Is PMR really in RA family?

RA and PMR are both autoimmune diseases..but not the same.  PMR will not cause joint damage.  Regarding being on Plaquenil...my dr suggested this to me also.  The idea is that this drug will help you to reduce the pred.  It doesn't help the pain. I refused to take.  This is my 2nd 'round' of PMR. The first time I was told to take methotrexate.  This med made me so sick and so weak and tired I couldn't get off the couch.  I stopped it after 2 weeks.  I think you will see when reading all the posts that the only thing that truly helps PMR is pred.  Reducing extremely slow is very important!  Eileen has posted the dead slow method.  This seems to work for everyone. 

Hope this info helped!  Feel better

Hi,I had to come off prednisolone in June (long story but in a nutshell bad side effects).Had been diagnosed PMR 12years ago.Sent back to rheumatologist Saw her in August and put on methotrexate.Told it would take about 3mths to have full effect.Dose raised to 25mg /week.Brought my inflammation markers down great so able to reduce pain meds.GI side effects horrendous so had to stop 3weeks ago.Pain returning but go to outpatients next week to be taught how to inject methotrexate.No mention of if I have RA as well but prednisolone can be used for it also

I had RA markers  8 years ago and I was put on Plaquenil.  This helped, and I very rarely had a flare and I do not have joint damage.  

  2oo mg of Plaquenil did not cause side effects and I felt fine........until a year ago, I felt I was hit by a truck.  I was still jogging the evening before when I could not get out of bed the next morning.  Shoulders were hurting, my back ---- I felt awful.  I thought I had the flu but did not have any other symptoms.  The pain was not much reduced with Advil, and I saw my GP.  He diagnosed PMR with little explaination what it really is.

He put me on 20 mg of prednisone, and I felt better within 3 hours.

I had several flares since then because I was to reduce too soon.  This forum gave me guidance.  I am still on 12 mg of prednisone and experience 70 % of pain which I can deal with.

I would not agree to take MTX because of the RA markers.  15 mg of prednsone helps for both PMR and RA flares.

This is my story.  All the best to you, Layne.

 

My own persobal opinion is that the confused person is your rheumatologist! Or they haven't been totally honest with you.

There is no evidence that either plaquenil or sulphasalazine help in PMR at all except sometimes to allow a lower dose of pred to achieve the same result as a higher dose without them, something called steroid sparing. The only justification your rheumy can have for having you on them is that he believes either it is not PMR at all or not just PMR that you have, but some form of inflammatory arthritis. Or he is experimenting to find another answer to PMR besides pred. But he should have told you that in advance and asked your permission - it is requesting something called informed consent which is part and parcel of any official clinical study and is ethically required. No-one would persuade me to try any of the DMARDs alongside pred unless they showed me evidence I had RA or another arthritis that they have been shown to work in. Or clinical studies that showed good evidence of their effect in PMR.

No, PMR is NOT the same as RA. PMR is a vasculitis - or at least, that is the general consensus of opinion amongst the top experts come to in recent years. GCA is indisputably a vasculitis and PMR can be part of the symptomatic of GCA - not always but pretty often. I suspect there are rheumatologists who don't agree but what their grounds for disagreeing are only they can say.

RA affects the joints and in the longer term damages them irreparably. PMR may involve the joints because there can be synovitis (inflammation of the synovium, the lining of the joint)  but there is no structural damage as in RA. The structural damage in RA is due to enzymes which erode the cartilage and bone progressively and can be seen on x-rays and other imaging once it starts. Unfortunately it isn't always present right from the start and that is why some people may be told initially that they have PMR only to be told at a later stage that it isn't that after all but a form of RA, Late or Elderly Onset RA, LORA or EORA. Both can cause similar levels of damage to the joints which is what led in the past to the knarled hands and feet and other joints in RA patients - even to leaving them dependent on wheelchairs and requiring 24 hour care due to the disability. The drugs called DMARDs work to prevent this structural damage - used early enough and aggressively enough the long term damage is minimised. Often they work for a while and then stop working or work for one patient but not for another and the usual procedure is to work your way through the list - starting with methotrexae or plaquenil and finishing with the various so-called biologics in order. 

There have been a few studies looking at methotrexate and other DMARDs in PMR - it doesn't really work in PMR on its own, the only single drug approach to PMR and GCA to date is pred. Because pred is so reliable in GCA it is unethical to try other drugs on their own and run the risk of the patient losing vision but some doctors do try other things along with pred to try to reduce the pred dose. 

I have found a reference to a study reported in 2011 at a meeting in Chicago of some 500 patients, 59% of whom were on corticosteroids (CS) alone, so just under 300. Of the remaining about 200 patients, 48% were on CS + methotrexate, 42% CS + plaquenil and 10% other CS + DMARDs. The rate of relapse was lower in the patients on CS + DMARD (196 compared to 305) with the best results seen in the group on plaquenil. There is no indication of the length of the follow-up and I gather (I may be wrong) it was is called a "retrospective study" where they take a load of patient records and look at the differences in their clinical history. There are problems sometimes with this - the patients aren't randomly assigned to the groups, there is no careful clinical monitoring of specific parameters so that you can compare the results directly. And as I say, there is no indication of the length of time of follow-up - the wording of the conclusion suggests it may not have been very long. I know a few people who were put onto a DMARD in an attempt to reduce the pred dose and initially things looked good. They reduced their pred dose over a period of several months to a year or so. Then various things happened: some had major flares requiring a return to a much higher doses of pred. A few had to stop the DMARD because of unacceptable side effects, in one they were life-threatening. The longer you follow up the more likely you are to see this - a short study doesn't tell you very much.

The conclusion in this study was:

"The clinical spectrum of PMR seems quite typical, but on the other hand we certainly need large trials and longer observational studies to make more clear the therapeutic algorithm of the disease. According to the literature data, our results had shown that antimalarials brought the disease under control in the majority of patients, therefore it could be appropriate to study their early introduction in PMR management."

I can only assume your rheumy is treating you on the basis of this paper or possibly others like it. Maybe he has used the technique successfully before - or perhaps he hasn't. And the conclusion only says "COULD" - no real proof.

Any of these DMARDs have their own side effects. I think it is fine to try these - providing the patient knows what is going on. My own belief is that there should be a period where the patient tries pred alone - some people do fine on just pred and are able to get down to a decent dose anyway. Then the DMARD could be added and see if the patient does better. BUT if there are any adverse effects of the DMARD then that is not doing what you want it to do which is improving all aspects of management of the symptoms. You have to know what side-effects the patient suffers with just pred - some people have none - to know what the other drugs do to you. And many patients are able to reduce pred well when they go about it in the right way - the retrospective study doesn't consider the way in which reductions were gone about.

Nanduff was ill with mtx, you are obviously not well using the 2 DMARDs you are on. I would want to know from your rheumy why you are on 3 different medications - 2 of which have not been shown categorically to improve management of PMR. I could accept being asked to try one extra at a time but polypharmacy (use of multiple medications) comes with its own problems, especially in older patients. One drug on its own may have x, y z as side-effects, another on its own may have f,g,h as side effects - but if you put them together they may not only have those 6 side-effects but others in addition because of interactions. Scientists don't change 2 variables at once - you have no idea which is causing what. Medications are rarely clinically tested in pairs - it isn't until you stick a patient on them that you find out what they do together.

I think you really need to sit down with your rheumy, preferably I would say with a third party present, and discuss exactly what he thinks he is aiming for and asking for some evidence on his part of positive results. It is acceptable I think to maybe have a day a week where you feel rough - as is common with methotrexate - or a couple of weeks getting used to the medication but to be left where you have no life at all because you feel so poorly is not.

That's what I feel about it  - it isn't a "do this/don't do this" recommendation. It's what I would do/say in the same situation.

Based on my personal case - PMR for almost 2 years - I believe that from over a year of taking Methotrexate , it has helped to reduce the activity of my immune system which typically is overactive in PMR conditions - the reason being that the year before I commenced MTX I was having large flares - then after MTX taken at the same time as prednisone, I had less flare and much less intensity of the flare that did occur. I think that these drugs (DMARDs) such as methotrexate ‘dampen’ down the underlying disease process rather than simply treating symptoms.

I think that MTX has definately assisted me in maintaining my taper with less pain, but definitely it does not replace prednisone.

My prednisone taper is actively being reduced and I’m currently at 4mg pred. I think that there is some significant benefit from using a DMARD. My rheumatologist has now recommended that I start a slow MTX reduction following success with future prednisone tapers - that I hope happens !

Dave