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A few answers maybe?

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michelle1958
michelle1958

I am so grateful to find a forum that I can post to and ask some of the questions I have about RA.  I was diagnosed with RA a couple of years ago and about six months ago my Rhumatologist called me and said my RA was very active and wanted me to come in and get started on some medication.  I had been taking Methotrexate so she added Humeria, about 3 weeks ago I developed a cough and wheezing so she took me off the Methotrexate so now I am just taking the Humeria and I do not find that it is working very well.  I still have that cough and I am still wheezing, have been for x-ray and catscan nothing so now I am going for a cardio workup this next week...I am so very tired of all the symptoms that come along with RA.  My joints and my muscles hurt daily, my hands shake and I had a hard time holding on to things..I have sored in my mouth...Want me to go on?  Oh one more thing  I have Chronic Sleep Disorder.  I am staying very careful not to get sick...All of this to know if any of you have any of the symptoms I have discribed...sorry I am new hee just looking for answers. Michelle

0 likes, 8 replies

8 Replies

  • lyn1951
    lyn1951 michelle1958

    Posted

    Michelle - Oh I feel for you.

    I too have some form of RA, negative when tested, also negative for psoratic arthritis, but rheumo tells me there is no question I have active arthritis.

    I have been on MTX for years now and never had any real problems with it even through Double Hip replacement.

    The only problem I have had is not taking up the MTX, across stomach barrier, so now inject myself 35mg once a week.

    I too have had a patch of mouth ulcers, over Xmas, maybe I did not eat enough greens or somthing, so I got myself onto some chewable mutli vitamins, not too horrible, and ulcers have seemed to settle.

    I also take 6000mg, 6 x 1000mg of odourless fish oil capsules a day, they are huge, but you do get used to swallowing them, I find the only way I can tolerate them is with food, as recommended by Rheumo.

    When i don;t take them, as I did over holidays, forget the bottle, and felt the differnce, everything was just a little more achey and sore, but i already knew that, and kicked myself when i realised I had forgotten my bottle of oil capusles.

  • lyn1951
    lyn1951 michelle1958

    Posted

    Chronic sleep disorder, par for the course I think, also have hand swelling, and holding onto things, you should have seen me at the supermarket last week, a disaster area, dropped the toilet rolls, then the pasta, husband at that point got very impatient, and said tell me what you want, and i will pick it off the shelf, which he did.
    • michelle1958
      michelle1958 lyn1951

      Posted

      Thank you Lyn for all your wonderful information.  Again I can not say how much it means to me to know all the things I am experiencing are not just in my head.  Do you find the fish oil helps with ulcers in your mouth?  I think one of  the things at this point or should I say this week is the fingers, hands and ankles.  Again thanks.  Hope we can chat some more!
    • lyn1951
      lyn1951 michelle1958

      Posted

      Michelle - No I don't think the fish oil helps with ulcers.

      But the multi vitamins do, just make sure you buy a good quality multi from the chemist, doesn't have to be the most expensive on the shelf.

      I think thats about the best we can do to make sure we are not buying complete junk.

      Another little hint, I have worked out over the years, that mouth ulcers are usually a sign of lack of B vitamins, but not always.

      Do you always take your Folic Acid the day after your methotrextrate thats your source to replace some of the B Group Vitamins that the MTX destroys.

  • Rowbirdie
    Rowbirdie michelle1958

    Posted

    Hi

    the process of finding what works is so hard isn't it?

    But if I were you I tell your rheumy you are not benefitting from the Humira, quite aside from the cough and breathlessness she is investigating. 

    There are other biologics out there that can be tried.

     

  • frances85589
    frances85589 michelle1958

    Posted

    Yes I gave had them n still get them but some weeks are better than others. I was on methotrexate and had cough n too was sent for xray n OK but was taken off them when affected my liver.was promised it by injection as it is better but got moved onto another DMARD n then biologics.for the sleep disorder I take amytripyline. Take one last thing at night n it zonks you out.

    I agree with 3Rowbirdie to ask your consultant to try something else.think they leave you on biologics for 12 wks n if no improvement they try you on another

    • michelle1958
      michelle1958 frances85589

      Posted

      Thank you for your reply. I am kind of new at this and was wondering if you could tell me what a DMARD is?   I did not realize you could takle the methotrexate by injection.  Maybe I need to talk to her about that.  I don't drive so have to depend on someone take me and bring me home. so hard at times.  Okay anyway thanks again for your reply. Look forward to hearing more.
  • lyn1951
    lyn1951 michelle1958

    Posted

    DMARD - disease modifing anti-rheumatic drugs.

    There are heaps of them, and I have been on most of them at one time or other.

    Methrotrextrate works the best for me, keeps my disease under some control, but not as much as the spicalist would like. 

    So she has also put me on Leflunomide started me on 10mg, worked well, but again not enough for her satisfaction, so upped me to 20mg leflunomide, worked wonders, but for the blood pressure that nearly did me in.

    I had to come off it urgently.

    About a year ago put me back on 10mg of leflunomide, with the MTX, as well, my arthiritis is under control, sort of, I still have bad days.

    Rheumo specialist has told me she doesn't want to try me on biologicals, as I have had cancer, many years ago now, but still not recommended after cancer, also I came back postive TB antibodies, and that also is a NO NO for biologicals.

    Its just a matter of working out what works for you, and like me you may have to go through the chemists shop of tablets before you find one or a combination that works.

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