nobbly bits

annmariedalziel
annmariedalziel Member Posts: 7
edited 29. Jun 2010, 04:22 in Living with Arthritis archive
Hi
My husband has had RA since 2004,probably before then,and keeps fairly well.He is on 15mg Methotrexate once a week,but only takes 12.5 as he hates taking it.The side effects are not good,metallic taste,nausea and tiredness. He has ocassional flare ups which maybe linked to him missing doses!!! and is very unwell,for 2/ 4 days.
I suppose this is part and parcel of his condition.He sees a nurse for the blood teats but does not seem to be getting any follow up,or support,or even any information about if he is getting worse.There have been some significant chnges to hios bones,Knobbly bits,but also the beginning of curvature in feet.I am wondering how he goes about getting a review of his treatment to see if it is helpng??He is very positive,unless unwell and I know there is a depressive element there when he is not good.He goes to gym 5 days a week which really helps. I would appreciate any tips,info etc.Thanks

Comments

  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hi Annemarie
    I’m so sorry that your husband is unwell and sorry that he has disappeared from the hospital radar - unfortunately this does not seem to be unusual but a disease like RA needs regular monitoring to try to prevent joint damage, so I think he does need to get "back into the system" asap.
    Although Metho is one of the standard RA drugs, if your husband is unable to cope with the Methotrexate side effects (as I was) there are lot of other disease modifying drugs out there, so he may be struggling on with the Metho unneccessarily. If he is also starting to see signs of joint damage he really does need to see the rheumatologist asap, either by asking the GP to refer him back to the rheumatology clinic or by phoning the secretary of the consultant he saw previously to request a follow up.

    Please reassure your husband that he is not alone in struggling to cope with Metho side-effects. If you look back through the Living with Arthritis forum posts you will see lots about Methotrexate.
    I too was unable to cope with the side effects and, like your husband starting missing/reducing doses before giving up after a year and a half. It was a bit of a jugging act after that, trying to find a combination of drugs to keep things under control and although none of them worked as well for me as the Metho, most (although not all) of them had few side effects , so, for me it was a good trade-off for a few years.
    Hope your husband is able to get an appointment sooner rather than later – and please do keep posting for further advice if needed.
    Tilly x
  • frogmorton
    frogmorton Member Posts: 28,046
    edited 30. Nov -1, 00:00
    Hi
    Sorry your hubby's condition seems to be worsening.

    I think I agree with Tilly he needs to be referred back to teh rheumatologist (via Gp if needs be) to be reveiewed.

    I hope you can encourage him to go back.

    Love

    Toni xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    That seems like a smart move to me, too. RA is ongoing and degenerative, like all these conditions, so really he should be seen by his rheumatologist again. Get a referral from the GP, then hopefully you'll get an appointment before Xmas! (They don't rush ehtese things!) I wish him, and you, well. Dreamdaisy
  • annmariedalziel
    annmariedalziel Member Posts: 7
    edited 30. Nov -1, 00:00
    Thanks for your reply...he has phoned secretary 2 weeks ago but not heard anything yet,surprise surprise.His flare up has settled and he back to work,,,and the gym!!We go a cruise in August which will be soooo relaxing,for both of us.Life goes on.
    Take care
  • speedalong
    speedalong Member Posts: 3,272
    edited 30. Nov -1, 00:00
    Hi Annemarie,

    I don't have anything to add, just wanted to welcome you to the forum. I hope your husband gets a rheumy appointment sharpish and they are able to review his situation and offer some help.

    Speedy
  • kevlar
    kevlar Member Posts: 41
    edited 30. Nov -1, 00:00
    Hi Anne Marie,
    your other half (OH) sounds like a fighter, he's not going to take it laying down, good for him.

    I can only agree with the other replies here, the poor fella needs professional help, he shouldn't have to suffer so much with the MTX or anything else for that matter.

    Keep pestering for an appointment. Be patient (you will probably need to be!) and polite by all means, but don't wait for someone to "get back to you". Keep reminding them you are waiting!

    Best of luck to you, and OH.
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hi Annmarie
    Just to say I really agree with Kevlar - he will probably really need to keep pushing for an appointment.
    If the Rheumatology Dept has a helpline or specialist Rheumatology nurses he could try contacting them - that might be another way in.
    Good luck - and enjoy your cruise!
    Tilly x
  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -1, 00:00
    Hi, It must be very frustrating and worrying for both of you. I don't have RA, so far the tests have shown oa, so I only know what I've read others say about the medication. Also, I do know that doctors have a choice about which medication to prescribe and if one doesn't work for you another may. Thats just my experience, as I'm not a medic.

    Would your husband go to see the doctor about this? If the GP does'nt know theirs a problem, he can't help. I know, some men are funny about visiting the docs. My husband is diabetic, but he hates having to see the doctor, thinks its a weakness or something! :roll: I know its often hard to know the best way of convincing my husband, whether to leave well alone or keep reminding him, till he goes to shut me up! :roll:

    Lots of love Sue

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