Polymyalgia Rheumatica

elsiejoy
elsiejoy Member Posts: 4
edited 20. Aug 2010, 05:57 in Living with Arthritis archive
Is there any body out there who suffers from PMR? I don't know any one else with this illness and feel so isolated

Comments

  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Elsie,

    Welcome to the forum his lot are a good bunch. You are not isolated now and here there are some, I am not one but they will be along soon I am sure. We all feel the isolation at times but now since I have found the site I have lost that feeling over the bones. Take care Cris
  • annie_mial
    annie_mial Member Posts: 5,614
    edited 30. Nov -1, 00:00
    Yes, I have it, Elsiejoy! Had it for quite some time. I also have other medical problems. I will send you a private message.

    Annie
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Dear Elsiejoy

    Welcome to the forum. I am so relieved to see that Annie has seen your posting so promptly. You will not feel so alone now and that must be of great comfort to you.

    Love
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • frogmorton
    frogmorton Member Posts: 30,086
    edited 30. Nov -1, 00:00
    Hi Elsie

    Good to meet you :)

    I don't have it myself, but Annie will look after you.

    There are lots of things about it which lots of us will relate to such as the stiffness and pain so you will get lots of support on this forum

    Love

    Toni xx
  • gretta
    gretta Member Posts: 74
    edited 30. Nov -1, 00:00
    Hi Elsie

    My husband has polymyalgia rheumatica. He is on prednisolone for it. Pills work very quickly to get relief. Only problem is if you aren't careful you put on weight on the tummy area. Otherwise he copes very well with the medication.
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Thank you Gretta for replying. It must help you too, to know that there are a few others on here who have or know someone who suffers with similar. As Elsie says you would feel very isolated otherwise and I do not like to hear that. :)

    Love
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • joyful164
    joyful164 Member Posts: 2,401
    edited 30. Nov -1, 00:00
    Yes, I have Polymyalgeria Rheumatica. It manifested itself about 18 months ago now. Usually, 48 hours on a high dose of Steroids will make it calm down. I was on 20mg a day to begin with an then lower the dose over a given period until you are on just a 'caretaking' dose of 4 to 2.5 mg a day You wll find it extremely painful in your thighs, upper arms and shoulders and you will experience a certain weakness in your muscles. It affects the linings to the muscles. You will probably feel like you are about to have flu just before a flare up and when it starts may have to increase your steroids a bit for a couple of days again until it calms down.
    You should consult your GP when you feel that you are having a flare up before you change your steroid dosage.
    You will also be prescribed Alendronic Acid Tablets, which you take one off per week. These are to protect the bone marrow in your bones because continued use of steroids can cause osteoporosis.

    No double you have googled the condition and this will also give you an insight of the condition.
    I am having a CT scan next Monday because I have a lump appeared on my forehead above my eye. I am hoping it will prove that I do not have Giant Cell arteritis. I don't think I can cope with anything else. but if it does prove I have got it then we just plod on don't we?

    Goodluck. There is a PMR and GCA Web site which you can join and I find this quite useful to find answers.
    The Helpline Team were putting together a Helpsheet together for this condition. I don't know if they have done it yet.
    Joy
  • elsiejoy
    elsiejoy Member Posts: 4
    edited 30. Nov -1, 00:00
    Many thanks for all these replies...there are others out there with this annoyance...

    I refuse to take steroids of any sort and thankfully my rhuematologist and GP were forward thinking enough to agree to my daughter...a registered homeopath treating me. (She had to submit a detailed care plan) Acupuncture sadly, does not work on PMR hip pains...too technical to explain here but it is the 'wrong sort of pain'....has done wonders for my back problems though!

    I suppose I live my life and cope with the pain by 'distraction therapy' and walking is still fine within reason..can no longer do the long distance I once could and bus rides are limited...most annoying when i have just got my free bus pass...lol

    Have seen the North East PMR/GCA web site..thank you to those who recommended it. Look forward to 'chatting' with you some more...


    oh....even though Elsie is my first name I've always been called Joy... :D
  • annie_mial
    annie_mial Member Posts: 5,614
    edited 30. Nov -1, 00:00
    Hi Joy (I will try to remember to call you Joy) and good morning.

    You are very lucky to be able to cope without steroids but they have their place, without them I would not be here, so although I loathe taking them I am grateful for them also.

    I'm glad you have seen the website and as I have said, if you would like to contact others going through the same thing, try the Patient Experience website.

    Not sure where in the country you are - I'm in the SE - but it doesn't look a very good morning out there!

    Annie
    xx
  • elsiejoy
    elsiejoy Member Posts: 4
    edited 30. Nov -1, 00:00
    Trouble with steroids Annie is that their side effects far, far out weigh any good they do. they are poisons to the system
  • annie_mial
    annie_mial Member Posts: 5,614
    edited 30. Nov -1, 00:00
    Yes, I am aware of that, Joy. However in my case, I needed some quality of life which I could not achieve without taking the steroids. I was not in circumstances where alternative means could have been used as they take such a long time to have any kind of effect and in any case was in too much pain to consider it.
    I was wholly reliant on my husband to get me out of bed and dressed and needed assistance with most things.

    Annie
  • dorcas
    dorcas Member Posts: 3,516
    edited 30. Nov -1, 00:00
    Hello Joy!

    I don't have the same arthr as you so can't comment on that, but wanted to welcome you to the forum!

    hope to chat with you around the pages. Iris x
  • joyful164
    joyful164 Member Posts: 2,401
    edited 30. Nov -1, 00:00
    I hate the idea of putting 'poisons' into my system. I asked my gp (who also has PMR) about the amount we have and he told me that it was quite minimal in fact. 15 mg has been the highest for me.
    As I said before 2.5 mg caretaking dose is just enough to stop me having a major flare up. Like Annie, I would not hve a life without these 'poisons' If you consider the 'burden' on heart and lungs etc that pain can cause, you need them to be able to breath. I have found the small amount of steroids I take helps my breathing. I suffer from asthma, but not to the same extent as others.

    My dil always had the belief that she didn't ever want poisons in her system and she has been fighting Non Hodgkins for the last 5 years. Without them she would be dead now. While she is alive, there may be a cure for what she is going through now fighting the bone marrow transplant.

    About walking and taking exercise. If you do too much with PMR yu can make it worse. My GP told me that.

    Joyful
  • gretta
    gretta Member Posts: 74
    edited 30. Nov -1, 00:00
    Hi Joy

    I have posted on this topic about my husband having Polymyalgia Rheumatica. But thanks to you I now understand what my husband is going through. Forgot to mention that he is also on Omeprazole to protect his stomach from prednisolone. He had been having ulcer problems because of the medication.
    Thanks
    Gretta
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Thread bumped up for Dougal :)

    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.

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