? wrong diagnosis

Hi Koukla! Long time no hear - how are you otherwise?

When I saw the (less than helpful) rheumy they were all very keen to find evidence of psoriasis to make a dx of psoriatric arthritis - or any form of arthritis other than PMR despite my responding to pred in literally a few hours. How did your symptoms respond to your first dose of pred? I assume you have admitted something that could have been psoriasis to them - although apparently you can have it without noticeable skin problems and there are 5 different types.

I kept a log of the times and the difference in what I could do/feel after starting the pred and gave it to them and they acted as if I had made it up. :roll: He came up with a selection of things the first visit and sent me off for blood tests and x-rays. At the second visit (after a trial with pred that worked 100%) all these had been negative so he came up with other ideas and wanted to use sulphasalazine (which is useless in PMR) but that meant I had to find a rheumy here in Italy to keep a very close eye on me. The GP said she'd been taught by the rheumys that if the patient responded to pred within hours that was diagnostic enough to say it was PMR rather than anything else and as far as she was concerned that was fine so we worked on that basis and I haven't seen a rheumy since until last week when I went to the hospital here as I have some symptoms that could be GCA :cry: I see him on Wednesday again to see what I should do. He certainly doesn't regard up to 10mg as exceptionally high on a horses for courses attitude of everyone is different.

I imagine they will still have to taper the pred slowly - how long have you been on pred now? Pauline from Dublin is in that process as her rheumy has decided it is more likely rheumatoid arthritis, although that is not uncommon that it isn't recognised initially if the rheumatoid factor is negative and it often is in LORA (late onset RA). I think they start the MTX alongside the pred and increase the MTX as the pred is reduced. Has this reg discussed it with the consultant? At least MTX is used some in PMR and more studies are being done with it.

How long do you have to wait before trying it? Is it to be done under the hospital or the GP? They did say I would see the nurse specialist if I was to take sulphsalazine but I couldn't get hold of her to ask her anything at all - wasn't impressed!

Good luck and keep us up to date,

Eileen

Koukla

[/b][i:9f48ae4bcb]his registra. she tell me she thinks I have psyoratic arthritis [/i:9f48ae4bcb][b:9f48ae4bcb]

No Koukla, I would not go with 'she thinks'.

Who diagnosed you with PMR in the first place, was it the Consultant Rheumatologist or your GP?

When where you diagnosed with PMR and what mgs did you start on?

7.5mg and under is classed as a maintenance dose.

If you are almost pain free why does she want to change your meds?

Are you having other problems you have not told us about?

Koukla, insist on seeing the Consultant before doing anything - you want a definite diagnosis before you change anything.

[/b:9f48ae4bcb][i:9f48ae4bcb]Thinks[b:9f48ae4bcb][/b:9f48ae4bcb][/i:9f48ae4bcb] is not good enough before changing to Methotextrate which does not cure PMR.

Does it cure psyoratic arthritis? Did you ask the question?

Koukla, you need to assert yourself and be absolutely sure in your own mind before you do anything - ask the questions please.

Book a double appointment with your GP and discuss the whole situation with him. Ask for a full spectrum blood test as well. And see what the results are.

Good Luck and let us know how you get on please.

Hi Eileen

my symptoms almost disapeared after about 8 hours of pred (40mgs)

the reg asked if I have psoriasis, only a few patches no bigger than peas on my legs and back

it seems that the nurse specalist will be sorting it out as my next appointment is with her

I feel that I have done so well being diagnosed april '10 and from 40 down to 7/6 mgs but all the medical people tell me I am too young, 51 when I was diagnosed but it was a few months after my Dad died and I think the stress factor had something to do with it also my mum has PMR

I did have a vision of my PMR burning out and being drug free but now I think I will be on Mtx for ever AND I can't drink

thanks for getting back so soon

Koukla

Oh mrs k

youv'e set my mind racing now

it was my GP who diagnosed PMR

the only other problem is a swollen knee and she wants to give me a steroid injection in it but I had this problem way before I was diagnosed with PMR

I did tell the Reg that I have all the classic symptoms, shoulder pain stiffness in the morning, stiff pelvic area I even told her that when I took 1mg tab instead of 5mg tab by lunch time I couldn't move for the pain

checking it out it seems there is no diagnosis for psoriatic arthritis so do I suck it and see? I could laways go back to pred if it doesn't work out

I am so confused

Koukla

Koukla

Book a double appointment with your GP and talk it all over with him/her.

Also download the British Society of Rheumatologists, Guidelines on the Diagnosis and Treatment of PMR issued June 2009.Read and digest.

(www.pmr-gca-northeast.co.uk under Useful Medical Information) or the NHS website or the BSR website.

You will read that Methotextrate is a steroid sparing agent and is normally used with PMR once you are under 10mgs per day or if you are having trouble with the steroids. But you take the metho and steroids together and as the metho dosage is increased the steroids are reduced. Then you are on the metho and no steroids.

Neither the metho or the steroids will cure PMR, there is no known cause or cure currently.

As to the problem with the knee, the steroid injection is usually used for gout, or fluid etc. I have not had one but others have whilst taking steroids and there was no problem.

Because if you are a happy bunny now, why change - you need a good reason. TALK TO YOUR GP. Get the confusion cleared up and them make your own mind up.

Koukla

I meant to add, the medical people are up the creek on the age spectrum.

Tell them to Google and ask the question, lowest age for a person diagnosed with PMR - its 26.

They used to say - late 60's onwards, they have revised that downwards.

I'm with MrsK on this - your response to pred is absolutely what almost everyone has taken as the primary way of distinguishing between PMR and other forms of inflammatory arthritis. Yes, other things respond to pred - but not in the amazing and immediate way PMR does, all the literature describes it as characteristic.

Now - unless of course this little whizz kid has access to research that noone else seems to have heard of - it seems to me you can't just, on a whim, change someone's dx because you think you know better. There has to be something rather more concrete in place.

I'm getting seriously p'd off at this \"you're too young\" mantra. It's bull. The medical literature has a report of a 24 year old dx'd with PMR on the basis of the response to pred. Google youngest polymyalgia rheumatica, it's in a GP sort of forum thing, in fact the reference is over on the other forum, the one that links from the right hand side of the homepage for the pmr gca northeast support group, because I found it for someone who was asking about the possibility of very young patients. It's increasingly being identified in under 50s and I was only about 52 when it first started - wasn't dx'd, I got the too young, no abnormal blood values, stuff too. I responded in 6 hours to 15mg. Only today I have read medical abstracts and articles where they state it is extremely likely that both pmr and gca are actually much more common - the gca on the basis of postmortem examinations, and they don't usually lie! It's one of the jokes - physicians know nothing and do everything, surgeons know everything and do nothing and pathologists know everything and do everything, just they're too late! AND if your mother had it - you are more likely to have it than other people.

And to answer MrsK's question - like pmr psoriatric arthitis can't be cured, only managed. If you couldn't get your steroid dose down, I'd have some sympathy with the concept of it not being pmr, but if the course so far has been smooth (in as far as it can be with pmr) and the reductions steady at a slow rate - SECOND OPINION, from the person who has accepted your GP's dx from the outset. You are lower than I am, from a higher starting dose in less time - and the rheumy here sees that as fine. And looking at everyone else - so would most doctors.

Good luck - stand your ground. And see your GP soon and discuss it with them

Eileen

Here is the reference for the 24 year old with a presumed dx of pmr on the basis of the response to steroids:

\"The reference is below and mentions some other cases of very young patients.

Whittaker J Fam Pract 1998; 47:68-71.\"

Even we are able to get at this publication and read the entire paper - and it is in ordinary English for a change!

Eileen

Hello Koukla

It's good to hear from you again after such a long time and good to hear that things have been going so well PMR-wise. Such a surprise to read, therefore, that they want you to add MTX into the mix! :?For you to be on the present dose (and also one which is considered to be a safe dose) after just over a year after commencing on 40mgs is excellent.

During my first year of undiagnosed PMR, the consultant asked me whether anyone in my family had Psoriatic Arthritis. When I said \"No\", he then asked if I had ever had Psoriatic Arthritis.....\"No\" again, which seems to confirm what Eileen has alredy said about them being keen to make such a diagnosis.

If it were me, I would be hot-footing it to the GP, as both Eileen and Mrs K have already recommended. It just doesn't make any sense to me to be upsetting the applecart PMR-wise when you are feeling so well and comfortable at your present dose. However, if Psoriatic Arthritis is definitely suspected, then perhaps you could at least seek a second opinion before embarking on a change of medication.

I do wish you well, Koukla - when you see the GP, remember it's your body and you want the best for it (as Eileen says \"stand your ground\".

Do keep in touch.

MrsO

Hi Koukla & all,

I just got back from Spain late on Monday so have been busy catching up on all the posts.

I was going to reply to this yesterday but as I had an appointment with the rheumy this morning I thought I would wait to see what pearls of wisdom he had today :roll: :wink: .

Koukla...as Eileen said, my rheumy now is 99% certain that I have Rheumatoid Arthritis as well as PMR. I started on 10mgs of Methotrexate 7 weeks ago, increasing to 15 after the first four weeks and taking 10mgs pred with it.

If anything, I have actually got worse during that time as I have had a lot of pain in both wrists and knees, and only felt a bit better when I was in the heat of Spain.

At my appointment today, the rheumy said my illness was clearly still very active and needed to be treated aggressively, so I had an injection of Cortisone to my right wrist and my MTX is up to 20mgs and steroids up to 40mgs tapering by 10mgs a week until I get back to 10.

It is very frustrating to have to start over again on such a high dose of the steroids, but I am quite incapacitated by pain & stiffness at present so am willing to take arsenic if it would improve mattters :cry:

Just to make you all smile....I managed to climb into the swimming pool on my first day in Spain....but had no idea how to get myself back out again :lol: :roll:. Hubby lifted me out eventually as my hands were too weak to pull myself up the ladder :oops:. Thankfully the heat did its trick and I got a bit stronger during the week....definately better to use a walk in pool in future :wink:

Hope the rest of you are faring better.

Love, Pauline

Welcome back Pauline and sorry to hear your pains :cry:

What a bummer (if you'll excuse the term!). Hope damp old Dublin doesn't make the pain even worse again. Arsenic seems a bit extreme - or were you thinking of the transference of suffering principle? :wink:

Is it LORA as well as PMR - or is the LORA mimicking the PMR? I'm sure it must be terribly difficult to tell which is which. Though - just occurred to me that I do remember seeing somewhere that RA doesn't usually have the muscular part, more the joints. Is that right?

Hope you are feeling better soon - how long is he going to persevere with mtx before trying another DMARD? Can mtx be used in the cocktails? Or am I asking too many questions?

Eileen

Hi Eileen,

He does think that because of the muscle pain that it is both....aren't I the lucky one :roll:.

The plan is to give the higher steroids and MTX two months and if there is no improvement, or I get more symtomatic in the interim then he suggests a drug called Etanercept which would be instead of the MTX or possibly stay on both depending on clinical picture & blood results.

The arsenic will be held in reserve :lol:

We saw a lovely apartment while in Spain that we have put an offer on so all being well I will have a home in the sun within a few months 8)

Love,

pauline.

Dandy :roll:

Never been to Spain! Where is the flat? How many ex-pats? :wink:

Eileen

Hello Pauline and welcome back although what a shame the holiday was marred by your pain. Looks as though that home in the Spanish sunshine can't come soon enough. Do hope the higher doses do the trick for you and soon.

MrsOx

Hi Pauline

Sorry to hear of your pain and possible additional illness

I have had more pain in my wrists lately but it is normally only first thing and it does go within an hour so not sure I want to even mention it to the Dr !

A place in Spain would be lovely for you Is it good for flights from Dublin ? and I hope it has a walk in pool !! I know how you feel I can always remember my conundrum in the early days as to how I was going to get out of the bath I thought would do me good !! Showers ever since !

Hope you have some improvement with the extra medication

Mrs G