An inconclusive letter

It’s not  been a great few days as far as my PR goes. I’ve had two quite painful flare ups. Sunday night’s came on at about 8 and got worse and worse til bedtime. I managed to sleep okay, with the aid of codeine, but felt really groggy and foggy on Monday. Not sure if that was down to the codeine or just the attack itself. By tea time on Monday the pain had all gone from my hands and was mild in my shoulder. Tuesday was a good day in terms of both energy and pain – in that I had lots of the former and none of the latter. Unfortunately, though, I started to get another flare up in the evening. It came on quite quickly. 9.30pm. No pain. 10pm: creeping pain in the fingers of my right hand and sharp pains in my shoulder. By 10.30, my hand was stiff and very painful while the shoulder was so bad that it was really agony every time I moved in bed. A heat patch, two hot water bottles and some more co-codamol meant that I got some sleep but it was by no means enough, as I dropped off sometime after 12 and woke at 6.

So, when I saw that the post this lunchtime had brought a letter from the consultant, I was a little nervous about what it might hold. Would I be allowed to try doxy? (the antibiotic I had wanted to try) What would he say?

So.. the letter is sort of inconclusive. His research had not found any research related to palindromic rheumatism and antibiotics (but as there’s so little research anyway, that’s not surprising) and the research on rheumatoid arthritis was inconclusive – and suggests that it should be tried alongside methotrexate and not alone. He finishes by saying that he has no objections to me taking it at a low dose (just over half the dose that I took while I was living overseas) if my GP agrees. He does not mention whether I should continue with hydroxychoraquine, (the drug I’m already taking) or up the dose of it (as Dr Y had said), nor when I will be seeing him again. He does not seem to have had a look at Road Back, which is advocating antibiotic therapy for rheumatoid arthritis, though I had given him the link. Having had a look there, the recommended dose is twice the one that I was on while overseas.

So, yet again, I sort of feel a bit adrift. Is it worth trying doxy at the low dose, even though that’s much lower than the dose I was on when I was away?  And a much lower dose than that suggested by the Antibiotic Protocol? Or maybe I should just bite the bullet and try methotrexate anyway? Though he doesn’t suggest that I try either. Perhaps if I was having a pain-free week, then this letter would be water off a duck’s back, but coming just after two bad attacks, it feels a little like being kicked when I’m down.

What next? Next I have to see the Dr anyway, as I can’t get the doxy without her permission and without her prescription. Perhaps I can persuade her to prescribe me the higher dose? Either way, it feels that I’m on my own with this. The lack of research into palindromic rheumatism does seem to be a massive obstacle to the treatment of those of us who have it, especially as the rheumatologists seek their guidance from established research.  Instead we end up being the researchers – using trial and error to see what works with us as individuals and hoping that we’ll find something, somewhere that will make the difference.

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7 responses to “An inconclusive letter

  1. What difficult situation.
    If your GP is OK she will help you in making a decision. I hope in the meantime that you get some respite.

  2. Glad to hear you have found out about the antibiotic protocol. I discovered the Roadback Foundation many months ago and I have been on Minocycline (Aknemin) for nearly three months. It is still very early days to notice any difference. It gives us hope though doesn’t it?? That we have tried everything we can to get better 🙂 even if that means we eventually need to revert back to the conventional drugs.

    Your blog is brilliant. I am sure it will help many with their journey to wellness…

    Patricia x

    • thank-you Patricia. It remains to be seen as to whether I’ll try the antibiotics. I will see my GP on Monday and see what she says. People’s comments, and knowing that they’ve been reading the blog and it’s been useful is definitely helping me through the difficult days. good luck with your treatment.

  3. My husband has been on Mxt for a few years now, in the middle of those few years he had spell of feeling queezey for the day after. This was his only side effect. A neighbour had a similar problem so he takes half dose twice a week instead of full dose once a week. Wierdly my husband’s settled when he added in anti TNF! He reacted to this at the end of October having been on it about a year. So he’s starting Rituximab this week.
    Maybe I missed it but can I ask why you’re not keen on Mxt? Sounds like your arthritis is pretty active these days and so maybe you need a pretty active drug?

  4. Hi Lucy,
    Yes, I definitely need a change in drug regime. I was anti Mxt cos it seems like such a scary drug and I am worried about side effects. I also wanted to investigate the antibiotics first because, anecdotally, I was better while taking them when I was overseas (with no noticeable side effects) so it seemed to make sense to give them a go.
    I see the Dr today so will report back.
    All quiet on the pain front today so far though. 🙂

  5. I suffered from Pr for several tears. I was diagnosed with gout. Wrong diagnosis. I was properly finally diagnosed by Dr David Trentham in Boston. I was allergic to the plaquinrl and he switched me to doxycycline. I took it for a couple years and have never had another attack

    • thanks for your comment. Unfortunately the doxycycline really didn’t help me, which was a real shame. Glad to hear you’ve not had another attack. Good news stories are always appreciated – they give us all hope!

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