Newbie in need of support 😊

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Bramble2000
Bramble2000 Member Posts: 2
edited 28. Nov 2023, 14:09 in Living with arthritis

Hi everyone,

I have just been diagnosed with PMR 🫤 via inflammation blood markers and a PET/CT. I also have Ankylosing Spondylitis. I’ve just turned 52 but I think my PMR started almost a year ago. My Rheumatologist said I was too young for PMR so stopped the Prednisilone that my GP has prescribed which of course took away all my pain and stiffness. It’s taken all this time to get the diagnosis.

Due to the severe pain and stiffness and not knowing what was wrong etc, I have become almost bed ridden and housebound. I am single also looking after my 17 year old who has severe ME. I have no support.

My problem is that I simply cannot tolerate the Pred. I just can’t. Yes, it takes away the severe pain but it literally makes me feel like life isn’t worth living, I can’t describe it any other way. Rheumy says that the Pred is the only treatment. Why can’t I have monthly Depo injections as I get way less side effects from that?

Also, I’m well aware of GCA which I do not have at the moment, thankfully. Someone told me that if I don’t take the Prednisilone for the PMR, I’m leaving myself wide open to GCA. Is this true?

I really need an OT assessment but don’t know where to start. It’s so hard to get a GP appointment . My muscles have wasted so much.

Many thanks, and Happy New Year. X

Comments

  • noddingtonpete
    noddingtonpete Moderator Posts: 1,065
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    Hello @Bramble2000 and welcome to the Community. We are a friendly and supportive group and I hope that will be your experience as well.

    I understand that you have been diagnosed with PMR and having problems with the Prednisolone. I don't take this myself but I am sure others will connect with you who do to share their support and experiences. In the meantime have a look at the following from our website.

    also have a look through the following

    Joint Pain Wellbeing Programme | Nuffield Health It is initially a free programme which might be of some use to you.

    Please keep posting and let us know how you are getting on.

    With best wishes

    Peter (moderator)

    Need more help? - call our Helpline on0800 5200 520Monday to Friday 9am to 6pm

  • Skinny Keef
    Skinny Keef Member Posts: 1,094
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    Hi @Bramble2000

    I know that feeing of life not worth living all too well so I really feel for you. Although I have a different type of arthritis pain is pain and when it manifests as mental torture it is very difficult to cope sometimes.

    I bet you’ve been looking back at this thread and seeing the views go up and no comments which was making you feel worse, but it’s just that when someone posts with such a strong topic as you have I think many on here don’t really know what to reply. I’m not saying I do either but, I can definitely say I understand how you are feeling and that I have definitely felt like this and probably will do again and it’s not a nice feeling.

    I get through it sometimes alone sometimes with help from others. I was very close to doing something terrible a couple of months back as I was on my own and feeling miserable and my wife rang from work just to see how i was and for a chat and it lifted my spirits and obviously i was so glad I was still here to take the call. There’s often something around the corner that will lift your mood.

    This forum is a wonderful place to converse with others that are in a similar situation to yourself. Please stick around and chat. You’ve more than likely got stuff to add that will help others here too.

    I haven’t been on here very long but I now can’t leave the place alone.

    All the best and hope you feeling even just a little more cheerful soon.

    Keef.