being treated for pmr, but unconfirmed diagnosis

Sorry, my phone is playing up on me again....

as I was, saying, rheumi put me on 5 mgs, probably to just wean me of of the pred completely. In the mean time I was reading all the posts on here, asking Eileen questions, and reading the PMR survival guide and other publications and decided that I did in fact have PMR and started on 15mg. but at 15mgs I was still experiencing malaise so I decided to try with 20mgs.and now I finally feel that I can start tapering. Its not easy to diferenciate between over -doing -it symptoms from the actual PMR symptoms that should be controlled by the pred. Also my expectations were way off. I thought I would be back to normal with the right dose of prednisone. Now I realize that PMR is a serious condition that will be with me for a few years and the pred will make life livable while I have it but it's not going to magically make my symptom disappear.

" If so, you most likely have pmr since its the only drug of choice that works"

Not quite as simple as that unfortunately mm - only pred works for PMR, but that doesn't mean that only PMR is relieved by pred. It also works in other forms of arthritis, especially when used at the sort of high dose cheryl's doctor started her on. The response to a moderate dose of pred (up to20mg) has been taken as diagnostic in the past but it has always been disputed by some and there are second thoughts about how reliable it is.

I understand..its a sort of elimination process ..since PMR can present without any markers, once LORA and other conditions that do have clear markers are ruled out, the only thing left is PMR, especially when it presents with the typical symptoms. It sure is a confusing disease.. With so many variables... A full time job!

What is LORA 

 

Late Onset Rheumatoid Arthritis, also known in the US as EORA, Elderly Onset Rheumatoid Arthritis. It just means as opposed to the usual age of onset which is much younger.

The trouble is, not even LORA has clear markers - until they start to see damage to joints. Rheumatoid factor is even not clear: you can have sero-negative RA and have a positive RF and be perfectly healthy - although if you have a high RF and no symptoms it is probably as case of it will develop sooner or later. It isn't uncommon for someone to have their diagnosis revised from PMR to LORA (or something else) later. I think the patients who respond well when methotrexate is added to the pred have something else - but it is very difficult to decide who might do so.

I see...so both RA and PMR can have no markers and have similar symptoms that improve on steroids. I was just surprised that Cheryl was prescribed 40mgs right off the bat without any tests while I had both elevated CRP and ESR and yet the Dr. was so quick to determine I didn't have PMR. With all the literature there is out there, (and I understand that Medicine is not an exact science), I just can't believe that there is such a disparity of ideas on how to diagnose and treat PMR- it confuses and stresses the patient which further aggravates the symptoms.

Yup...

You haven't seen anything yet mimi! It drives me nuts! There are a lot of good and sensible doctors who DO think about their response - but they are at least equaled by the ones who don't listen to their patients, are too arrogant to think they might need to check a few facts and just rush in where angels fear to tread! In both directions - there are as many sure it isn't PMR as those who are sure it is who are very probably wrong. 

You are quite right to be surprised cheryl was put on 40mg of pred for a dx of PMR - that is a GCA dose anyway - without any of the exclusion work-ups being done. So now her rheumy has a clouded picture to work with. It may sound harsh saying a PMR patient should be sent to a rheumy before being given pred when we know that a moderate dose will probably remove a lot of their pain and they may have to wait weeks or even months to be seen. But don't give high doses of pred - and do due diligence first. Blood tests aren't that difficult to get done and the gP doesn't have to interpret them - they just need to have the results. 

Yes, I've mentioned here about the person I met a few weeks ago who also was started at 40 mg - and her doctor whom she loves and trusts, said she had to have the high dose so she would not develop GCA.  She had no signs or symptoms of GCA.  And, unfortunately, like Cheryl, she is having a devil of a time trying to reduce.  When I met her she'd just gone back up to 30, I think, having never got below 25.  This was after six months on pred.  Poor woman.  

I assume he's telling her to reduce 5mg at a time? 

Though on instant reflection - is it really PMR?

That's the thing, isn't it?  I think she was reducing by 5 mg because she told me she was going to try 2.5 instead.  I must give her a call and find out how things are going.

this is almost identical to my story! I was started on 50mg and have, as you know, struggled to get down to a 'reasonable' dose of pred over the past 2 years! I was only able to do it with MXT - which, reading Eileen's post to Mimi....

"I think the patients who respond well when methotrexate is added to the pred have something else - but it is very difficult to decide who might do so."

.....could be part of the issue. I'm now on Actemra - an RA drug, which seems to be making a huge difference - been able to reduce .5mg a WEEK for three weeks in a row with NO side effects. And I feel fabulous.

It's amazing.

 

Really pleased the Actemra is working well for you.  It must be such a relief!  But are you suggesting that perhaps you actually do have RA not PMR, or in addition to PMR?

There's been no reason to believe I have RA so far, but we all know how hard these things are to pin down. If it looks like PMR, smells like PMR and behaves like PMR then it's probably PMR lol

Actemra/tocilizumab is being touted as the thing that perhaps should be used in refractory PMR, and anyway in GCA. The GCA trial is pretty good - good enough it seems for NICE in the UK to reconsider its consultation decision from this summer not to recommend it for GCA.

There are a couple of very small TCZ in PMR pilot studies - that look outstanding (pilots often do!). But it costs a lot more than the pred that far too many doctor think is such a miracle for everybody and you will be back to normal. If only! Does anyone see healthcare systems approving a drug for PMR that costs £10,000 instead maybe £200?

Is it considered a cure, which we know isn't true for anything else used for PMR?

I don't know - don't think they know either as they are in the extended stage of the clinical trial to see how long remission lasts. Which I presume is the nearest they will get to saying it is a cure. You can only say it is a cure if a lot of people die before having another episode - if you see what I mean.

I believe that my rhuemy is using Actemra because of the good results in the trials. I'm also on a trial until September 2017 - so it's currently free - there's no way I would want to pay for it.

That said, only three weeks in and I feel fabulous, dropping 1/2mg pred weekly with no side effects (as yet). I'm hoping to get off MXT at my next visit to the Rhuemy.

Do hope it continues - has he said anything about how he is hoping to continue or is he just feeling his way through it?

My guess is he's winging it! lol  He's a lovely guy, clearly knows his stuff and is actually interested in me and PMR - unlike what I read on here about other rheumies.

Ask him if he is going to write you up as a case study of TCZ in difficult PMR 

I already have..... he smiled and avoided the question. lol