Rheumatology ... ... DIY?

The call came!! I could hardly believe it... my rheumatologist on the other end of my phone on a Monday afternoon. Do you suppose she’d got wind of the fact I might be considering a second opinion?

Anyway up, she was ringing to update me on two main issues but had waited to see if the increase in prednisolone that I started last Thursday, had helped calm things down. Well thankfully, indeed, yes it has, I was pleased to be able to report. I decided I wasn’t going to pussy foot about nor bother with the telephone voice (why do we do that?!) so what she got was me, a not particularly happy bunny in what has become a stressful unnecessarily elongated situation.

I can’t have yttrium synovectomy on my knees because they no longer do the procedure at Wrightington. Instead they do something called Osmic acid (analogous to sulphuric acid, eek , remember that from chemistry and not sure I want that floating round my knee caps!!) ... sounds very 22nd Century! However no-one knows with any certainty how successful, or not, this might be for me given the amount of joint damage I already have. Also, because of its very nature it ‘may’ impact on future knee replacement. In view of this Wrightington have suggested I go for the knee replacement now (now? As in today? Tomorrow?! More eek! ) rather than fiddle with something that may not have lasting effect etc.. Hmm....

However, the rheumatologist also has to consider treatment options and how we go about this if surgery is to be taken into account with the stopping and starting of meds. Clearly the Leflunomide isn’t doing the business so I can come off that if I wish. She could put me on Rituximab but if I am still sero-negative it may not be as effective as it could otherwise be. If it turns out I’m now ‘positive’ it could be a different story! Have to wait a couple of weeks for results. Already had two anti-tnfs so can’t go further down that road and also if I come off Enbrel to ‘try’ Rituximab I can’t then go back on it at a future date. As the Enbrel does work, just not on its own, seems a shame to give it up. I could apparently keep the steroids at 7.5mg with the Enbrel (was on 3mg for last four years) and this may keep things controlled. Do I want to be on this amount of steroid for the rest of my days (which I’m hoping to have a few of yet!!)? Previous consultant said the dosage must be less than 5mg for long term use. Then there’s Azathioprine, Ciclosporine and Methotrexate. We don’t seem to be able to find out whether I have ever had the first two so that’s useful isn’t it?! Think I’ve had the first and probably not the second! She might be prepared to try a ‘baby’ dose of Mtx to see how it goes. What on earth is a ‘baby’ dose? I’ll assume she means, low dose, 7.5mg! I also need to get off the ruddy Naproxen, currently at a gram a day!! GP not happy with that at all!!

So, there we go in the ongoing saga of a slightly less cross than I was, slightly less upset than I was but still hurting rheumatology patient! Think I will cast it all aside until I get the anti-ccp results. I’m back at the hospital in the morning for yet more blood letting ... one sample went in the wrong coloured tube!!! Would you ‘Adam and Eve’ it?

Lyn x

PS well you have to laugh otherwise you would just cry and cry and cry ... ... .... .... ..... ......

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Hi Lyn, yes you do have to laugh or you most certainly would cry, then again it sometimes helps but I think were a little past that!

You seem to have such a lot going on with your meds at the moment, we seem to get sorted then suddenly things get a little shaky and were upside down again where our medication is concerned.

I'm on Rituximab went onto it after Humira, have been on it for about 3yrs now and doing really well.

Not totally under control, then again I think it may be a little late for us to get everything under control but you never know.

Hope you get sorted soon

take care

mand xx

[Gina_K]

Gentle hugs to you Lynn, hope you get some relief soon, which you will I am also very wary of pred but sometimes there is no alternative until you find an effective combination of drug therapy. x

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lyn..... I would be happytake up to 7.5MG prednisolone long term! it is in my opinion the last safe dose......for long term use.... Im currently on 20mg.. flare... my dr had suggested 15MG today you got to be joking after last nights lack of sleep and joint pain, in doing at least another week on 20MG.. my body.. my steroids... didnt do three years pharm study to be a little ba ba sheep, pleased to see you are capable of speaking your mind like the rest of us,,,. with every right !!you have years of experience of this disease..., if it helps I have a colleague with lupus takes 7.5MG long term. (does a diff job to mine.. responsible for stock levels of controlled drugs, thats your ocycodone. morphine, duragesic, from what I can see lupus is worse than RA ).. she only works 16 hours..., I issue cds but her is a little niche job.... she had been working there sometime before getting ill, unlike me just 2 years... ( 7 years retail pharm before this). I know do 28.75HRS but off with a flare... aagh.. oh for decent treatment... my colleague has a dif rheum.. she now goes to london.... Lyn Demand what you need.. if this gold doesnt work for me only one injection so far..., going to ask to be trreated out of area..,

Ciclosporin and azathioprine v powerful drugs often used in anti rejection therapies for patients who have had transplants.....

you know that if you take prednisolone correctly with some bone protection how useful it can be you are one smart cookie.. You know so much and so many of your answers yourself///

Alison up the revolution... sheep free zone lots of love