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second opinion

Posted , 2 users are following.

Dublin,_Ireland
Dublin,_Ireland

Hi all,

I had my appointment this afternoon with my local teaching hospital rheumatology dept....and guess who I saw :?: .

Only the rheumy I have being paying to see for the past 15 months :roll: :lol:. He was doing locum for the usual consultant :!:

Anyway, he was fine with me transferring, and actually suggested it himself as it gives me access to a specialist rheumatology nurse, blood tests & x-rays etc.

The upshot of my visit was that he decided that we had given the MTX a fair shot and it was not making any significant improvement to my symptoms, so the next step is an \"anti-TNF\" treatment.

I have to be tested for TB and have chest x-rays etc before it can be prescribed so had all that done today, and spent 40 minutes with clinical nurse specialist discussing which drug would suit best. They are all either weekly or alternate week injections, so it is a bit personal choice and a bit which is the most tried and tested. The nurse told me that most people in the clinic use \"Embrel\" and that it gives huge relief to the majority of them within 2-3 weeks, so have to do a bit of research and wait for test resullts before making a final decision.

I had knocked my left knee off a cupboard yesterday and dropped a carton of milk on my right foot this morning so, coupled with my usual steroid marks I was displaying a fantastic array of bruises today :wink:

The rheumy just looked at my multi-coloured skin and said that the sooner I was off steroids the better :shock: .

I hardly even notice the bruising anymore, unless very obvious.....all I want is some hands and knees that work with a degree of normality 8)

Hope everyone else is keeeping well and you are having better weather than us...it poured rain here this evening.

Love to all,

Pauline.

0 likes, 9 replies

9 Replies

  • Mrs_G
    Mrs_G

    Posted

    Hi Pauline

    Sorry the Mtxate didnt work for you I have no knowledge whatsoever about the treatment you are having so Im no help there !! Just to say I really hope something works for you soon

    I have gone back to 5 had got to 2 but at 5 Im OK Saw my Dr yesterday and we agree d that as my bloods werent any better I would stick there for a couple of months as I had been yoyoing for a while

    Best wishes

    Rosemary

  • Lizzie_Ellen
    Lizzie_Ellen

    Posted

    I've just typed a long reply to your posts Pam and Rosemary and it vanished into the ether (can't possibly have been a mistake on my part :lol: !).

    So let's try again.

    So sorry you're having such a rough time Pauline but it does seem as though the Rheumy is taking notice and coming up with new ideas (I hope you asked him for a rebate on your private consultations!!). I do hope the new drugs work (whatever route you choose) and look forward to hearing better news soon. My suggestion? Sunshine on the Costa Blanca 8) Do you the world of good, amazing weather there just now.

    Mrs G (or should I say Rosemary - lovely name). I think I'm destined to stay on 5mgs for a long while. I felt so well when I came back from Spain I decided to start reducing again but my body's kicking up, even if I just do one .5mg reduction in a week. My bloods just say I'm as fit as a fiddle and there's nothing wrong with me, nothing hurts (I wish). Patience is a virtue isn't it :D

    Take care everyone, hope this doesn't go into orbit like the other one :ufo:

    Lizzie xxx

    PS: Celebrating partner's 59th birthday today, how come he's so much younger than me, how unfair is that!!

  • EileenH
    EileenH

    Posted

    Hi Pauline - what a shame you have to set off on a journey to find the right RA drug for you. I think it is quite common though. The bruising is because you've been on such a high dose of pred since you got back I assume - I had a few days on the same sort of level and suddenly there were bruises along my bra-line :roll: and I'd never had any bruising at all before! Plus I suddenly developed hamster cheeks - within days, I was disgusted :cry: I've been on 15mg/day for the last few weeks - should have started to reduce but saw my optician whilst in the UK and he was of the opinion that staying there until I saw the rheumy here again was a good idea as there are possibly some changes on the back of my eye - very minor and vague so he isn't entirely certain. I've suspected there is a degree of GCA going on but I'd rather they didn't agree :wink:

    Got back here to RAIN - honestly, as if there hadn't been enough whilst I was in the UK :roll: I brought back an entire suitcase full of summer stuff, unworn. Used the winter jeans almost the entire time. Today, however, is summer 8)

    Ah well - c'est la vie...

    Lizzie Ellen - I had that problem a lot before they were working on the site - I always copy my post before pressing submit now, means all you have to do is paste it in again! (or in my case, block it, press control C, try submit, if it doesn't work, insert the cursor and press control V)

    Eileen

  • Lizzie_Ellen
    Lizzie_Ellen

    Posted

    Hi Eileen,

    I always do Ctrl C when I do a post having been caught out before, however, before I realized my post had gone AWOL I'd done some more 'work'. Forgetting I'd been on Amazon looking for a book for the 'birthday boy' I almost posted a long review on a book about Extramadura in Spain on this site - phew! :lol:

    Daft Lizzie (good name for a pop group?) xx

  • Nefret
    Nefret

    Posted

    Pauline, I know a little about the anti-TFN's/biologics although not from experience, but I researched them when it was thought I was 'morphing' into RA (that is still open to question, but whatever it is, the MTX has worked for me, it seems to have stopped it in it's tracks).

    I'm starting one of them next week for osteoporosis; it's fairly new and is classed as a biologic and it is 4 injections spread over 2 years. The first one will be done at the hospital, after that I am hoping to talk my doc into doing them at the surgery.

    Good luck with yours - from all I read, Enbrel is one of the top favourites.

    Nefret (aka Catie)

  • Dublin,_Ireland
    Dublin,_Ireland

    Posted

    Hi Nefret (Catie) & all,

    Thanks for that Catie and hope your new injections help the osteoporosis.

    Embrel is the drug that most people with RA seem to try first and the nurse told me that it can make a huge difference to symptoms fairly soon after starting. A friend of mine takes Humira for Chrohn's disease and it has worked very well in controlling her condition.

    The bottom line is that I really have to give one of them a shot as the MTX didn't help and if I don't get the inflammation and swelling in my fingers under control the damage could become permanent.

    Rosemary...I agree, its a beautiful name, sorry you have had to go up on the steroids again, but we all know what a yo-yo relationship it is :roll: :wink:

    Lizzie-Ellen..we are off to Spain on 30th aug to finalize purchase and weather is lovely there at present so hope we will get lots of sun and heat 8)

    Hope everyone is having a good & pain free day,

    Love to all,

    Pauline.

  • Mrs_G
    Mrs_G

    Posted

    Hi all

    Glad you are off to Spain soon Pauline We have a busy time coming up we are going to the Glen Miller festival in Bedford over the bank holiday Tiring I think !! Then we are of to Rhodes for 10 days on the 8th Sept It was very hot there same time last year and we had a relly good time only problem is flying form Gatwick and longer flight and they always seem to have delays !!

    You and I seem to follow a pattern Lizzie !! I have really had enough of all this going up and down I think it had taken me about 10 months to get from 5 to 2 or at least 8 months so i just want to stick for a bit My Dr said some people do come off altogether than have little blips and have to take 5 for a while This didnt happen with my first bout so its new territory for me have a good birthday celebration

    Sorry to hear Eileen that things arent going so well for you still You seem to spend all your time giving us good advice and we dont help you !! When do you have some sort of review or check up ?? Hope you get some decent weather soon !!

    Best wishes

    Rosemary

  • EileenH
    EileenH

    Posted

    Sun now shining nicely! And to last until at least the weekend. See the rheumy here on Thursday. Friend of mine has just got back from Turkey and welcomed the rain and coolth in Germany! It was horrendously hot - David also had 40C and 90% humidity on the USA - plus the usual freezing air-con in the lecture rooms which couldn't be altered the first day as it was Sunday and noone was around. The hotel air-con was adjustable at least so they could redress the hypothermia :roll: :snowman:

    Eileen

  • Dublin,_Ireland
    Dublin,_Ireland

    Posted

    Hi all,

    Eileen.....good luck for tomorrow with your rheumy appointment. Hope all goes well for you and they don't find any trace of GCA.

    I had my Mantoux test checked this evening and thankfully negative 8) .I have to do another blood test next Monday to be 100% sure of no dormant TB in the body and if that is OK then I can start on the anti-TNF therapy. I am very impressed with my public health system so far....a nurse will come to my house to give the first injection and check that I know how to do it properly (Have only spent the last 31 years giving injections :wink: ), and the drug company deliver a sharps box to me and colllect it when full......all for no charge 8) .

    The rheumatology nurse specialist is just lovely and so easy to talk to that I feel I have known for years rather than just days......consultants could learn a lot from her :roll: :wink: .

    She suggested that I take some solpadeine with my other meds to try and get a bit of pain relief...none of the docs suggested it, as they felt the cocktail I was on should do the trick :shock:

    I stopped in my local garage on the way home to see if they sold it.....lovely ,very cute ,Lithuanian guy said \"don't have it but have very good Vodka..works better\" :lol: 8)

    Much as I was tempted, I stopped at the chemist instead, so will see if the solpadeine works.

    Love to all,

    Pauline.

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