Good news?

[Lyndaki]

A full page article in the Mail today re PMR & a possible new treatment…trials being done by Dr. Dasgupta. Sorry I can’t post a link but have attached a photo of the article.

[PMRpro Ambassador]

This is the third post referring to it but you can't read it on the photo and we couldn;t identify it online.

What is the putative "new medication"? If I remember rightly the one he's been playing with is sarilumab, sold as Kevzara. It has already been approved in the USA and a few people on the forum have been offered it.

But since one assumes the DM is aimed at Brits, unlikely in the foreseeable future and certainly not first line.

[Highlandtiger in reply to PMRpro]

That's exactly what it is! I've posted the text on one of the other posts about the article.

[Lyndaki in reply to PMRpro]

Yes, that’s the one. Apparently it’s possible that NICE could approve next year.

[PMRpro Ambassador in reply to Lyndaki]

Having participated in the early stages of a NICE approval process and knowing people who were heavily involved in the approval of tocilizumab for GCA - I wouldn't hold my breath waiting for that! The NICE approval can take years.

A far more accurate representation would be that it is possible that it may be submitted for NICE approval next year. They are very unlikely to be ready to approve it that soon. I hope I get to eat my words - not least because that might mean I could return to the UK without losing my hard won stable status after nearly 20 years of PMR!!!

[DorsetLady PMRGCAuk volunteer]

Four other post on same subject….😊

[AtopicGuy]

The article is based on this US-based study from October 2023, which includes Dr Bhaskar Dasgupta as an author:

pubmed.ncbi.nlm.nih.gov/377...

Quite rightly, those not injected with sarilumab were injected with a placebo instead. The study was funded by Sanofi and Regeneron Pharmaceuticals, the makers of sarilumab (brand name Kevzara).

[Musiclady18]

Here is the link to the article so that you may read it in full ! pressreader.com/uk/scottish... Thank you Lyndaki for bringing it to our attention.

After reading the article I am off of Prednisone but my Rheumy has me on Methotrexate (1x per week) and Leflumide (daily). Since my next appt is one year away I think I may be on this longterm, any thoughts? I do get bloodwork every 6 weeks.

[PMRpro Ambassador in reply to Musiclady18]

Frankly - I'd choose pred over taking 2 DMARDs any day!!!

[Musiclady18 in reply to PMRpro]

Thanks for your reply. Further info on your reply? I am not having too many side effects, tiredness for sure. Did not like prednisone weight gain and could not get it down?

[PMRpro Ambassador in reply to Musiclady18]

I had gained weight with 5 years of undiagnosed and untreated PMR. It rearranged with prednisolone but then I had a few months on methyl prednisolone and gained a lot. Then I was switched to prednisone, went on a low carb diet and lost 35lbs in about 18 months. I could do with losing more but I'm not complaining too much. I tried MTX but after a month I couldn't function, could barely put one foot in front of another - and had gained weight!!! The adverse effects people I know have had on leflunomide really put me off - severe diarrhoea and neuropathy which really scares me.

[Musiclady18 in reply to PMRpro]

I guess the side effects I had on Prednisone outweighed how I am on MTX and Leflunomide so I carry on with the latter two!