Telephone appointment

I'm fed up I want to feel my normal self again this stiffness lack of strength and tiredness are getting me Down

Well I may be coming off methroxate due to intolerance and being put on either suphathalazine or something that begins with L I didn't quite catch what was said as I had difficulty with their accent too.

No mention about the next appointment so now in limbo. Asked for my blood test results for my GP who has shared care. Not sure if I will be sent these as requested.

I await the promised call next Thursday

8 Replies

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  • leflunomide

    I think this is the one they spoke of

  • Oh well hope the next treatment works, mtx works for some and not for others mine didn't work with other dmards but it's working along side Bisomar (Benepali)

  • I know the feeling of wanting to feel normal again only too well!

    I had a little over two weeks of sulphasalazine, but got scared and came off them. My liver and kidney tests were OK, but I'm waiting to hear from my rheumatologist whether I should continue taking them or not.

    Can you get your blood test results online? We can sign up for that at our surgery. I don't really understand them, but I find them interesting, especially the ones that are "out of range" but which the GP says are fine.

  • No I get the blood tests on line

    I had the call back to double folic acid the day before and day after MXT. Otherwise to split the MXT dose. Before finishing this call I asked when is the next review. She had to look and then said a month. Pigs might fly if it's a month. Let's wait and see.

  • Hi there. I have now been on Leflunomide for 2 months after HCQ did nothing for me. I was feeling completely miserable and in pain most of the time. I was beginning to give up hope of ever being 'me' again. I know we are all different, my experience of the medication has been quite miraculous! I have more energy, less brain fog and only occasional low level pain. GOOD LUCK!

  • Keep pushing - you'll get there in the end but you may need to summon energy as it seems that quite often things get forgotten unless you keep asking. Let's hope either Lefluonimide or Sulphasalazine work brilliantly for you.

  • Hi- are you taking mtx tablets? If so, could you ask to have mtx injections? For me that change has helped with the nausea etc. Also, I was told, rather than 60 something % getting to where it needs to do it's job more like 90 something % gets there- do as far as I can see it's a win, win situation! When was in tablets, I split them - some in the morning and some in the evening and always with food. Over time I reacted less to them.

  • I swapped over to injections 2 months ago

    I had a call back I was told to double folic acid day before and day after MXT and continue taking 5 mg the rest of week apart from day of MXT. If this doesn't work to split MXT dose to twice weekly

    I start from this week so fingers crossed

    Matilda

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