rheumy appointment pt 2

Hello all. In pt 1 I said about my appointment with the rheumy who said the prm was inactive but that fibromyalgia has appeared in its place. I have now seen his letter and my GP and can expand on it. T he pred reduction plan will take over 12 months to get to v, low/zero, and I am on amitryptaline for the FM. it goes 15/10 for 2 weeks, 10 for 2 weeks.Then 10/5 for 2 weeks. Then 5 for for 2 months and finally a 1mg reduction every 2 calender months.

The symptoms seem very similar so far but the early morning stiffness goes after moving around for a few minutes, and so far the 10mg amitriptyline has not done anything but the GP said I could double it , of course alcohol is forbidden with this drug.

I had a bone density scan this week and hope I can stop the alendronic acid and calcium tablets soon

On the positive side I am going to acupuncture and that feels good for a day, and have bought an e-bike which is a life changer. an hour a day in fresh air is great even when walking is not inspiring.

Thank you all for your sharing and caring compassion and best wishes to you for a pain free and Happy Christmas.

Dave

15 Replies

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  • Happy Christmas to you too. If I'm honest seems a very strange reduction plan to me but keep in touch and let us all know how you get on .

    X

  • I read this with great interest as my mother who is 77 was diagnosed with PMR in April this year after being very ill for several months. She is also on a slow steroid reduction programme but recently she has experienced several instances when she felt a great heaviness in both arms and across her chest, so bad that she struggles to lift her arms. Many tests have proved to be inconclusive and it is not heart related, last ESR came back normal so doc says that PMR is inactive.

    As a sufferer of fibromyalgia myself for several years I first thought that this may also be her problem however she improved dramatically once she began taken the steroids so the diagnoses was deemed to be correct. Her recent problem has made me wonder for weeks now whether in fact she could have both PMR and fibromyalgia. She has also had a problem with her balance for several months now and the docs think this is unrelated to the PMR. She will be having a neck and head MRI next week to see if it's a problem with her neck causing the dizziness but if that comes back clear then where do we go from here?

    It breaks my heart to see her suffering and she's said on more than one occasion that she wants to die. She now thinks that everyone thinks it's in her head and she's beginning to wonder if they are right.

    Does anyone know if it is possible to have both and has anyone experienced similar symptoms?

  • It is possible to have both - however, it is also possible to be experiencing a flare of PMR but the blood markers don't show it while the patient is still taking pred. GPs seem woefully ignorant of the fact though (so are some rheumies to be fair).

    I appreciate they say they haven't found anything cardiac - but did they do any tests while the heaviness was happening? I was told for some years that I was fine, no heart problems. But they never were able to check during an "episode" - it turned out to have been due to atrial fibrillation.

  • Thanks for replying so quickly, yes my mother was taken to A&E at the beginning of the month when it happened and they hooked her up to the various monitors and kept her in overnight before saying that everything was normal and sending her home.

  • Was it still ongoing at the time? It is horrible when you KNOW something isn't right but they can't find what it is!

    However - the ESR may be "in normal range" but that doesn't mean the cause of the PMR symptoms is inactive, it just means if it is active the dose of pred is enough to combat the whole of the inflammation it is causing and so no extra proteins are being made due to the inflammation so the markers don't rise. The underlying autoimmune disorder is still active - and that makes the muscles intolerant of acute exercise/activity.

  • ShellyC23,

    Hi I just wanted to respond as someone who has both fibro and GCA and MS so yes it is possible. I have had fibro for 20years,MS for 15 years and GCA for 18 months. So no it is not all in her head and it may be she is suffering with depression which for me became very bad when I was diagnosed with GCA. I think it goes with the disease because when I become symptomatic (flare) It comes back with a vengeance. I also notice when I up my pred by even 1mg it can make a big difference with my head pain. It is been said many times on this sight symptoms that come back are related to a flare and that the pred may not be enough.. I also had a doc who had me reduce too quickly and believe me as we all know our own bodies cause we live with the disease we should trust our bodies. I am working on this myself. I wish you and your mom all the best and hope you get things straightened out.

  • From reading posts on a couple of forums I think I can safely say that more than a few people have a double diagnosis of PMR and fibro. However I think the first thing to check is whether her reduction of pred has been a little too much and too fast? This will almost certainly signal the return of pain, and if it's relieved by increasing the dose to where she last felt comfortable (some doctors suggest across the board 5 mg increase) then it more likely indicates either pred withdrawal or that she still needs the higher dose. If she does feel better at a higher dose, the next step is to stay there until sure she is stable again and then begin a very very slow reduction, like the dead slow nearly stop method described on this forum. Pain and disability will make anyone depressed. I hope this can be sorted out soon and 2017 is a better year.

    Experts will be along to offer some suggestions about the dizziness, but the most obvious thing - has her iron level been checked?

  • She is currently taking 9mg of pred having decreased from 10mg two weeks ago. She has been told to stay on this dose for another 4 to 6 weeks before dropping to 8mg. I believe that iron level has been checked and was OK but I'll ask doc again at next appointment. Thanks

  • That is exactly the place where I first felt returning pain. I found the dead slow nearly stop plan after about nine days at 9 and getting worse. I went back to 10 for about three weeks and tried reducing again much more slowly. Since then (about 14 months ago) I've got down to 2.5. It's recommended that we never reduce by more than 10% at a time, and 10 to 9 is really on the knife edge. A lot of people find it a sticking place - along with other stages later, like 5. :)

    healthunlocked.com/pmrgcauk...

  • I have tried to respond, do you want to call me on 01900 824711?

    Dave

  • It isn't a good idea to put phone nos in a public forum.

  • a slight pressure then it is FMS

    Best wsihes Dave

  • If that means fibro can be differentiated from PMR by putting slight pressure on a point - it isn't true. During the 5 years I had PMR symptoms before it was dx'd there were areas that hurt if pressure was applied and there was an overlap in that I had trigger spots that hurt that are illustrated on the fibro chart - but they weren't fibro, they were due to myofascial pain syndrome and it went with pred. Fibro doesn't respond to pred.

  • PMRpro, yes I take that point, thats why its an old test I suppose, the amitriptyline I have been taking for a week or so now appears not to make any difference, I feel worse than I did a year ago when it was just PMR , but what can you say to the medics?

    Dave

  • You can change your doctor - and I would discuss it with them anyway. They aren't infallible - even though some think they are. But there isn't a lot of point taking amitryptiline if it doesn't work - particularly if it is letting in pain the pred managed.

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