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Rheumy appointment - not sure what to think

Posted , 10 users are following.

marie09535
marie09535

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

2 likes, 24 replies

24 Replies

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  • freda68872
    freda68872 marie09535

    Posted

    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.
  • ptolemy
    ptolemy marie09535

    Posted

    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?

    • marie09535
      marie09535 ptolemy

      Posted

      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...
    • ptolemy
      ptolemy marie09535

      Posted

      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?
  • jo42444
    jo42444 marie09535

    Posted

    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.
    • mary68968
      mary68968 jo42444

      Posted

      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.
    • EileenH
      EileenH jo42444

      Posted

      They can't know for certain - there are no tests they can do that will give them a 100% answer.

      Apparently a not unusual time to a definite diagnosis (where possible) in autoimmune disorders can be 10 years.

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