Is it prednisone tapering, PMR, or RA?

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. 

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?

 

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

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)

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!!

Hi,  Can't you get pred. in 1mg tablets.

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!

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!!