hello to all

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Neverending
Neverending Member Posts: 11
edited 28. Nov 2023, 14:04 in Living with arthritis
This is my first post, so please be nice :D
My name is Ian, I am 59 very soon and have had RA for 10 years or so, I take Cimzea now via injection and for me it has worked well and my symptoms are under control..

My current situation is this, I have weak legs, not just aches I mean weak. I work in construction ( self employed) not workednow for 10 weeks.. My mri was clear ( I’ve had cervical and lumbar fusion years ago ). Saw a neurologist, front thigh weakness, I had a blood test for muscle CK inflammation, clear. I’ve just had an EMG and awaiting results... I have been told it’s not nerves could be muscles ( myopathy).. Has anyone out there had similar, I know RA can effect the muscle.... I’ve checked with the distributor of Cimzea and they say Highly unlikely it would effect my muscles... I’m trapped at the moment in a nightmare, I can feel that this is not going to be easy to diagnose... I waddle around like a duck with weak knees,On crutches if I go out, or a chair if the walkers nag is too much.... Can anyone else on here shine a light on this.... Best wishes to all... Ian

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  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Hello Ian welcome to the Versus Arthritis forum on behalf of the moderating team. Don’t worry we are always nice on here and for a first post you have done very well!


    We have a very supportive community here who will help you in any way they can. Hopefully one of our members will be along with their experience soon.


    I popped your, issue that of muscle weakness, into the Versus Arthritis search engine and got the following research grant information which suggests to me that what is happening to you is not that uncommon:


    https://www.arthritisresearchuk.org/research/grant-tracker-items/2012/why-do-people-with-inflammatory-conditions-lose-muscle-mass-and-strength.aspx


    Best wishes



    Ellen
  • Neverending
    Neverending Member Posts: 11
    edited 30. Nov -1, 00:00
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    Thanks Ellen. I read the article. I will have to see what my diagnosis is, my neurologist did say he sees a few people each year with RA related muscle issues.. I’m just getting so depressed as weeks go by quickly. I paid to see these specialists as the dear NH S have not yet come forward with any appointments since I first saw my GP last December. I am seeing my Rhumatology specialist nurse on Friday 8th feb, my consultant app is 27th feb.. I am told it could be polymyositis.. My worry is no work no income.If this happens I am basically written off, not being negative as I have worked for 40 years. With no skills that intail sitting on my bottom for 8 hrs a day, I am limited... Anyway if anyone has any ideas let me know.. The only A I had in school was for attendance.... :D
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    Hi and welcome from me too though I'm afraid I can't really help. I've had RA for many years but all the weakness is joint-related. It's just a bit of a b*mmer if you get add-ons.

    I hope the rheumatology nurse can help though it does sound more of a specialist's job.

    If the worst comes to the worst - and let's hope it doesn't - I'm sure there will be many easier jobs you could do. Not necessarily like but they might at least save you from the stress of anxiety as arthritis feeds off stress.

    Good luck and please keep us in the loop.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Neverending
    Neverending Member Posts: 11
    edited 30. Nov -1, 00:00
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    Hi stickywicket, Tnx for you nice message.
    I must say it is such a struggle at the moment... ref my Cimzea... today it’s the 10 th day into my last injection,it seems to follow a pattern, I get very fatigued until my next injection on Sunday, my legs ache even more.. I am hoping it’s not RA effecting my leg muscles. Ellen on here sent a link that I read, it seems the outcome is worse than a muscle disease... :(

    I think I may need a higher dose of Cimzea, this will be discussed on Friday this week with the nurse.

    ref add ons, to be a manning minny I also have oesteo in my spine in places and recently I was told after a d a bone scan the neck under the ball that connects the hips is starting to get thinner... At least in still here.... On good thing I done get swollen joints with my RA... well at most my hands but very rarely.. Hope your day is going well... regards..