Just returned today from chapel allerton

Hi yes my blood markers did show inflammation, and yesterday the doctors who gave me the injections said my inflammation on my right was sky high, today it has been more painful, but they told me that for a few days i could have a flare up.

I will feel better when somebody makes their blood mind up(sorry for swearing) about what i have and what i dont have.

I have just had an appointment at the doctors...my last ESR reading in October last year was 2...which she thought was very good.....(started 4 years ago at 47) I have been very ill at times recently, and mentioned about my sister with RA, when she suggested Methotrexate (my sister was very ill on it)..she said there is a crossover with PMR and RA, and it`s tricky to sometimes get it right!

She did go on to say about patients that have had success with it....I now wonder....is it possibel to have both, and would MTHX help me.....

I am on 10.5mg, and she thinks 4 years is unfortunately a long time compared with most!  How complicated this can all be, when we are`nt "typical"

How can 4 years be a long time cpmpared with most when half of patients need pred for 4 to 6 years and a further quarter for even longer? German textbooks accept 5 years as average. Their PMR isn't any different.

Yes, it is possible to have both, or PMR and another inflammatory arthritis and in that case MTX might/could help. I do know a few people with PMR as their original dx who have done very well on MTX. Using MTX for "pure" PMR won't guarantee a reduction - but it may be worth trying. I've been down to 5mg by using the very slow reduction approach - I wouldn't want to try it, but for patients who are stuck well above 10mg over a long time then it might be worth a go. But with the proviso that it is possible you may have a flare at some point despite the MTX - it does happen. MTX (or other DMARDs) alone WON'T manage PMR, if it is "just" PMR.

The doctor said I would have to come off the steroids and just have MTHX, so if it is "just" PMR, what is likely to happen I wonder.....a major flare, and back up high again??

Why "have" to come off steroids? They use both together - if the MTX works you can reduce the pred. 

Yes, I had read in other posts that both are used together then taper....how confusing.  I have told her I will think about it...

Is there no defining test as to wether someone has PMR or RA...I know there is  the Rheumatoid factor....(my sister is zero negative) so, many of us could have one or the other, and be treated by mistake with wrong meds?  (that`s probably a silly question I know.)...

No - that's more than half the problem! If there were a definite test it would make life a bit simpler. But other than the erosion of the joints with RA there isn't anything definite for either - they just look very similar.

Most doctors would start you on MTX and then reduce the pred slowly as you tolerated the reduction. You can't stop the pred suddenly anyway now - that is just a recipe for disaster as it could cause an adrenal crisis and I wouldn't wish that on my worst enemy. It might not - but you don't know so you reduce SLOWLY. It isn't only the PMR symptoms you want to keep under control - it is a multi-faceted thing.

Some experts feel that you can make some distinction through the response to pred. PMR, as we mean it, should respond dramatically to a moderate dose of pred (15-20mg) within a short time - whereas other forms of inflammatory arthritis usually respond a bit or not at all. That is also why the high doses shouldn't be used for PMR.

Thanks for that Eileen...I did respond dramatically to my original dose of 15mg, 4 years ago, thought it was a wonder drug, and so did my family and friends (bearing in mind I have Fibro as well)....but alas it didn`t last....

I will consider the MTHX but being sensitive to most medication, unless

I really have to take something, (like pred) I don`t really think it`s for me...

Thanks again for the info...

If you are doing reasonably well with pred - since you react so badly to many things and that is common with fibromyalgia why is there the desperation to try you on an unknown? Pred isn't ideal, we know that, but when it works to give someone a reasonable quality of life, why mess about? It isn't as if we will be on it for 30 years! No-one can deny that!

Yes, I agree.  Since reading these posts for the last 3 years, it has often puzzled me (and others no doubt) Rheumies put us on Pred, then bully us to get off!  It seems after 2 years it starts.....may  be this it what they are taught, I don`t know, but what is written, dosen`t always follow in practise does it?..

..You are more familiar with these things Eileen...has it changed over the years, or has it always been like this.  I`m sure different hospitals/rheumies have different approaches, but my friends/family even say to me...they put you on it...why bully you to get off it!

When my rhemy (whom I won`t see again unless forced) ranted about getting off steroids...I said to her, you don`t think much of them do you, she replied, they save lives sometimes, but can harm yours if on too long!...and then went on to tell me to go on MTHX...well they all do "harm" with side affects don`t they I replied....exasperated at this point!

It isn't even just that that I don't get. All the reviews from the top people say pred is the "mainstay of management". The papers on MTX have said maybe/maybe not in terms of working in PMR. The rheumy I saw here originally was adamant - no role for MTX, especially in GCA. It does seem to depend on the rheumy so maybe where they were trained and by whom. But no-one, no-one at all has published work suggesting MTX works in PMR - especially on its own. If it did - shouldn't they be using it the same as they use it in RA as standard. When they will answer that question for me, with good reasoning I'll accept it - but not while half the stuff tells me it isn't proven to work.

The Royal College of Physicians London Guidelines suggest "consider other immunosuppressants after 2 relapses", They say pred for 1-3 years, sometimes low doses for longer - no specific mention of MTX. And they do say that the management has to be adjusted individually for the patient. And THAT is what gets me - there is no personal adjustment by some of these rheumies - "you do as I say or nothing".

 

Exactly, that is how my rheumie is....there is no working with her, as an individual, not like my doctor....so it did surprise me when she suggested MTX, but she dosen`t put the pressure on, or have an attitude, she lets me decide....The last time (I hope) I visited my rheumie, as I have posted before, when I started to ask questions, she said be quiet and listen to me!

  My sister had her also at the beginning, but is so wound up before she sees her, that I have persuaded her to ask for another, which they are doing now, although she was told by her doctor, you can`t choose, it`s whoever can take you...she was just the same with her.....do as I say, don`t question anything! 

How on earth can that help anyone, especially when feeling ill....

One woman, a colleague of my husband at the time, examined me somewhat briefly and informed me it was OA "I can feel it". No-one else has suggested it. A year later she was quite nasty to me "What are you doing here? I discharged you." Apparently not properly ma'am - because I merely kept the appointment your department sent me.

Heaven knows how she treated non-colleagues!

Yes, unfortunately these people are in all walks of life...but at first I gave my rheumie the excuse that maybe she was having a stressful day...but she was never any different, I know the hospitals are under a lot of stress, but we are ill people just asking for help, and feeling vunerable.

Their attitude to patients can be shocking....as our papers sometimes show us.

My brother-in-law has had wonderful treatment in the last 12 months for a heart condition, (At 54 nearly died) and cannot fault them.  So we have to have hope these  people are not the norm I suppose. I feel sorry for those people who cannot perhaps change to another rheumie/doctor.

Did your husband think she was like that with all patients I wonder, or was she having a bad day!....

He got on with OK - but wasn't there when she was with patients so how can you say? The worst bit the second time was she had a student with her - teaching by example? 

I also saw a musculoskeletal specialist at one point - not a doctor, a physiotherapist with an extra bit of paper. HE had the cheek to tell me that because I could bend forward and touch my toes I couldn't have a back problem! I always have been able to do that except when my upper back wouldn't bend because of tight muscles - but Pilates helped sort that out. 

Without the NHS I'd have no husband, no older daughter and no grandaughter - but at present I'm very apprehensive of where it is going. It is very frightening.

Absolutely it is...and as for the 111 service, don`t think I would bother, if I was worried about anyone, it would be A&E! and hope we get a "nice " person....

My older daughter used to work in a Scottish NHS Direct call centre, in the days when it was a majority of qualified healthcare professionals there. Even then the English version was called NHS REdirect!

Combine 111 and a script with Hunt's advice to "google your symptoms" - one way of killing the punters off I suppose...