Your support really helped!

Your support really helped!

I thought that it would be nice to let you know how I got on yesterday with the new rheumatologist, particularly for those of you who gave help and support when I asked your opinions on how to deal with the consultation. You will remember I was worried that she may think that I didn't need immediate help after the Rituximab hadn't worked.

She was lovely! A tiny little young lady who was sympathetic and very helpful. She told me that the Rituximab should have worked by now as I am seronegative, and that there was no point perservering with it and that she would move me on to another infusion called Tocilizumab. This is a monthly infusion, but I don't mind that if it works! Sadly my liver function is not what it should be so we have to wait a couple of weeks to see if the readings are coming down. I am going on holiday for a few days the weekend and she offered me another steroid injection to tide me over, even though I had had one just before Xmas. I jumped at that and this morning feel so much better with little pain. I might not have to wear my splints at Pilates today! She examined my hands, shoulders and knees very gently and said she could see the swelling and lack of mobility.

She has just this minute phoned me to say my LFT is worse! Oh dear it's just wait and see for that. I told her about my new grandson and my fears for not being able to hold him (I got a bit upset) and she was very reassuring.

So all in all a good consultation and your support and advice was really useful. So a huge thank you for taking the time to reassure me and being so kind.

Here's a pic of my new tiny grandson.

Tilstongal

12 Replies

oldestnewest
  • Your little grantson is lovely. That was a good appointment, it makes things so much better when you are listened to and that it is acted upon. I hope your new dmard starts to take effect and you get holding that beautiful wee boy very soon.

    Not sure what your lft is but hope that improves too.

  • Thank you Mads . Actually the liver result is sky high -it was 250 now about 150 ! They think it was antibiotic Flucloxacillin it has a repuutation for inflaming the liver -it sure did that! Be careful of it community.

    Tilstongal

  • I took that antibiotic too and it made my liver soar too only I thought it must be the small amount of booze i had drunk? So hopefully your liver will settle down again quite soon (livers seem to settle slowly but once down are fine in my experience) and the steroid will work its wonders, you'll be able to lift and cuddle your adorable grandson soon and have a lovely holiday. What a good rheumy you seem to have! Tilda x

  • Ah that's great news. Glad you had a good consultation. It make such a differnce a good

    appt.

    Nu new grand. Son is beautiful.

  • Tilda, thanks for the thoughts on the antibiotic, my GP actually said that I would have to be drinking bottles of booze a day to get a result like that -so I have stopped feeling guilty after the odd glass of wine. She said it had totally been caused by drugs. The Rheumatologist is a new one an almost seems too good to be true -she'll probably move on as many seem to from this area. I shall enjoy her whilst she is here.

    Watson3, thanks for your support. I had not realised before how much better I felt when I received the positive advice and support to my question last week. I have previously avoided what I call 'sickness groups' (I know!) preferring to get on with my life. But I realise now that if is a supportive an informative group as this one is on the whole, they can be very helpful.

    Thank to you all -have a painfree day!

    Tilstongal

  • Your grandson is an absolute treasure. X

  • Thank you jo100. He is my first and I love him to bits already!

    Tilstongal

  • Hi Tilstongal

    I'm glad to hear your appointment went well. We have an article on our website all about tocilizumab which I thought you might find helpful: nras.org.uk/about_rheumatoi...

    We've also got a case study written by a lady on tocilizumab if you wanted to read about someone else's experience: nras.org.uk/about_rheumatoi...

    Good luck with your new treatment.

    Kind regards

    Sarah Kate

    NRAS

  • Sarah,

    Thanks for those links they are useful. My liver results have to come down considerably before I can have the tocilizumab, so back to the waiting.

    Thank you again.

    Tilstongal

  • Hi there,

    I see your seonegative, I have had arthritis for 9yrs however my consultant seems to have changed his mind and it's now seonegative arthritis instead of rheumatoid. Can I ask what medication your taking as I have no info as my consultant is useless?

    Jene x

  • Hi Pinkjen, I am never sure of the difference between positive and negative as they are treated much the same. At the moment I take Methotrexate, folic acid ( and I think the follic acid is because methotrexate inhibits the absorption of vitamin D and it has to be administered daily -not as an anti nausea as others say, I take it every day apart from my methotrexate day) amitriptyline for pain, co codamol for pain, and am just moving on to an infusion called Tocilizumab next month. I had an infusion o Rituximab last year but it didn't work, and between October and Christmas was the worst it has ever been. It is held now by 2 steroid injections one before and one after Xmas -but we all know they don't last.

    i am not sure that this helps you much. I was always under the impression that neg and pos were the same things just with the pos you had a marker in you blood. I bet this site has some info about it somewhere.

    Sorry I can't be of more help to you.

    Tilstongal

  • Hi, you asked me about seronegative/seronpositive. I am not sure if this will help but its probably worth a look. nras.org.uk/about_rheumatoi...

    Regards,

    Tilstongal

You may also like...