Starting sulpha

Well it's official. My body, or more specifically, my liver, is unable to tolerate more than 15mgs MTX. I got a letter from the hospital yesterday saying not to increase the dose back to 20mgs, and to start sulpha because the disease is still active. This is all the result of a telephone on conversation between my GP and rheumy doctor. So it is the three DMARD cocktail for me and I feel a bit scared! More drugs, more chemicals.

My husband says I should be grateful that all these doctors have taken my health so seriously and that I am well looked after. But I still feel a bit like the decision has been made behind my back and I have had no input.

I think I will phone my GP tomorrow for a chat, I need to get the prescription anyway.

Carole

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  • We are all a little bit ignorant of the effects the drugs have on us. I'm not worried about the effects until it starts to affect me. I have felt as long as it was tamping down the ra then that was ok. I found out to my cost with mtx,i have been suffering with light sensitivity and breathlesness as well. Now of mtx until at least after my op and then we will have to look at it again.

    Sylvi. xx

  • Hi Carole - I'm glad someone else phones their GP for a chat. When my liver got a bit raised at the start of moving up doses I tried to push to get back up because the pain was getting me down and I felt the MTX was all I had to slow it down (still is currently). A different GP told me it was still raised and when I expressed impatience she said "you can't be more impatient than me so I understand how you feel - but you only get one liver and you really don't want to damage that on top of having RA do you?" - not much I could answer to that really was there?

    I feel a little like my GP's stalker at present having written him a letter last week explaining why I should be taken seriously re side -effects. But I've just moved up to 17.5 of MTX (had a choice of staying at 15mgs and adding in Sulpha which I've already tried and hated) and he said I must go up to 20mgs but slowly - having spoken to my rheumy about this himself.

    I don't get to see or speak to my rheumy one to one but my GP does - it's very frustrating? So although I understand where you are coming from about being in control of medications and discussing options - my disease is still active with a ESR of 50+ and I'm only slowly trying to go up on one DMARD. So I think your OH has a point that you are lucky to be being monitored so closely by your health team at least. I seem to be the only one to be making any real input into my health management and that's a lot more tiring and demoralising than being looked after well don't you think?! TTx

  • Yes, Tilda you are right, I am lucky that it s all taken so seriously. I have been feeling quite well up untill today. I think I got into that delusional state of thinking I haven't really got RA, so why bother? Today, however, I feel achy, tired and I know I have still got it. I do need the drugs and I will get the prescription.

    Like you, I have a busy week ahead. Travelling to London for my work three times which makes for long, long days. I won't have time to see my GP in person until Friday and I need to get my blood results as well as the prescription for Sulpha before then, so I will ring him for a chat about it all. He is very matter of fact but has a wry sense of humour too and helps me keep it all in perspective.

    I have followed your blogs on here and it does seem vey difficult for you to get any advice other than from your GP. I hope you succeed in reducing your ESR and the MTX controls it for you without any side effects. I hope you enjoy your trip down south with your choir.

    Carole

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