Conflicting advice

Following on from my recent illness, my Rheumatologist believes that it could well have been a reaction to Sulphasalazine, which I had been taking for just over a week, but that I might possibly be penicillin allergic too. He did, however, feel confident that I should recommence the methotrexate injections, which I had been taking for some time now with no real issues.

My current concern is that my GP has told me that he is writing to the Rheumatologist, as his concern is that the methotrexate could be causing me more harm than good, given that I have other health problems which make me susceptible to infections, and the MTX makes me even more susceptible. Given that I am more likely to suffer from other health issues, and that the MTX makes me slower to heal, my GP feels that I should not be using MTX.

However, when I think back to before I started to use it, my shoulders were so bad that I would make an improvised sling from whatever I was wearing to immobilise them, and by the evening I was unable to make a drink, lift a cup or remove some clothing. Needless to say, I have concerns. My GP wants to see me again in a month, and I am due to see the Rheum. consultant at the end of January.

I wish I knew enough about it all to have a definite opinion, or the right answer, instead of having to rely on other professionals (who I know are restricted by matters such as cost).

Ally x

9 Replies

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  • Oh dear I didnt get on well with sulphasazaline either, most people however do and with mtx, If you think you are/ were ok with mtx fight to carry on. ?. I do see you have other health problems due to your profile which makes things more difficult, have you type 1 or type 2 diabetes?

  • Actually forgive me looked at your profile again.. im not concentrating well having a bad flare. you appear to have type 2 diabetes from your medication, Diabetes can make wounds more difficult to heal and other issues thats prob what your gp is referring to?

  • Yes, Summer, it is the diabetes issue as well :) I have a long history of leg ulcers which take ages to heal, and I'm sure my GP is considering this too.

  • It might be the way you put things but it does sound as if both doctors are actually having a good THINK about what is going on with you. And they are communicating. In addition you will have the opportunity to put your concerns to them in person before long & as the person who actually has the disease, takes the meds, your views are key. Just looking at all these factors, it doesn't look too bad to me, more like Rheumatology is not an exact science and there are 3 people trying to get to work it out. On the face of it, as long as cynical factors like cost don't get in the way too much it looks like quite a good care situation. And although you say you wish you knew more, your experiences should be what both doctors will consider carefully if they are as good as they sound.

    One thing I do wonder is whether issues early on with mtx mean much seeing as it often has so little impact in the early days. And I half think I've heard of symptoms getting worse before they get better when people start mtx?? Perhaps others will have a view. But given that you have other health issues that mtx might still make worse, have you thought about anti-tnfs? Perhaps this is an area you could researsch if you haven't already so that you'll be well-informed if the doctors suggest it.

  • Like Woolly I think it does sound helpful that the docs are trying to communicate with each other. But does your GP appreciate how bad RA can get without treatment I wonder? As some don't seem to have much experience of it. The big question that your docs need to answer to me is what is the best RA treatment for you given your other health problems? Just saying you should come off one drug isn't really helpful, as all of them have side effects and interactions so anti-tnfs could be no better in terms of infections and so on. You do need to get them to explain what the best approach is for you, to keep both RA and diabetes in check. Hope you get some answers. Polly

  • As Woolly and Helix say, it's great that there is communication between the doctors, and I feel happier now that I've actually met the consultant, as for almost 2 years I saw his registrars, rheumy nurse, and rheumy pharmacist who monitored the medication.

    I rather stupidly thought that they might just stop the mtx without replacing it with anything, and all your comments have made me realise that they are hardly likely to do this! It was as if panic set in and I would have to go back to the pain I had before - Silly me!

    By the time I see them next month, they should hopefully have communicated with each other, and I can hear what they have to suggest

    Ally x

  • Hi Ally

    gosh you must have been worried as so far its not like you to be less confident in your treatments and in your self, I feel. I am so glad that the Doctors are trying to help and get the treatments right and its so worrying when you are waiting isnt it. I have been waiting on getting funding for my Humira as i recently moved hospitals and despite phone calls, gps, rheumy nurses I still heard nothing. Then i called again and they said Oh that was passed ages ago!!!

    I was worried too that when I recover form the op i would have no humira to get rid of this blooming pain but now it sounds like every thing will be ok in the end. So same as you panic maybe over, but i will still believe it when it happens with the nhs lol . Hugs Axx :)

  • It would be really good to bring in a diabetes specialist into the conversation too I would think. Are you actually under a specialist for that? If not, that might be something to ask about, because you clearly need specialist advice on things like whether or not to take MTX with the diabetes.

  • I also suffer from type 2 diabetes as well as RA. At the moment only taking Naproxan + painkillers, consultant has told me he will start me om Mtx as soon as I am sufficiently aware of the side effects. I did mention to him that I was worried as I was diabetic and he said 'the Mxt should help that too' Not spoken with my GP about this have an appointment with him on thursday so will discuss it then..

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