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TippyTay68TippyTay68 Posts: 3
Hi everyone. Hope you're all safe and sound during these worrying times. I'm female and I have had RA for 19 years.

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  • YvonneHYvonneH Posts: 156 admin

    Hi TippyTay68,

    Great t meet you, we are all in interesting times aren't we? It's great you are here posting, do join in wherever you feel you can help or feel comfortable.

    You've had RA for 19 years, how well controlled is it, have you managed to get on with life pretty much as before or have you made adaptations to your plans. It's great to share our stories which can be inspiring for our members new to the whole arthritis 'thing'

    Look forward to chatting soon

    Take care

    Yvonne x

  • dreamdaisydreamdaisy Posts: 31,214

    Hello, I have PsA, OA and fibromyalgia. I began back in 1997 so have a pretty good handle on it for most of the time. I inject meth and humira for the psoriatic arthritis and take pain releif for the OA. I like a rest too!

    I know these are 'interesting' times but by nature I am not a worrier and am not unduly perturbed. I've stayed within the confines of my house for a few weeks now thanks to being ill so a few weeks/months more is manageable. Anything that comes in is thoroughly disinfected (including The Spouse) but that is my usual routine so no difference there. I hope you find the forum to be of interest, we all get it because we've all got it. DD

    What a day. Not much happened and then I was tired.
  • TippyTay68TippyTay68 Posts: 3
    Hi YvonneH and Dreamdaisy. Thank you for the kind welcome, means alot.
    I have RA and *sort of Lupus*. Sort of in that my Rheumy Specialist says I have characteristics of Lupus. I'm confused by that as I thought you either had antibodies for something or you didn't and I haven't as far as I know. Anyway basically my RA is attacking my insides now, (organs, blood vessels, nerves, soft tissue and muscles) aswell as joints. I only had it in my joints originally. The RA in my joints at one point appeared to go into remission and I thought, 'yay I'm cured'. But 12 months ago my body obviously thought otherwise and that's when the internal stuff started and shortly after that my joints started being affected again. So I've got it inside and out now. Been put on a drug called Azathioprine that takes 6 weeks to start working and at week 7 just when it had started to work a little bit I had to stop taking it because my Liver enzymes ALT was at 480 instead of the normal numbers of between 15-35. So was told to stop taking it immediately. Have to wait 2 weeks then blood test to see if liver ALT has gone back down and decide from there whether to stop or restart the drug. I was originally on Methotrexate and Enbrel injections, then they changed it to Benipali last year but I had a bad reaction to it for some reason and that's when the Lupus thing started. Weird really because i was on the Enbrel for 10 years with no problems whatsoever but it all went wrong when they changed it to Benipali which is supposed to be the same drug basically..
    I'm glad I've been taken off the Azathioprine this past 2 weeks as I was really worried because it shuts down your immune system and so you can't fight infections and i was afraid of what might happen if i got the Corona Virus and that i wouldn't be able to fight it. I'm thinking of asking them to let me stay off it untill this Virus thing has blown over. Obviously it will also depend on my liver test results. Anyway I've gone on a bit much, sorry about that.
    Take care everyone.
  • dreamdaisydreamdaisy Posts: 31,214
    edited March 27

    You haven't gone on too much at all, the more info we have the better we can answer.

    Last year I was switched (without my knowledge or consent, my hospital forgot to tell me) from humira to imraldi and it did not go well: supposedly the same drug yes, but the imraldi had more excipients than humira. I gave it a good go but ended up so poorly I had to ring my Helpline. My rheumatologist immediately switched me back to the good stuff and life improved.

    I don't think any auto-immune stuff obeys the shoulds and should nots, it does what it wants, how it wants, when and where it wants, leaving the docs and patients trailing in its wake, always working reactively. The controlling meds are as proactive as it gets.

    All the meds suppress our immune systems which is why none of what is going at the moment is causing me any great hardship. How I normally live has merely been magnified and widened to include everyone, I am doing what I have been told to do by seeing no-one and going nowhere. I am fortunate in that my husband is going food shopping and collecting precriptions and, bless him, decontaminating anything that is brought in to the house, including himself. Much of my childhood in the 1960s was spent isolated from others due to poor health and, being an only child, I soon developed self-reliance and learned how to keep myself entertained. That is much easier to do now with multi-channel TV, the internet and digital radio!

    Right, I am half-way through changing the bed, I had better get back to it. Then I might get in it. DD

    What a day. Not much happened and then I was tired.
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