Good rheumatologists do exist

[GrandmaPirate]

Of no help to you in the UK but here in Belgium I do have a good professional for PMR at a nearby hospital. I was put on 20 mg/d last year in May and dosage was decreased by 1 mg/d each 4 weeks until March 2021 when on 2mg/d I started to feel some pain in the arms. So instead of going to 1mg/day, the rheumi proposed to alternate 1 and 2 mg for 30 days. On 12 April I got my first Astra Zeneca shot with 38°C fever and 4 bad days thereafter. My PMR flared up and I called desperately on 7 May the rheuma dept to have an earlier appointment. Impossible everyting fully booked, so I had to wait until yesterday but was allowed to take again 2mg/d. It didn't help much, so I reported everything to my rheumatologist yesterday, who concluded that it had not been the best idea of her to continue tapering off just at the time of vaccination. She put me on 6mg/d for 23 days and then on 3 mg/d until my next appointment on 10 August. I told her how helpfull Kate Gilbert's survival guide is and the pmrgcauk.com group. With her you really can discuss the approach and questions. I just wanted to share a positieve experience too.

[PMRpro Ambassador]

I have a terrific rheumy here in northern Italy too. And I personally know at least 3 who fulfil the job description in the UK. They do exist - just not enough of them around!

[123-go]

Your rheumatologist has an excellent knowledge of PMR and its management. I'm really impressed.

[Predderman2020]

That is encouraging - did your upward Pred adjustment do the trick? I experienced a reaction to AZ which still blazes away after a month, despite raising Steroid dose dramatically. Guess I just have to wait for the reaction to go down. Others on the site have reported a delay of anything from 7 weeks to 5 months for the reaction to die off. Is yours OK now?

[GrandmaPirate in reply to Predderman2020]

I am only my 3rd day again on 6mg/day, so I have to wait a little bit longer to see if I will be 100% ok as I was before . Anyway I could do again 15000 steps yesterday with my dog, but pain in upper arms and upper legs not yet fully gone and only a restricted number of pilates exercises are possible. My rheumatologist put me for 23 days on 6 mg because on 5 July I will have my second AZ shot and only 3 days thereafter, when ok, the dosage will be reduced to 3 mg/day. I cross my fingers.

[Predderman2020 in reply to GrandmaPirate]

Thanks. And good luck!