So, I had my much anticipated first appointment with the Rheumy today. I'm not sure what to think. She's not too convinced about the PMR diagnosis. Says I'm too young and should have been well by now if it had been. Also do not think I have GCA (age). They have ruled out the ANCA-vasculitides and SLE with blood tests.
I asked about the possibility that it might be Takayasu's instead, and if they would consider a to do some imaging of the arteries. She said she will check my history with a team meeting later today and they would decide how to proceed. Might not be of much use to do that now as I have been on pred too long. Perhaps the only way is to go off the pred all together, wait a few weeks and THEN take new blood tests and do an MRI/CT/whatever. She will contact me next week to let me know.
I feel a bit "homeless": back to square one. Hope it's alright with you that I stick around the forum for abit even if I might not have PMR after all. Frankly, I need the your support. Oh, how I would love to have something treatable.
Marie, not sure what the statistics are but they are many patients that are initially diagnosed with PMR and it later transpires they are suffering from another condition. This is an open forum and anyone and everyone is allowed to join. As I said once before we don't send round the PMR police to ensure only those with PMR/GCA use it!!!
How frustrating for you all this uncertainty must be. Let's hope her group talk comes up with a decision that sees some tests done that resolve your issues once and for all. All the best, christina
I think it is a process of elimination & very frustrating for both the patient & the doctor. After a year of being diagnosed with PMR I have a very swollen finger, which my rheumy knew was not PMR. Had an MRI & it turns out to be degenerative anthropathy. He thought it might be RA, but it's not. I think with autoimmune disorders there is a lot of gray area. You will find the answers & I am sure it is treatable. You just have to find out what it is.
Just wanted to ask a question here as I was diagnosed with PMR Tuesday in a 10 min gp appt so as you can guess not much time to ask much and told to come back in a month after reading your forum this week have made an appt for tomorrow to ask for vit d déjà scan etc but no mention of referral to rheummy has been made should I ask for one is this normal practice? So to hijack the original question
Hello jilly, if you have been diagnosed with PMR only then you do not have to be under a rheumatologist. Please read Bristol PMR plan for advise on reduction. I followed the plan until 9mgs then I had a flare. Following the flare I then followed Eileen's slow reduction regime and I only reduce only by .5 mg. what's important with this condition is that it will burn itself out as and when it wants to and not before, so the dose of preds must fit the level of inflamation and not the other way round. I don't want to upset you but you will have this condition for the long haul so I recommend early acceptance of it, then you can live your life, not over doing it!! Good luck, christina
I did. I have changed gp's since then because I was not happy with the other one's cavaliar attitude. It might depend on your insurance. Sometimes you have to be referred by your gp, but it is worth investigating. I think there is a vitamin d blood test & various other blood tests for inflammation. Others here are probably more knowledgeable regarding this than I am.
Hi Marie, also have my first Rheumy appointment next week hvaing been diagnosed by my gp with GCA/PMR in January, a biopsy in Feb confirmed GCA, was onlyreffered because of swollen legs, wrists ankles etc, all this feedback is really helpful to take with me. Stick around I'll let you all know how it goes.
Marie, how frustrating. What on earth is your rheumy talking about that you should be well by now if it is PMR? There is no known cure for PMR and you have it for life, it can go into remission after a couple of years but often takes longer, so although it seems it has gone away, it can always come back again if you are unlucky.
Also there is no diagnosis for PMR as such. It is a matter of discounting everything else. Also if you take steroids and they don't work it is very unlikely to be PMR. Are you still on steroids and did they work and take away the pain?
Yeah, but she is sort of right. I did not react to 30 mgs/day and then on 40 mgs/day for a few weeks I suddenly woke up rested and felt like a new person after 19 years of illness (earlier diagnosed with ME/CFS). The remission passed after just 2-3 weeks, and now I am almost as bad as usual. First I thought it was just temporary, but now I am not too sure. That contradicts a PMR diagnosis even if the symptoms are there. My GP was perhaps wrong after all. I'm still on 40 mgs and now I wait for if I will have to get off it completely to see what happens...
Jilly, there may be no need to be referred to a rheumatologist with a straightforward case of PMR providing your GP is confident of being able to efficiently manage your care, ie be aware of the guidelines for the management and treatment of PMR. However, an expert on PMR and GCA, and president of the National Organisation, PMRGCAuk, gave a presentation at our support group meeting yesterday and he commented that he would prefer everyone diagnosed with PMR to have at least one early appointment with a rheumatologist. New guidelines are to be issued later this year and, no doubt, this recommendation will be included.
Im covinced i need the patience of a saint when it comes to my medical team after 6 mo they dont know for sure if I have RA PMR Fibro or a combination of all 3. Dec 1 started on 20 mg of PRed now down to 7mg which was way too fast. Im calmer now but patience has run out. Im. Switching rheumy on Monday. I too have styed with this forum as daily alot that is going on seems to be my symtoms. Unfotunately many auto immune diseases present the same way and some doctors take the lets just wait and see attitude. Keep faith and ask lots of questions.
I hear you. I went through one gp & two other specialists before I started getting answers (about 6 months). I understand how difficult it is to always pin point what is going on, but on the other hand, some of them need to be better guessers. I have a great rheumy & gp now, but I was in a world of darkness there for 6 months. I just stayed tenacious. Most of us here know more than many with this problem because we found this site & ask questions & question what we are told.
Marie, you have been through things. You were put on quite a high dosage of pred so you could have something else that reacts well to higher doses. Normally people start on 15mg and if that works it is much more likely to be PMR. I think you and she are correct, it is unlikely to be PMR. I hope they find a diagnosis. Were you checked for vit D deficiency out of interest?
Which is all well and good - until the rheumy says "it can't be PMR because you are too young/normal bloods/or whatever" as happened to me and also now to Marie. Subsequent rheumies are all perfectly happy it is PMR in my case and I have had it for 10 years plus. So the comment to Marie of "you'd be well by now if it were PMR" is also rubbish.
Where I would agree with Marie's rheumy is that the response to pred is not typical of simple PMR and this is something that is all too common where GPs know half a story - that PMR responds to pred. Then they can't be bothered to read that it responds to a moderate dose and any patient needing more than 20mg to get a dramatic and sustained response belongs in the hands of a rheumy - and all it needs is a very quick google to find that out.
The GPs haven't got time to spend long enough with the patient let alone having "a very quick google" - Mike was just told this morning that his appointment was approaching the 7 minute time allowance (she'd requested the appointment connected to a Vit B12 result)! She managed to palm him off with a first prescription for statins though - his cholesterol is just 4.8. Obviously no time to tell him the important HDL and LDL levels!
My GPs in Durham used google - it usually speeded up the consultation! What I mean is that if they have patients with an illness thay don't know much about - a bit of basic knowledge would be very helpful. This site has PMR and GCA information aimed at doctors - it takes a few mins to find it and be sure you are doing it right.
I trust Mike will not be cashing in the statin prescription? Who cares what the HDL and LDL levels are - the total is quite reasonable. Since when is vit B12 associated with cholesterol? And she could have done it by phone - much more quickly
Just to add to the mix.....My appointment that didn`t go too well on Tuesday (I posted on here) the Rheumy said, no-one taking 10mg or over (like me) should be in pain with PMR!....oh dear
I'm really not a vindictive person - but I hope one day they get PMR. Badly. Even at the top doses the expected response is 70% - that leaves 30% or possibly pretty awful pain left that doesn't respond to anything else. I have my own theories on a lot of that but nevertheless...