I’m now an experiment … of one!

It’s been a pretty good few days since my last post. I have had minimal pain with some days being completely pain free altogether (like today). And then today, following last week’s letter from the consultant telling me that he didn’t have any objections to me starting Doxycycline for my PR, I saw my GP. She was pretty sympathetic, and questioned the small dose that he’d suggested I take.  We agreed that we have no way of knowing that the doxy was behind an improvement in symptoms while I was overseas, – it could have been a whole host of other things, including the change in diet (lots of fish) and weather (very sunny, not much rain). However, she said that she was willing to stick her neck out and prescribe me three months of the doxy at the same dose I had been on. She said that as this is not the regular treatment for PR, she really is sticking her neck out and that, after she retires in March, there are no guarantees that her colleagues will do the same for me. However, by then, I will hopefully have a good idea of whether my attacks are less frequent (or, fingers crossed, gone altogether?), and she did say that if there is good evidence that it is helping, that will be in my favour. She is writing to Dr S. to let him know what is going on and to ask whether I’m to continue on the Hydroxychloraquine as he did not mention that at all in her letter.

The tricky thing is that, until there is good scientific evidence for something, the doctors and consultants aren’t really supposed to prescribe it or offer it. And yet, with very little research into palindromic rheumatism , there’s no prospect of that evidence for new treatment or ways to prevent flare ups. Even if the doxy helps me, an experimental group of one is not statistically significant enough for anyone (but me!) to take notice.

So, the current status is that doctors treat those of us with PR with the treatment for RA, but they still have no real idea of whether it’s going to help before they prescribe it – this condition is so variable, and so individual. Treatment also seems to vary across the UK depending on the consultant or GP. There seems to be little consistency in either diagnosis or treatment.  One woman who messaged me on facebook was just told by her GP to “look it up on the internet”!

Anyway, I feel extremely grateful to have been able to see my sympathetic GP, who I have been under since 1991. She retires in March. She’s seen me through a lot in my life and I truly believe that she’s always had my best interests at heart.  I’m really pleased that she’s taking this wish to experiment with my treatment seriously. I shall be really sorry to see her go.

Tomorrow I will get the piece of paper with the prescription on it converted to a box full of pills and will start taking the antibiotics. I hope to be disciplined enough to keep a good record of what’s going on with my symptoms (I’m hoping that readers of my blog can help me with that!) so we can see if there is any improvement. As my GP says, “If it does improve in the same way that it did when you were overseas, at least we won’t be putting it down to the weather”.

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One response to “I’m now an experiment … of one!

  1. In my brief encounter of a serious illness (which I am thankful it got resolved) I was surprised and rather shocked to experience on my own skin the stresses of finding a GP that was not arrogant, that listened and that had my best interest at heart. I found that finding the right GP was *the* barrier to move onto proper and correct treatment (hospital wise), once in hospital I have had the best care ever. But the experiences of patronising and rather ignorant GPs that I have had is numerous and disheartening.

    When I did eventually found a great GP (the one who helped my kidney issues be properly diagnosed and treated) I then moved home, although I only moved two miles away from my previous address I was out of the ‘5km radius’ (I think that’s the criteria) of GP surgeries, meaning I had to lose my beloved GP. I shed plenty of tears of worry and had several panic attacks at the thought of starting all over again. It has taken me yet another 3 GPs before finding another decent one 😦

    One of my dearest friends has Lupus, she had similar awful experiences with GPs, one was so bad that when she first went to see him he said “What’s that?”

    I wish patients would not have to go through this! I am grateful and proud of the NHS, but it’s unfair to have to worry not just about being ill and getting better, but worry about finding a caring and knowledgeable GP in the first place.

    L xxx

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