Better taper management

[MarionA]

Hello again helpful people. I thought I'd update on my progress managing PMR, which was not going well 3 months ago. I took your advice and visited the dentist, to have a wisdom tooth out and no prospect of Alendronic Acid for at least 3 months, so that was worth it.

But after I failed at reducing from 15 to 12.5mg, and again from 12.5 to 10 mg and then my GP would only give me a plan via the receptionist (taper 1mg every month until zero), who couldn't answer any questions I realised something had to change and, as you also advised, I asked for a new GP.

At the first telephone appointment, when I said I couldn't successfully taper, my new GP immediately answered that some people can't manage the recommended decreases and has put me at present on a 0.5mg reduction per month. I now have telephone appointments to discuss my progress and next step every 3 weeks. As a consequence my symptoms are now much better managed, my stress levels much reduced and I am much happier. And the new GP hasn't mentioned AA once!

[DorsetLady PMRGCAuk volunteer]

Glad to hear you have found a sensible GP… but just a minor word of warning you may find that even at 0.5mg, reducing every 3 weeks is too quick especially as you get lower and into the “adrenals needing to start think about functioning again” zone …

[MarionA in reply to DorsetLady]

Thank you. I'll remember that. I have the impression she is prepared to be flexible and she does listen and ask for my impression of how things are going so if there is a problem I'm pretty sure I could negotiate slowing down- and I do have all the information from this website to justify that, should I need it.

[PMRpro Ambassador]

Hallelujah!!! There are GPs of sense out there. Hope she stays around for you now.

[Sophiestree]

Hurrah for your new GP.... must be a huge relief to you.

[MarionA in reply to Sophiestree]

Thank you. Yes it is. I didn't realise how stressful the situation with the first one was until I knew I would no longer have to deal with him and I wonder if being released from the constant struggle has also helped my symptoms improve.

[PMRpro Ambassador in reply to MarionA]

Stress of any sort has a really bad effect on PMR ...

[Sophiestree in reply to MarionA]

I wouldn't rule that out at all. Emotional stress is real

[BLUEPMR]

We are ill we could do without all the added stress and battles with the non existent doctors what ever happened to the oath first do no harm 😡. Rant for the day over.

[Gossiplady]

Hi MarionA! So pleased doctor probs are sorted out. I know all our bodies are different and fortunately my doctor leaves me to my own to decide on tapering. So from arriving at 5mgs I have been tapering at 0.25mgs for around three or four weeks which has been great for me. Now down to 0.75mgs, feeling fine, but now on even slower . I am always so worried in case I have a flare. Unless you have PMR you have no idea what pain is. Initially all those weeks of that terrible pain, I used to tell my daughter I would prefer five childbirths. Keep strong!

[Jackoh]

Great result! Hope your progress from here on will be smooth. Xx💐