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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Hi Everyone, Just wondering if any of you have any muscle wasting...For the last week I have had terrible hip pain thats preventing me from sitting down properly and stopping me sleeping. I noticed yesterday that there is a large sort of dent on the outside of my thigh where the pain seems to be coming from. I panicked this morning and googled it and it said its muscle atrophy! Caused by not using your muscles enough or long term conditions such as RA! I thought I knew pretty much everything this horrible disease can do but it never fails to surpise me! Going for my infliximab infusion on Friday so will mention it to the nurse. If anyone else has got this please advise...  Love Ceri xx
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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ohhhh Ceri,
poor you.
firstly i don't think googling is a good idea .. have scared myself many a time with it !!
i'm not very active as i have had Osteo in my knee's a good four years now .. so although i can get out and about, i have to park near where i am going ( fortunately have a Blue Badge ) and for any distance it's Hubby pushing me in wheelchair. i don't think i have muscle wastage so try not to panic .. easier said than done i know.
definately have a good talk through with Rheumy Nurse on Friday she may suggest something.
how are you getting on with the Infliximab..?
i reckon it will be the end of May before i start on the Humira.
do let us know how you get on on Friday,
take care,
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Ceri
Yes I too am suffering from hip pain but I do not think it is the joints. I was diagnosed with RA two years ago and my mobility is now pretty bad. I do not think I am using the muscles as I used to so would not be suprised if I am also suffering from muscle wastage. I am seeing a new Consultant Rheumatologist on Thursday so will let you know what he thinks. Like you I thought I only had to worry about joints with RA but obviously not.
I would also be interested to hear how you get on with your Infliximab infusion as I think this will be the next route I need to go down. Good luck.
Take care
Jackie
xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Ceri,
Yes, RA does cause muscle wasting, one example of this is our feet. That's why we get fallen arches and painful feet, with the muscle wastage there is not enough support for the tendons and ligaments to keep the bones in place.
You should ask to be referred for physio and they can give you the correct exercises to do to strengthen the thigh muscles.
Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Wow! I had never heard of that. This disease just gets better and better!...not. Why don't the professionals tell us about these things? At least when they happen we know what it is. I hope your hip improves soon.
Sheila x
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Rank: Advanced Member Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Thanks for your replies girls, will let you know what they say Friday, Suzanne really hope they start you on the Humira soon, you seem to have been waiting ages!
Well Jackie Friday will be my 3rd infusion and as yet no improvement. They do say it can take up to 12 weeks to kick in, so fingers crossed no real side effects with it so far just makes me very tired and dry mouth..
Doreen, im just off to check my feet for fallen arches! Cant believe all the other stuff that comes with RA! Thanks Sheila hope your feeling a bit better xx
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Rank: Advanced Member
Groups: Registered
Joined: 12/5/2009
Posts: 103
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Hi Ceri,I too have muscle wasting but mine is the top of my arms.Last year it was so painful it keep me awake most of the night.I was put on steroids which did get rid of the pain but I was also sent for physio and I've had to learn exercises to do to keep the pain at bay. I was told not to try and rest the muscles as that will only make it worse,instead do some movement exercises every day.I have to try not to overstretch my arms otherwise it's quite painful. Brenda.x
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Rank: Advanced Member
Groups: Registered
Joined: 3/24/2010
Posts: 102
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Hi I am on infliximab, and it is the only med that has been effective so far. Sadly I am having to change to an alternative, as it has caused psoriasis! I just haven't been able to get myself to make a decision on 'what next' as I'm afraid that the alternative may not work.  My joints and muscles were in a bad way before infliximab but I tried to keep everything working - as best as possible - by going swimming when able. I asked to be referred to physio on initial diagnosis and was told by them that too many joints were involved and they could not recommend any excercises  Why is the treatment that we get offered so very different throughout the country
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Rank: Advanced Member Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Hi Beth
I know the treatment varies massively depending where you live! How long did it take for the infliximab to work and how long have you been taking it for? good luck with whatever you decide to try next xx
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Rank: Advanced Member
Groups: Registered
Joined: 3/24/2010
Posts: 102
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Hi I started infliximab in Aug 09, and it worked very quickly (1 monthish?) It made such an improvement in symptoms. By Feb 10 I thought it was causing trouble with my skin and got referred to dermatology but they thought it was not causing the skin change. My skin got progressively worse and by Feb 11 the hospital agreed - it was caused by infliximab. By this time I had a new grandson and was expecting another grandchild to arrive early April. Needless to say - I am reluctant to change and have a possible return of bad symptoms and risk not being able to pick up, cuddle and help with new arrivals! I know I must decide - but keep delaying the decision. I do realise the alternative may work equally well 
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