EileenH

      Posted

      Thanks Eileen.  That was very helpful.  I was so very sure it was PMR as everything fit exactly as internet post say.  Started quickly, bilateral, hips and shoulders, elevated ESR and CRP, rapid response to prednisone.  But the pain moving primarily to fingers now has got me wondering.  I do believe you're right on the prednisone levels.  I have been everywhere across the board from the initial 50 to 0 to 5 to 10 to 15 back to 10 and 7, back to 15 to 10 to 6 to 10 and now at 7.  Both GP and Rhumy are hung up on trying to get me to 5.  Rhumy thinks it's now LORA, but I still don't understand how for 7 months it fit PMR exactly, and now it's RA?  Thinking about another Rhumy specialist, but how to find a good one???  I have a referal to the Mayo Clinic, but they are booked way out until October.  They are suppose to call and make an appt around that time.  So hard to know what is helping or not helping when we keep changing everything.

      Also now getting some hand and foot cramping.  Didn't have this until after I started on Metho, but Rhumy says it's from the prednisone.  Taking Magnesium and eating bananas to help.

    • EileenH
      EileenH terry77781

      Posted

      As I say, it isn't uncommon for patients to be dx'd with PMR first and to have it revised later to LORA as has happened with you. No one knows what happens: is it a mistaken dx, does the PMR morph somehow into LORA, is it actually both? Whatever, the trick is to find a rheumy or GP who is happy (and maybe confident enough) to treat symptomatically. I might be wrong, but I don't think LORA exhibits the same joint destruction that is found with RA in younger patients. 

      I think your rheumy sounds OK - except for this fixation with 5mg. I will be so interested to hear what the Mayo says - their info online sounds good - are they as good in practice when push comes to shove? Are they able to think out of the box? Do please keep in touch and tell us.

      If you have questions do ask, we'll do our best to provide an answer/advise/sympathise. If it were me I'd try to persuade them to be a bit more patient with the pred. But they are terrified of it - understandably to be fair but what I have seen in the last 5 years suggests to me that not forcing reductions and careful use of pred gets better results in PMR than all the other fancy approaches I see all over the place. A very slow reduction after starting with 15, possibly 20mg, pred can achieve miracles with patience. No one has any though.

    • terry77781
      terry77781 EileenH

      Posted

      Thanks again Eileen.  I think after considering your info, I am just going to delay my next visit to the rheumy, and stay at 7 for a while.  At 7 I have morning finger pain, better by noon but still there, gone by 4:00.  The pain and stiffness is there, but manageable.  And only pain is in the fingers, so just stay the course for now.  Rheumy wouldn't be happy with that, so I just won't see him for a while.

      What I know of the Mayo, is that it is great.  Don't know anything about their Rheumatology though.  They hire only the best though, and research is a big part of the clinic.  They are said to be "cutting edge".  But I have also heard that is a criticism of them that they only want difficult cases that expand their knowledge.  Anyway, I don't have to worry about that for awhile.

      In the meantime, I may look for a different Rheumy and see what they say.  Tried that yesterday, but had the date wrong and was there a day early.  (lol  lol).  It was a ways to drive, and didn't seem impressed wtih what I saw, so I just cancelled.  Will look further

  • jean39702
    jean39702 terry77781

    Posted

    Hi Terry:

    Eileen and other will continue to give the most knowledgeable advice.  However, I thought I should share my experiences with PMR with you.

    I was diagnosed in March with PMR and like you, I was started at too high a dose of predisone for 'simple' PMR.  I live in the Northwest Territories in Canada and I have now realized, through monitoring this and other forums, that Canada is WAY behind in PMR knowledge, treatment, and research.

    I was initially prescribed 40 mg for 2 weeks.  From a total melt down of shoulders, arms, and legs I had amazing relief in 12 hours.  I was then advised by a Specialist, through my Nurse Practitioner, to start reducing by 5 mg every 2 weeks.  Unfortunately, I didn't know what I know now and followed that advice.  It ended with an almost full relapse of symptoms at 25 mg.  So, on the advice of the Specialist I went back to 40 mg.  I did not have a return to the euphoria of the first time, but things did stabilze in couple of weeks. I stayed at 40 mg for a month, which was probably longer than necessary.  

    At that point everything I had learned from Eileen and others had finally sunk in.  I am now on a very slow tapering regime that has been successful so far.  There have been a few bumps along the way such as: trying to decide what are PMR symptoms; versus withdrawl symptoms; versus steroid side effects.   However,advice on the forum continues to smooth out the ride. ( FYI, I have many side effects that I've come to recognize and accept.) 

    Over the few months I've shared what I've learned with my Nurse Practitioner, including copies of relevant research available on forums.  Fortunately, he is a medical practitioner that listens. We are manageing my treatment together. 

    I should also mention that in the the early stages, I was concerned that other diseases like LORA, CGA, or thyroid issues might be confusing things, but with the understanding of my NP and further investigations we're as confident that we can be at this point, that everything but PMR has been ruled out.

    So, it's going to take a very long, long time for me to reach 10 mg at the pace I'm planning.  I will be so happy to get there!  And stay there for a year if that's what's recommeded by current research, and more importantly the trying and tested experience of others.

    I wish you the best of luck is sorting through all the issues.  Hope sharing my experience adds food for thought.

    Jean

    • terry77781
      terry77781 jean39702

      Posted

      Thanks Jean (same as my wife's first name...lol).  It's good to see you have figured out what it is (half the battle), and a treatment plan that works for you.  My only dilemma now is what is controlling things for me.  The prednisone, the methotrexate, both in conjunction, of are things just subsiding some.  I hate to see so many with worse problems than my own, but it's good to know that others are seeing similar things and I'm not out here on my own.
  • Light
    Light terry77781

    Posted

    Hi Terry.

    I haven't been able to read all the posts here due to my eyes (keratitis – an RA symptom), so forgive me if I've missed something, but I just wanted to correct one thing...

    As Eileen is the authority on most things here, I thought it wise to put this thing straight.

    Assuming I haven't misunderstood, she said about PMR....

    "The pain was always bilateral - that is one difference from RA where it can be just on one side I believe."

    Actually not so. Bilateral pain is one of the main ways to distingish between rheumatoid arthritis (RA) and osteoarthritis (OA), which can be one-side only. (The other is the direction of pain progress throughout the day. RA starts bad gets better. OA the other way round).

    I didn't know that PMR distinguishes itself by being bilateral as well, but that was my own experience also.

    I seem to be one of the few who started off with RA (8 years ago) and had a nasty onset of PMR much later, fairly recently. I totally recognise the pebbly feet symptom Eileen mentions, which I had not had with RA.

    In fact, my case puzzled my rheumy who sent me to a neurolgist for confirmation.

    I am now following Eileen's ultra-slow prednisolone reduction schedule (against my rheumy's advice) and... so far so good!

    All the best...

     

    • EileenH
      EileenH Light

      Posted

      Thanks Light - yes, PMR is typically bilateral except in the early stages sometimes one shoulder will start to show bursitis before the other for example. I'm sure I remember my friend saying she'd have pain in one knee or foot but I could easily be mistaken.

      Interested you too had the pebbly feet - we find a lot of doctors who try to tell us you don't get PMR symptoms in feet and hands. No, not much!!!!!

    • terry77781
      terry77781 Light

      Posted

      Thanks Light.  All my pains have been bilateral.  It has moved around, but always on both sides.
  • terry77781
    terry77781

    Posted

    I have a question.  I find that if I take ibuprofen in addition to prednisone, that pains are better.  I think by doing this I can reduce my prednisone amount.  I know both can lead to stomache problems, and doing both can make that worse, but I have had no problems so far (9 months into this).   So what do you all think.  Keep predinisone at higher level and take little or no ibuprofen, or go to lower level of prednisone and take some ibuprofen?  The amount of ibuprofen would be perhaps 200mg at night and 400 mg in morning.  I would not take at same time as prednisone, making sure I keep them at least an hour or two apart?

    Of course compounding this decision is that the doc has me also on methotrexate (20mg), and both metho and ibuprofen can cause liver problems.  First test of liver shows no problems.

    My other question for any taking methotrexate, do you feel you can take alcohol in moderation?  A lot of internet stuff says no more than 2 drinks a month.  I like a glass of wine with my evening meal.  My rheumy said that was OK.  Hate to give up the wine.  What do you think?

    • EileenH
      EileenH terry77781

      Posted

      I really wouldn't risk taking pred plus ibuprofen together on a regular basis. One lady with PMR was told to take ibuprofen for the pain (he didn't recognise PMR) and after just a couple of days she ended up in A&E with a gastric bleed - that was without pred. It is unusual, to be fair, but it is a risk to take it regularly. Like most people I use it for the odd thing and have been OK but not more. 

      Pred has side effects but so does ibuprofen - each on their own. As soon as you mix two drugs you are looking at interactions anyway and adding in a third increases that risk. If you are taking some pred anyway then the small amount you would save isn't going to make a massive difference to the pred side-effects longterm but the brufen is adding in another unknown.

      I know the info about methotrexate varies in terms of having a drink. If your rheumy says it's OK he's probably had a fair bit of experience - methotrexate is the standard first line go-to for RA so he will have had loads of patients on it. One small glass with food isn't a lot - and you are being monitored regularly anyway. They'll tell you if it looks to be a problem.

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