At last, some let off for him!!

Hi,

Following on from previous posts in relation to my farther R/A & PMR.

After going from 10mg up to 50mg last Tuesday, my farther had his first 2/10 day on Monday which was followed by a 3/10 on Wed & 3/10. This is possibly the first time in months he has felt like this (apart from a steroid intrusion) and I can tell even in his voice tone that he feels different. This coincides with him being off the Met for two weeks now when they decided that it was not working as it should.

He has another appointment tomorrow in preparedness for them starting some biological treatment for the R/A? although this was the original diagnosis prior to PMR I would like them to clearly provide the data points for the R/A before treating with biological treatments. This is due to the fact that the only thing he has responded to now is the 50mg pred in months with nothing else. Is there any key questions we could ask to identify R/A & PMR Diagnosis,

Anyhow, onwards and upwards hopefully we are turning the corner with a massive contribution to your support group,

Many thanks again

Ryan

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Hi Ryan,

So pleased to hear better news about your Dad. You must be delighted that something seems to be helping - although some way to go.

Can't help you with the RA side of things, but sure others who have it will respond.

Good luck - to all of you.

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Thanks so much for you kind support

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So glad your father is enjoying some relief. I really hope it is onward and upward from now on. Please give him my best wishes.

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Hi Sonofjimmy,

In researching Actermra for my GCA, I learned that, if methotrexate is not successful for RA then, Actermra is a newer alternate biologic, is prescribed. It seems to be more effective than methotrexate from what I have read online and has less side effects. Might be worthwhile to do a little research prior to the doc visit.

Wishing your dad the best.

TJ

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Thanks TJ will do that later

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Just as a note, some rheumatologists here in the US use Actermra (biological) off label for PMR.

TJ

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Only a very few - and getting funding is very difficult unless the doctor calls it RA and the patient fails methotrexate. Or they can get on a pilot study but they are few and far between.

Isn't available in the UK for PMR under any circumstances.

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There are none for PMR, it is a diagnosis made on the basis of clinical symptoms and response to pred in the absence of any other potential diagnosis. However, "just" PMR would not usually require 50mg to control it. There is a biopsy for GCA - but it is unlikely to show anything after so long on high dose pred. Some hospitals are able to do ultrasound of the arteries which would show typical signs of inflammation. PET/CT would perhaps have shown something at the beginning - it won't now as he is on pred which will mask the inflammation.

In many patients with RA the blood tests are similar to PMR but the anti-CCP test (anti-cyclic citrullinated peptide) is felt by many rheumatologists to be very predictive for a progression to full RA at a later stage even if there is no joint erosion which as far as i know is really the only definitive thing about RA. The idea is to prevent that happening by early treatment.

Actemra/tocilizumab has been mentioned - it works for both GCA and RA and would seem to me to be something they should perhaps consider. But I'm not a rheumatologist!

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Humiria is the name of the biological treatment he will soon start, unfortunately he dipped on Friday prior to an appointment they said he could go up to 80mg pred. He went up to 60mg and feels better although he has tingling sensation in his fingers and feed fell warm as he describes it, he said he wants to go back to 60mg tomorrow 🙏

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What they have said is yhe fluid gas home solid around his joints making it hard to treat and explains the acute conditions, hopefully this biological treatment may help, they will let him stay on the pred until they see some results

Thanks again

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