New to PMR

Posted , 11 users are following.

I am  finding it fascinating following the discussions on this forum,  I was diagnosed just two weeks ago and my GP put me on 20mg.  I was feeling rotten on this amount although the pain had lifted.  I was feeling exhausted had a headache,( don,t think it is a serious headache, just lke a tension one)  tingly hands and really spaced out.  She suggested I go to 15 to see if I could tolerate it better.  I am still feeling the same AND my pain has returned .I do not understand the readings that you talk about. Also it sounds as if people take responsibility for their own medication, putting it up or down as they see fit....is this so?  I have always been of the opinion that you  need the  doctor's agreement to change what you  do....I am wondering if I have come down too quickly from 20 to 15 that perhaps I should have been on it for longer.  Perhaps after a while I will sound as knowledgable as the people on this forum. At the moment I feel like a complete novice.

0 likes, 15 replies

15 Replies

  • Posted

    May, I guess your GP reduced your starting dose a little sooner than usually recommended because you were having difficulty tolerating the side effects. Having said that, a starting dose of 15mg is often prescribed and works well for many people, although some doctors feel that starting at a higher dose gets faster and better control of the inflammation.  Apart from two weeks not really being long enough to spend at the starting dose, the problem is that reducing from 20mg straight to 15mg is a bit of a shock for the body to cope with - 17.5mg in the first instance might have proved more successful.

    The "readings" that people mention refer to blood tests (ESR and CRP) which can rise in response to inflammation and can be repeated and used as a guide for reducing the steroid dose, along with symptoms at the time. However, not everyone mounts these raised markers, so rely on their symptoms alone.

    It is true that reading through the posts can give the impression that people are taking responsibility for their own medication "putting it up or down as they see fit".  It really depends on how well their Dr is managing their care, added to the fact that we can all be a little different both in how we present with our symptoms and how we react to the medication, and as we get to know how each one of us reacts personally, we gradually learn what works for us.  Generally speaking, the slower one tackles the reductions, the better, and we have to do our part in managing both the condition and the treatment, importantly giving ourselves plenty of TLC and not overdoing things to give the steroids chance to do their job.

    There are a couple of excellent books available which new patients in particular can find very helpful.  One is called 'Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide' written by Dr Kate Gilbert and available from the National Charity, PMRGCAuk, www pmrgcauk com, and from Amazon;  the other called 'Living with PMR&GCA' produced by the North East PMR&GCAuk Support Group.  You can find further ordering details on the first page of this community.

    Meanwhile, as your say that your pain has returned, it seems as though you need to return to your starting dose and remain there a little longer until the pain resolves before re-attempting a reduction, perhaps to 17.5mg in the first instance.

    • Posted

      Thank you MrsO. My doctor is contacting me this week.  I shall discuss raising my Pred to 20mg  again for a few weeks.. I have already bought Kate Gilbert's book and found it invaluable. I have joined the PRMNorth East group and a lovely lady called Lynne phoned me.  I felt as if I a not alone and soon will get to know what this illness is all about,
  • Posted

    hello and 'welcome' to the club..... sorrry!

    I'm wondering if the headache and other stuff are simply symptoms of the PMR itself... did they come on immediately after starting the prednisone?

    Fatigue is a major component of PMR for me... so feeling tired is just par for the course.

    I agree with Mrs O - try staying at 20mg a bit longer - until you really feel well(ish) and then start a VERY slow reduction..... under your Dr's supervision, of course.

    I do take responsibility for my own medication - under my Dr's supervision - because I'm the only person that knows how I feel... and PMR is such a fickle beast.

    • Posted

      Thank you for replying to my post. I feel as if the headaches got worse when I started on the medication.  I have always been a bit of a headachy person!  but this is constant and like a tight band.
    • Posted

      Sorry to hear you have what we on this forum have but welcome to great support on it from all. I had headaches when I started steroids and I don't normally have them. They eventually eased and I had been forewarned of the possibility by a medic who is a relative. I don't normally have headaches so it was a little bit concerning. Hopefully it resolves soon for you.
  • Posted

    Sorry you are having these feelings.  I started on 40mg. for a month then went down to 30mg  I felt wonderful and had lots of energy in the beginning, but did have trouble sleeping.  I was a happy person who saw the world through rose-colored glasses!  That gradually subsided, darn it.  I did have lots of problems with bruising, cuts that took forever to heal, sothe MD is now tapering more and I am now on 10/7,5 (alternate days) and next week will go down to 7.5 ev. day.  I have had no recurrances of the awful pain and stiffness, just some fleeting back  hand discomforts, fatigue, muscle weakness etc,  So far I have been fortunate, except for the terrible skin lesions I've had treatment for by MD and podiatrist.   Hang in there and stay in close touch with your doctor.  I do hope you begin to feel much better.      Elinor
    • Posted

      Hello elijo, whilst I appreciate that you are currently doing well I do think that your current reduction is too much. The jump,from 10to 7.5 us far more than the recommended 10%. I would be more inclined to either reduce by .5mgs or 1mgs maximum and not by 2.5 as is currently suggested by your MD. regards, tina
    • Posted

      Hi Tina, Your advice is well taken.  I shall reduce slower.  My MD had said 5mg. but I take 7.5/10, slower than he suggests.  I do NOT want a flare!  Thanks for your interest, and the best to you!    Elinor
  • Posted

    Hi May,  I was diagnosed just over 7 weeks ago and like you, my GP put me on 20mg Prednisolone to start with which I took for 2 weeks.  I too felt VERY spaced out and although I didn't have a headache as such I do remember a feeling of pressure on the top of my head. However, the PMR pain went completely which was great.

    After 2 weeks my GP suggested reducing to 15mg. for 3 weeks.  I continued to feel spaced out for a while but by the end of the 3 weeks this had disappeared, or maybe I'd just got used to it!  I am now on 12mg and about to reduce to 11mg on the advice of my GP, at the weekend.  I've had a few aches whilst on this lower dose but it hasn't felt like PMR pain and nothing I can't handle.  The worst thing for me has been the feeling of general weakness/fatigue which is worse some days than others but by listening to other people on this forum I've learned that this is all par for the course and I'm gradually coming to terms with it.  If you have had a return of the PMR pain on 15mg I would strongly suggest that you contact your GP to see what she says.  Good luck.

    • Posted

      Hello Fran, thank you for replying.  My GP phoned tonight.  She did not suggest me upping the dose but is not happy with how I am reacting...I now feel as if I have the flu....all hot and cold and still with the headache and the spaced out feeling. The pain is nothing like it was.  I have to have my bloods done and she is going to make an appointment for me to go the hospital
    • Posted

      So sorry you are feeling so rotten. Are you seeing a Rheumatologist at the hospital? Hope you get sorted soon.
  • Posted

    Hi May

    I was diagnosed with PMR on the 28th April and the doctor put me on 20mg Predisolone, as soon as I started on it I got a tension type headache ranging from the from to top of my head. Also I'm very tired most day even though I'm now sleeping until 7am at the earliest which is great as I was only getting an hour or two when I had all the pain which is 99% now gone. Back to the doctors on Moday to see what he say, I'm going to ask him about GCA because of the headaches just to be sure

    Alan

    • Posted

      Hi Alan thanks for taking time to reply. Having reduced to 15 mg I have been feeling rotten these last few days...like I have the flu.  I cannot sleep.  I wake up at 3 or 4 every morning and cannot get back over. My Gp phoned ttonight.  I have to have my bloods done again and she is sending me to the hospital.  Roll on better days!!!

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