Update on me!

Update on me!

Went to appt yesterday and got a registrar, never happy seeing them. Anyway they are going to try me on humira which they hope to have approved in about 6 weeks. I hope it has the same non side effects that enbrel had as I hate having to try and work through side effects.

I asked about what I can do for my hands as my fingers are starting to drift on my right hand and also my jaw has become very painful, which are new painful things. She just shrugged her shoulders and said nothing! OK right then. I ask about my parathyroid test results as my levels have been increasing over the past couple of years, she knew nothing but I pushed this one so now I am booked in for a scan to see if they have tumors on them. Just have to wait to get the appt. She wants me back on steroids but I am loathe as they pack on so much weight. If I get desperate I might take them for a few days as the costochronditis is getting very painful and I am finding it hard to breathe. So I guess now I go back to GP ask about what I can do for my hands and jaw and pay for it all, if I can afford it.

8 Replies

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  • Glad about the Humira at least - the rest sounds lousy for you X

  • Yeah I am going to talk to GP. I did think that rheumatology were supposed to follow through on these things but apparently not. Wish I had seen my rheumy he is so good.

  • Hope you have better results than I have had enbrel gave me respiratory probs so then I was put on humira side effects are horrible makes me feel I am just trying them out I.e.Guinea pig

  • I didn't have side effects on enbrel it just stopped working, they think I have developed anti bodies to it. I am hoping I don;t get side effects from Humira either. Sounds like you have had a hard time with biologics. I have had that with DMARDS and can't take any but plaquenil. I hope you find something that will work for you that won;t give you such bad side effects

  • Hi thanx for kind words I have had 2 months pain free in 8 yes and that was on enbrel I am now convinced the only thing that gives some mild relieve is the mtx rheumy don't always listen so as a last resort going to give the meds a miss and see what happens

  • I can't take mtx it made me psychotic and damaged my liver. but it works very well for a lot of people. Please don't go off your meds without some medical advice as it could not be good for you. I hope you can find something that works for you.

  • Thank you I will take advice first

  • I know it is frustrating, I am frustrated that the enbrel stopped working and now I go on the merry go round again, but it is all they can do it is a trial and error to see what works and what suits us for our particular reactions etc. I hope that you have some luck soon with something.

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