Muscle wasting?

kathmcg Member Posts: 4
Hi, I'm new here but need some help.

My mother's had RA for about 3 years. It came on suddenly and viciously, then stabilised. She's tried various drugs, didn't get on with methatrexate and had lots of steroids which did help.

This summer she began falling over a lot - basically her knees just giving way. Eventually it got so bad she went into hospital where she's been for the last 3 weeks. Now she is unable to stand or walk at all. Her knees just don't hold her. Today I went to a meeting with the doctors and physios. They told us they've done all possible tests and ruled out all causes, so the weakness must be down to the arthritis. Is this a common progression of the disease?

Mum's to be sent home in about 10 days. SHe'll have to have carers three times a day, and lots of equipment at home including a hospital bed and a hoist and a wheelchair. Just over a month ago she was walking around with a stick. Now they tell me she will probably not improve and might allways be in a wheelchair. Does this sound like it is all due to the RA?


  • helpline_team
    helpline_team Posts: 3,024
    edited 30. Nov -1, 00:00
    Dear Kath,

    Thanks for your enquiry to Helplines. You must be very worried about your mum's situation. This is sounds a really complicated problem where our role may be more to hear a lot more detail about what's happened and then be able to talk you through the kinds of support availble.

    We may not be able to answer your precise question, however as it's very medical and seems to be an answer that the doctors themselves are struggling with.

    I'd encourage you to ring us (on our freephone) if you are able. But if not here are some questions which we might ask you in order to get a fuller picture and hence offer ideas to explore...

    How old is your mum?
    apart from RA does she have other medical conditions?
    (weight, heart, condition of her joints)
    what are her coping skills like?
    Is she motivated to get better?
    After the methotrexate what other drugs has she been trying (apart from just steroids) (EG suphazelazine or Anti TNF?) (are she being described as having failed on treatments?)
    What's her relationship like with the rheumatologist? +GP?
    Has she tried any intensive physio - rehabilitation yet?
    Is she having hydrotherapy
    Does she have supportive friends/family locally?

    Hope you can ring us

  • kathmcg
    kathmcg Member Posts: 4
    edited 30. Nov -1, 00:00
    Hi, thanks for the reply. I will try to ring next week.

    Mum is 74. She has no heart condition but is overweight (about 13 stone) though not as much as she was a few years back. She had a stroke 8 years ago and has post stroke pain in her left leg. But it's mainly the right knee which gives way now.

    Coping skills - she would say good, I think not so good. Though it's hard to know exactly how someone else feels, my gut feeling is that she doesn't handle pain very well. She wants to get better, but is not great at doing the things she should to help herself. Eg she's not very disciplined at doing the exercises the physios give her. But as she always had a very busy and active social life she does want to get back to as much as possible.

    Other drugs - don't know what else she's tried but I will find out. The methotrexate caused hair loss which distressed her which is why she stopped it. Since then something else has caused hair loss so maybe she could go back on the methotrxate when she next sees her RA specialist.

    Good relationship with doctors. No hydrotherapy. She's had physio daily since she's bene in hospital. They think she's not improving and there would be no point trying her at a rehab unit.

    Good supportive friends locally. I am nearest family and am 45 minute away.

    What I would like to know is whether this does sound like it's all down to the RA. I'm just bemused by the speed with which her mobility declined over the last couple of months.
  • kathmcg
    kathmcg Member Posts: 4
    edited 30. Nov -1, 00:00
    Mum's taking Leflunomide at the moment. She's had some other anti-inflammatory in the past but can't remember which but had to stop it as it gave her stomach problems.
  • helpline_team
    helpline_team Posts: 3,024
    edited 30. Nov -1, 00:00
    It does sound as if the doctors have done all the right investigations and put all these symptoms down to your mother's RA.
    Being ill and in hospital can make people feel low in mood & she may feel more inclined to help herself get back to normal once she is home. You could ask for the community physiotherapy service to continue her exercise programme at home and ask her carers and friends to encourage her to mobilise.
    I'm sure she appreciates all you've done for her and don't forget to get support for yourself in this difficult situation.
    Best wishes