Late last year, I visited the Professor and gave her my list of how I was, she was thrilled skinny with my blood results and annouced, I was all normal again, which I have to say I am much improved, due in no small measure to her administrations of various chemicals & toxins. My back ache was due to my weight gain (the evil prednesilone) and the professor was again so pleased that I was going to address that soon!
I mentioned to her that I was still suffering from awful fatigue, so she said drop down to 15 mg of meth, so thinking nothing of it I did. Now looking back, I realise that this small decrease started off a Christmas of aches and pains, and creaks and of course the lethal wrist bone swell! Anyway many €s later I am back on my 20mg meth and miraculously aching has subsided and feet are semi ok! I won't be decreasing that again. Another thing I mentioned (not to worry anyone but RA has been linked to an increased chance of heart disease) was heart disease, not to worry says she, you are being monitored! Like I was some specimen! She does think I get too much info off internet.
Did you ever notice, that you can show a Consultant Rheumatologist something like a lump of inflammation on your hand or wrist/ankle/ finger and they look curiously at it, prod it, and give you the impression that they have never seen anything like it before? Why is this? Like gynaecologists..... surely they have seen every conceivable lump & bump associated with RA ?? I had a radiologist tell me that my inflammation was a ganglion!! I said it is not !!and sure enough he did a quick ultrasound and said 'you are right obviously you know your own body' Good Lord, where do these people come from!
Sorry for waffling, but its great to vent! My OH has said on occasion 'If I hear Rheum arth again!'
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Gina_K
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Gina. This is very useful to know. It does seem like they are just trying testing stuff out really and in the meantime it is us who suffer the probs, and then they can say "Ah yes so that was the cause".?? And about the lumps and bumps, my consultant was exactly the same. I showed him my lumpy knee and said "that;s your bone" Duh I don't think so ... the fact that it is all spongy and on the side of my knee, which gets bigger every week. I am just waiting to see the nurse next week to show her how much it has grown and be interesting what she says! He also told me that the lump at the base of my thumb joint was "classic osteoarthritis".
Very interesting to read the comments on Methotrexate. I now take six once a week and really hate having to swallow all those tablets on top of my other meds. I am also on sulphasalazine 4 tablets daily. Has anyone else using Methotrexate had a prob with their bowels. An embarrassing side effect I seem to suffer since being put onto Methotrexate is very loose motion. I mentioned this to my Consultant who said it had nothing to do with the methotrexate. I also suffer from extreme fatigue on the plus side it has helped with the pain and swelling.
I'm not an expert but a lot of people seem to have trouble taking the meth in tablet form (each tab is 2.5mg)Apparently, its easy enough to get it in injection form and this by passes your digestive system. Try taking the meth on a Friday evening if you are working and at least you can have a lie on Saturday. The folic acid should be taken three days before the meth to lessen side effects. My Consultant did'nt explain this to me and I was taking the folic acid with the meth! (which apparently is no help). The problem with bowels could be the sulphasalazine (plaquinil in Ireland). This is given to sort of confuse the immune system along with the meth. I am also on a bi weekly injection of Humira (adimulab) which I have found the best yet. I know all these meds are scary, but remember years ago you just became disabled so hopefully we won't end up so bad! have to sign off now because my hand is aching!!! Good luck.
Oh Gina, I have not had such a laugh for a long time, your comments regarding consultants looking at RA joints like they have never seen them before, followed by quite tough prods (just to make sure they do hurt) you are so right, I have had RA for 20 years, and they still do it, even at the Nuffleld in Oxford!
Lorrayne, my fabulous sister Yvonne, lives in The Dreaming Spires City, many fine hour have we spent in the Radcliff. Is the Nuffield a center for Rheum, I am positive she has it but just does,nt have the positive factor, her docs don't seem to be great! Small World!!!!
Hi Gina, I was diagnosed Sero-negative RA I have been reading other peoples bloggs, and there seem to be a lot of us that do not have positive factor. It means nothing, apparently, you can have positive RA factor and never get RA. (Consultant told me that) I lived in Warwick then, was lucky I suppose, I was so ill for three months after daughter was born, fed up with people telling my I had the baby blues!, went to my GP, older guy, knew what he thought it was in a nano second and why hadn't I been to see him sooner, telephoned who he said was top RA Cons and had me an appoint three hours later. I moved to Uffington, Nr Wantage 13 years ago, 25 miles from Radcliffe and Nuffield, my GP here sent me to Nuffield as she said it was a centre of excellence, also if I was ill I would go to JR Hospital, so they would have all my notes locally, and the Nuffield Orthopeadic Hospital is indeed world renowed. They do have specialist RA bit, top consultants specialising in difference fields of Arthritis. They are very good, you just have to be careful sometimes a junior may call your name so you have to pay attention that they know as much as you do! I have seen some great ones and some not so great, they just get the tone! and "the look" as my daughter puts it! Your sister needs to be positive with her GP and ask to be referred. Otherwise telephone outpatients and ask to speak with Maureen Cox, and explain situation, she is a Clinical Rheumy Nurse, she is brilliant, listens, understands and sorts it if she can. Although I do think your sister needs that initial referral by GP. Tell her to lay it on thick, really thick and ask for a referral as it can be linked in families although not proven, it may make her GP pay more attention. Good Luck
Thanks for that lorrayne, its all very interesting, she is coming to Dublin for visit next Tues, so will pass on that info, she is not very assertive. She will think it v funny me finding out info on Oxford Med. Is'nt the internet great. I won't be on line for a while as my hubby is saying that I am making my hands worse! No really my MRI has just shown significant changes, and I've to go for image guided injection in a week or so, its just one long Merry-go-round of GPs, Consultants, podiatrists, radiologists!!!!!
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First dose of Humira yesterday, now a question
Lots of questions from a newby
