Is it prednisone tapering, PMR, or RA?

Posted , 12 users are following.

Diagnosed with PMR Nov. 2014, and put on 20 mg. of prednisone daily; 8 tablets - 2.5 mg. (20 mg. total) of methotrexate 1 x weekly; 1 mg. of Folic Acid - 1 x daily; and Actonel - 150 mg. - 1 x monthly. Did well, felt good, little discomfort, and then started the tapering of Prednisone and down to 10 mg. I tapered to fast, had a bad flare last March, and back to 15 mg. and felt good again. Then back to a very slow tapering. This past Nov. 2015, my rheumatologist said that I had moved into RA, and added Pacquenil - 200 mg. - 2 x daily and to continue tapering  the prednisone with the hope I can get off it. Now I have occasional stiffness especially in the shoulders, and legs and thighs. 

I have finally worked my tapering of the Prednisone to 7.50 mg daily and working on trying to get to 6.25 mg.daily.  The stiffness in shoulders, arms, thighs, and legs keeps getting worse as I take less Prednisone. Just wondering if anyone has experienced this as they tapered Prednisone, or if it's the RA or PM? Also can you have RA and PMR both at the same time? My rheumatologist says that I have moved from PMR to RA, but my major complaints are the stiffness in the shoulders when raising my arms, and stiffness in my thighs, and legs which are PMR symptoms. Thanks for your help!!!

1 like, 13 replies

13 Replies

  • Posted

    The pain sounds more PMR than RA. If you are having that much trouble you should not be reducing at the moment. You need to get the inflammation under control first. Go back to where you felt OK, stay on that for a while until you feel ready to reduce slowly again. The pain should not get worse as you reduce long term although you may have niggles initially. 
  • Posted

    I'm no expert but if after the flare when you increased you felt better and it's started to drift back as you decrease I would think it was PMR?

     

  • Posted

    Hello Connie, oh how awful. Yes you can have pmr and RA at the same time or late onset RA. But I agree with the others in that I think your symptoms are pmr symptoms and the reason why they are getting worse as you are decreasing your pred dose is simply because by reducing regardless of pain you are not taking enough pred to keep all the pmr inflamation under control.

    instead of continuing to taper, because the rheumy says so I'd be inclined to up the preds to the last dose which you felt your most comfortable at.

    MTX is used for RA and pred for pmr. Your reducing of pred would make no difference if what you had was RA although I appreciate pred is used for RA flares. So, the return of pain is telling me your current pain and stiffness is pmr.

    i assume that when your rheumy says that pmr has moved to RA what she actually means is she has reconsidered her original diagnosis because I was not aware that pmr can turn into RA.

    what is your GP like? If you get on well with them I would be tempted to pay them a visit, least of all because you are anxious about this returning pain which must be dreadful and if it's simply a case of deciding one way or the other what you have wrong with you and therefore what medication should be used to treat what, if pmr is one of the conditions you have upping your preds then reducing very slowly hopefully you'll get there in the end. All the best, tina

  • Posted

    Yes to pretty much everything said so far so I won't repeat it.

    About 1 in 6 patients originally given a PMR diagnosis has it revised to something else at a later date. More often than not it is LORA (late onset RA) but it isn't clear whether the original diagnosis wasn't right (the LORA presented with PMR symptoms) or whether it can morph from one to the other. PMR is, however you want to look at it, not the disease, it is the symptoms of the disease. However, you can have both at the same time and that probably accounts for a lot of people for whom a DMARD helps (methotrexate or azathioprine) or who still have the stiffness and muscle pain when the pred is reduced too far. 

    If you need a bit more pred to keep you reasonably pain-free and mobile - you need a bit more pred. I think you need to identify that dose - it sounds like about 7.5 or 8mg. That is what is called a physiological dose, about what your body would make in the form of cortisol anyway and most doctors don't panic about patients being there longer term. Then you need to stay there for a while at least and let the other stuff work - most DMARDs take a few months at least to have an effect and they don't all work for everybody. It is silly to change things all at the same time, you don't know what is working and what isn't.

    Once you are stable you could try a tiny reduction - use the "Dead slow and nearly stop" approach to do 1/2mg less if you can get 1mg tablets. To be at 7.5mg after only 15 or 16 months is pretty good. Kirwan and his group, UK rheumatologists who have written about this (in the links post as Bristol paper) would have you at 10mg now, just about considering going to 9mg. So 8mg is fine.

    https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

    (Dead slow approach is in the replies)

  • Posted

    Thank you for your help and replies.  I am using your "Dead Slow" approach on the prednison tapering.  It has gone really well until this point. That's how I've gotten to 7.50 mg daily, and I'm now working on getting to the 6.25 mg. daily.  I'm guessing it's taking awhile for my own adrenal gland to kick back in and I'm hoping it will. I've been on prednisone since Nov. 2014 when all of this started.

    I'm one of those lucky people who are cutting up these tiny 5 mg. tablets into fourths which isn't an exact science either. I do use a pill cutter. So I'm sure some days I get a tad more and some days a tad less of prednisone.  I am finding that the days of 7.50 dosage I feel really good, more energy and less stiffness and aches.  The 6.25 days are much tougher, I drag especially in the mornings,  and I'm hoping my body will quickly get used to the lesser dosage.

    I really appreciate this forum and it's help.  I've learned so much from everyone here. Thanks!!

    • Posted

      I think Connie is in the US and I have just checked prices there. One tablet of prednisone costs about the same whether it is 5mg or 1mg - so for a dose of 4mg you pay four times as much as one of 5mg. For anyone having to pay for their medication that represents a large price hike. In the UK i tis pretty much immaterial - free for over 60s or a pre-pay prescription subscription for younger patients and it makes no difference in your pocket. 
    • Posted

      Hi Eileen,

      In New Zealand we pay $5 per item for prescription drugs until a certain number then free until 31st January the following year.

  • Posted

    Sure you can get pred here in U.S. in 1 mg doses, as well as Rayos in 1 mg dosage.  Connie is right about that struggle of just .5 mg making a difference.  I'm stuck at 8mg using Eileen's dead slow reduction but whenever I drop below 8 to 7.5 it is a struggle.  I'm still working at it as I detest this weight gain, bloat and swelling in legs and feet after standing teaching all day.  So hard but I shall stay at 8 to be able to keep working. Have gained 10 pounds and seem to have stayed hovering at that new weight, ugh.  At least I'm not getting heavier. Good luck with the reduction Connie.  I'm right there with you!
    • Posted

      That must be so difficult standing teaching all day. I know how my legs feel after standing for a short time. I find I have to move and I am retired and still find that my legs are swollen by evening though not greatly and it is improving since I started reducing the steroids. I guess because your body has the stress of working it must need that amount of steroid. Best wishes for the reduction when your body can cope with it and work.
  • Posted

    Well I'm going to stick with the 7.50 mg of Prednisone daily for awhile and see if the stiffness and fatigue improve.  Also on Monday (2/15) I had a Cardiac CT Calcium Score done as my cardiologists request.  He's concerned with all the meds I'm now on and the RA diagnosis.  I've had a pacemaker since March 2006 with no problems due to "Heart Block" and have never slowed down until the PMR struck in 2014. My calcium score was high for my age group so now I have to have a stress test next Tuesday. Bummmer! Hoping that the results of the stress test will be OK, and I am pleased that  the cardiologist is staying on top of things.  Seems that if one thing starts going haywire healthwise, its starts an avalanche of new problems, plus all the side effects from the drugs.

    All of you are so helpful and I've learned so much from this group!!  Thanks!!

    • Posted

      All the best.  Do let us know how you get on!  <3>

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