Scientists achieve breakthrough in treating 'neglected' polymyalgia rheumatica

[Motida]

While looking for something on PHIND, this heading came up. I am not sure of the our policy in uploading longish articles or links to them.

I found the article of interest and it quoted Dr Dasgupta, so I felt it was authentic. Perhaps our ambassador or Lady Dorset can say if we have already had the article flagged up and if not , if they think my sending a link is useful.

Shall wait to hear.

BTW thank you for the suggestion of taking 2/3 of Pred around 2.30 a.m. in readiness of attacking the inflammation coming up around 4 a.m. I have done this for a week and it has changed my life in the mornings. Have also noticed less napping and needing to sit down in supermarkets or leaning against walls! So Thanks.

[PMRpro Ambassador]

I posted about it 7 months ago

healthunlocked.com/pmrgcauk...

but said at the time - don't get too excited! Prof Mackie was of the opinion it was unlikely to get approved in the UK any time soon. However - the meeting a couple of weeks ago did suggest that opinion about "just PMR" seems to be shifting and it is being realised it is far more complex and serious than they thought 20 years ago - and that is what informed the current attitudes. But Actemra is still only available for GCA for a year and I doubt Kevzara is significantly less costly - and with a far larger potential patient population looking to be offered it.

Great to hear the middle of the night dosing is helping - bit of a pain to take it then but it matters less when it has a beneficial effect doesn't it? I also take my pred then - but in the form of a 10pm dose that releases at 2am. One of the things I would lose if I moved back to the UK.

[DorsetLady PMRGCAuk volunteer]

You can always add a link to an article re PMR/GCA -provided it’s “legit” -so please add one.

Not sure I’ve seen this article/study but PMRpro may have..

[PMRpro Ambassador in reply to DorsetLady]

Posted about it 7 months ago ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Thought you might have.. obviously didn't register enough at the time, probably because you said don't get too excited... 🤦‍♀️

[PMRpro Ambassador in reply to DorsetLady]

Well - are YOU expecting it to take over from pred in the near future??????

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Nope!... 😏

[Motida in reply to DorsetLady]

Thanks to you both for clarifying things. I am glad I did not upload it without checking. I read another article which followed that one and it there was a lot of uncertainty about the drug Kevzara. It is only available for people who cannot taper Pred adequately it said. Best to stay with what we know and be patient for PMR to burn itself out.

[DorsetLady PMRGCAuk volunteer in reply to Motida]

Well it’s new, and not available in UK at present..… but that doesn’t mean we shouldn’t be looking for new drugs. But sometimes you have to stick with the tried and tested… at least for time being.

[PMRpro Ambassador in reply to Motida]

It wouldn't have been a problem - doesn't hurt for something like that to be reposted, people join the forum all the time so there will be people who didn't see it first time round. The other article sounds interesting though.

[Motida in reply to PMRpro]

The other article came from PHIND because I asked it about Sarilumab (Kevzare). If you have not come across Phind, it is used by developers more and is AI but lists its source material down the side. This kind of authenticates the answers it provides a little more than google does! I did not copy what I read I am afraid.

[PMRpro Ambassador in reply to Motida]

Hmmm - not too sure I'd believe an article generated by AI unless it had been authenticated by an expert!!!