1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

is it PMR or Fibro

Posted , 6 users are following.

lindsey65522
lindsey65522

Afternoon every one,

I have been on the Fibro forum here for a long time and find it very helpful, my history is that for over 20 years suffered general overhal pain but diagnosed around 4 years ago with fibro, given gapapentin and co-codomals, kind of got on with it but towards the end of last year pain really increased so much that my gp sent me to a/e and i had a quadriple bypass in December as some of the pain was Angina, Came out of hospital in January my leg got infected and i have been going back and forth getting this dressed, in the meantime see my Rem

otoligist who suggested PMR as my ESR levels was well over a 100. He gave me Predislone 5mg 3 aday for 14 days and to be honest I havnet really felt any better still the same aches and pains, i worry more because of what happened with the heart, anyway he said i would king of know instantly if it was PMR as the medication would make a difference so im thinking it isnt, but what i am worried about is a pain in my lower jaw i have had a few weeks ago, the night before i see my gp and he sent me to hospital i had a pain in my jaw but this is different its more of a ache, has any one had this or knows what it could be.

Thank you for your time in reading this. xx

0 likes, 12 replies

12 Replies

  • MrsO-UK_Surrey
    MrsO-UK_Surrey lindsey65522

    Posted

    lindsey, can you elaborate more as to your area of pain, ie is it legs (top of thighs), arms, neck?  If you do, in fact, have PMR, you can expect to feel an improvement in pain of around 70% within a week or two of starting the steroids, sometimes within hours.  However, some people find that they need a slightly higher starting dose than 15mgs to feel a difference.  This can especially apply in the case where someone may be on the larger side in which case they may need 20 or even 25mg, all taken in one dose first thing in the morning.

    The pain in your jaw is a bit concerning - would you describe it as a continuous ache or does the pain occur mainly when chewing food?

    We may be able to help further if you can give us a little more detail.

    • lindsey65522
      lindsey65522 MrsO-UK_Surrey

      Posted

      Hi thanks for your reply, ive only taking them for around 4 days, and it is a lower dose i think and i am around 2 stone overweight, pain is mainly arms, shoulders, neck and thighs, so i will continue and see what the rehmo says on Friday,

      Pain in my Jaw comes and goes, its isnt really really painful its like an ache, is this something you have had?

  • Anhaga
    Anhaga lindsey65522

    Posted

    I wonder why you were told to take the pred in doses of 5 mg three times a day.  Usually we start with a single dose of 15 mg in the morning with food.  It's felt that this deals with the inflammation more effectively.  Still, I'd have thought you would have felt some relief after several days.

    • lindsey65522
      lindsey65522 Anhaga

      Posted

      Hi sorry yes its three tablets all together in the morning, with breakfast.
    • celia14153
      celia14153 lindsey65522

      Posted

      Hi LIndsey, what a rotten time you're having - so sorry. I had to go up to 20mg pred before I got relief, and it took a couple of weeks to get the right dose and make an impact.  Pred doesn't deal with all pain like a magic potion as it's for muscle inflammation but arms shoulders and neck are fine. I still have the odd joint stiffnesses in the legs and feel it if I overdue it. My GP said I could go up to 25mg but I got dizzy so reduced it back to 20mg. 

    • lindsey65522
      lindsey65522 celia14153

      Posted

      Hi Thank you for your time in replying, i am going back on Friday so dont know if he will incress this or take me off, but i do feel slightly better but not the instant releif he told me i would feel.
    • EileenH
      EileenH lindsey65522

      Posted

      Some people take longer, especially if the dose is a bit low for them. YOu could ask about trying 20mg before abandoning the idea of pred.
    • Anhaga
      Anhaga lindsey65522

      Posted

      I first felt that I might be a little better about six hours after my first dose, didn't have as much pain when standing up.  That was a Tuesday.  Oddly enough I have no recollection of the intervening days, but on Friday of that week I got up and realized after a few minutes that I had not had to plan how to get out of bed.  So I suppose it wasn't instantaneous for me either, but it was certainly effective, and for the first few months on the higher doses of pred I had no pain, even OA and other aches and pains vanished.  

    • Michdonn
      Michdonn lindsey65522

      Posted

      Lindsey 655522, I had to jump from 7 mg to 30 mg of Phedinsone over a period of weeks before I got any relief and then it took weeks before I was PMR normal. Each individual case is different and it appears that Phedinsone works a little different on each individual, but it does work. Keep smiling! 🙂

  • EileenH
    EileenH lindsey65522

    Posted

    It COULD be GCA - giant cell arteritis, a close relative of PMR and it would account for your very high ESR.

    You are taking the pred all as one dose in the early morning aren't you? It works far better than split over the day. 15mg is absolutely the bottom end of the dose range for PMR and nowhere near enough for GCA. Many patients need 20mg for PMR so perhaps you need a bit more. (OK, see that is answered).

    Is the jaw pain worse when you chew or talk? And then goes away when you stop?

    • lindsey65522
      lindsey65522 EileenH

      Posted

      Hi i have read a little about GCA and didnt like the sound of it, is there other tests other that the ESR they can do for it?? i think he just wanted to see how i went on the pred, also i am on a lot of other medication for the heart, blood pressure and diabetices although he did say it wouldnt harm.

      The Jaw thing is just a come and go niggling aching pain, it seems to be there consistantly

    • EileenH
      EileenH lindsey65522

      Posted

      They can do a biopsy of the temporal artery but it is only positive in about half of cases - when it is positive it is 100% certain but being negative only means they didn't find the giant cells they were looking for. Some places can do an ultrasound of the artery and a couple of other arteries but it isn't widely available. Having PMR and suspicious GCA-type symptoms makes it more likely.

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.