Improving at last.

[BPlady]

Since my diagnosis in November last year and another bad flare, I’m back to 15 mg Prednisilone. It is working well and I start reducing at the end of next week, that being 3 weeks on the higher dose.

I’m wondering if anyone has these side effects: wheezing on mild exertion, hands trembling, and excessive sweating, along with weight gain. When I had tapered previously to 7.5 mg, all of these side effects went, but are now back. As long as they are not damaging in any way, I’m prepared to tolerate them as my pain and stiffness is so much better. Does anyone else have these symptoms please?

[DorsetLady PMRGCAuk volunteer]

Pretty much par for the course for many people.

What is your tapering regime for future?

You may be able to drop back down to 10mg quite quickly, but from then on I would try 0.5mg per month - provided no relapse.

[BPlady in reply to DorsetLady]

Hi, thanks for your reply. My GP recommended reducing to 12.5 after 3 weeks ,then 10 after another 3 weeks, then reducing by 1 mg after that.

[Maisiek]

Yes ( back to 10mg)sweating and weight gain( trying the low carb diet) but worth it to have my “bounce “ back and no pain! Will Try Dorsett Lady’s Taper after asking Rheumy how long to stay on higher dose. Good luck!

[BPlady in reply to Maisiek]

Yes, I agree! It’s so lovely to have the aches and pains of a normal 66 year old, rather than everything magnified and difficult. It’s reassuring to hear that you had the sweating too. I find the wheezing worrying though!

[Maisiek in reply to BPlady]

I don’t have that- But I have well controlled asthma . X

[PMRpro Ambassador]

Various permutations get a mention every so often. How many flares have you had on the 8 months?

[BPlady in reply to PMRpro]

Several flares, I think because the previous GP just wanted to get me off them completely ASAP, as she said they didn’t suit me.

[PMRpro Ambassador in reply to BPlady]

"she said they didn’t suit me"

What a strange thing to say - on what did she base that assumption? Unfortunately with PMR it is case of what works for PMR. They wouldn't use pred if there were a reliable alternative. There isn't - even tocilizumab doesn't work for all.

[BPlady in reply to PMRpro]

That’s what she said! She doesn’t explain anything, and her bedside manner is non existent! I don’t think she likes being a GP, and she doesn’t like me! I have been very lucky as we now have a locum who is the opposite and now I feel confident in my treatment management, thanks to this doctor!

[PMRpro Ambassador in reply to BPlady]

If she doesn't like the job she should go and stop persecuting the patients because of her ignorance!

[Constance13 in reply to PMRpro]

I wonder what the answer would be if BPlady said this to her doctor.😂😂

[BPlady in reply to Constance13]

I did go to her for an injection in my shoulder before I was diagnosed with PMR, as she was the only doctor able to administer these injections. She didn’t want to give me the injection, stating that it’s not necessary and they don’t work anyway. I replied that they did work for me and did she want me to pay for it??? She gave it to me but had to put in my notes that I insisted! So glad we now have this lovely locum doctor who is the complete opposite.

[BPlady in reply to PMRpro]

If only!😉

[Viv54]

Yes i sweat terribly at 15mgs pf Pred . but when the tapering starts, these and other horrible side affect start to reduce , good luck, hang on in they will get better x

[BPlady in reply to Viv54]

Thank you, I shall be reducing to 12.5mg from Friday this week, so I will just hang on in there!