PMR vs. Rheumatoid or something else

[Leilagirl]

Hi to my very smart PMR team here. It’s Been quite a while since I’ve posted as my PMR journey started 18 months ago, and I have tapered from 10 mg at start down to 3 mg. I have moved to a different city in the US and have seen a brand new rheumatologist. He did more bloodwork and I have become positive for rheumatoid with a CCP test slightly above normal. At the start of this journey I also had a positive rheumatoid slightly above normal but PMR pain everywhere else so Dr had labeled me with PMR throughout the last 18 months. When I taper down from 3 to 2 1/2 mg it is like the first day that I became sick ..the symptoms are that severe.. neck.. pelvis. legs.. some shoulder..bad neck pain then headaches from the neck tightness ..CRP last week was 5 .0 sed rate 2. ..The only pain relief I get is with prednisone. Thank God for it. This rheumatologist says it’s strictly rheumatoid .. “you don’t have PMR “ he says. I don’t look like I have rheumatoid I have no crippling disfigurements whatsoever ..I’m not stiff in the morning because I am managed on prednisone. Could this be rheumatoid or PMR ? Both?? He also mentioned methotrexate but then he changed his mind and he going to leave me on prednisone low-dose for now until I need more than 6 mg then he said we would revisit this.He made sure I’m taking plaquenil twice a day as well. As I have been from the beginning.I really didn’t want to take MTX anyway so I’m thankful I can just do low dose Pred for now .. Maybe I can do low dose prednisone forever as I feel like this will never go away ..thank you appreciate Any advice! I’m on 4 mg now Pred as I had to go up . 3 1/2 was not enough.

[PMRpro Ambassador]

I know low dose pred IS used to manage RA - and I believe there is a difference between LORA (late onset) and RA that appears earlier in terms of joint erosion. The difference in using methotrexate is it is a DMARD, disease modifying, unlike pred and prevent the joint erosion. LORA can have a polymyalgic presentation in the early stages. Plaquenil is a DMARD - if you are well on that I'd rather continue with that and pred than switch to an unknown in the form of mtx - but then, it didn't like me and I didn't like it!

[Leilagirl in reply to PMRpro]

Thank you. He did mention to me that it was unusual to be on such a low dose of Pred and 1 plaquenil a day..(he raised me to 2.. for a total of 400 mg daily. )And be managed painwise. My diet and exercise program is fairly strict. Not perfect but I try hard. Does this sound like it could be rheumatoid only With this body pain so bad when I taper. Not particularly joints just deep vascular feeling pain. Aching especially in neck and legs. I’ll sit tight for the next few months and stay on low-dose prednisone and be hopeful that it will burn itself out like everyone else hopes for..

Best and thank you..!

[PMRpro Ambassador in reply to Leilagirl]

Hum - I'd disagree. But I bet I've come across far more PMR patients on low doses than he has!!!

There are lots of people who are on or had been on 1 or 2mg and were fine, even without a so-called steroid-sparer - until they tried to stop it. And that is what it sounds like for you. If 3mg is keeping you pain/symptom-free - take it and rejoice. It is a really low dose

In fact,

medpagetoday.org/rheumatolo...

suggests a lot of patients get to below 5mg/day and do well - taking a median time of 18 months to get to 5mg, no figures for lower.

[Leilagirl in reply to PMRpro]

The study proved interesting for low dose prednisone. Once again.. I feel encouraged staying the course. Best of luck to all that are dealing with this roller coaster of a condition. And..

Thank you so much!

[OutdoorsyGal]

My doctor said that a PMR flare would be exactly like the initial attack. Others disagree, however.

[PMRpro Ambassador in reply to OutdoorsyGal]

I've only heard a handful of people saying a flare was identical to the onset of the disease. Mine certainly aren't - it doesn't arrive all at once when you are on pred, often it is the worst bits or your weakest points that start grumbling first.

[Hidden in reply to OutdoorsyGal]

It's taken me weeks to realise I was flaring. In the end I just tried more pred and felt the generalised aches and malaise were PMR. It would be nice if it was experienced in the same then one could hop on the pred straightaway.

[Leilagirl in reply to OutdoorsyGal]

I’ve had both happen to me.

I tapered down to much even 1 mg over time is to much. If your pain is not managed on the previous dose and I did become enthusiastic to go down because Dr. pressured me then it was like initial attack. However when I taper just a quarter milligram and it’s not enough it’s like a flare and I know to go back up.