Exciting news!: dailymail.co.uk/health/arti... This... - NRAS

NRAS
26,231 members30,066 posts

Exciting news!

dailymail.co.uk/health/arti...

This is interesting and I was completely unaware of this research.

Carole

8 Replies
oldestnewest

Wow Carol, that is very interesting, most of it we know, but the new development is great news.

I think there is a lot of delaying treatment even when diagnosed, from what some people have said on here.

The thing is you think you have only had symptoms a short while when diagnosed, but when you look back you had sneaky symptoms for a longer time well I did anyway.

Gina.

Reply

wow, thank you so much for posting this! has brought a tear of joy :) it is very encouraging and show that it is only a matter of time before a cure or less toxic treatments become available, I realise this may be years away yet but what makes me very happy is that if my children/nieces or nephews were to have this in the future then hopefully they won't have to suffer...

I was diagnosed very quickly in the first 12 weeks, treated aggresively and now in remission, one of the few who have been treated this way I think but this wouldn't have happend without this sort of research.

thanks Carol!

Reply

Yes I read it and showed it to my hubby too - and have now decided to go for my full whack of MTX (15mgs) tonight after all with my dinner on the basis that aggressive treatment seems best option and I don't want to find myself regretting not following doctors orders just because I'm a wimp!

Williby you are an inspiration and it's so great that you were diagnosed and treated and now in remission - your case should be used as an example of best practice everywhere - long may it last! Thanks for the link Carol. Tilda x

Reply

thanks Tilda :) x

go for it! (your 15mgs) something tells me that I was an 'experiment' though!lol

good luck tonight xx

Reply

Did they tell you they were experimenting on you? I guess it's all a bit of an experiment really because these drugs are relatively new and the whole premise of treating RA aggressively is very current. So the fact that it's worked so well with you will help them realise this is the way to go with RA. And this will in turn help to focus NHS funding on this approach if it's success is proven - so you can still have a nice rosy glow about helping others re early diagnosis and anti-tnfs etc, as well as relative freedom from pain for the time being. Did they say when they might start stepping down with your drugs or are you to stay on same doses indefinitely?

Re hair; I've just returned from seeing my GP for blood check. He said he was a little taken aback about the doubling of my MTX dose as had expected me to go up more gradually but thought best to stick to rheumy's orders - especially seeing as I've already taken 15mgs last night!

He looked at my hair, which I said was getting really dry and frizzy now, and said he could see no sign of my hair falling out (he called it something medical - follicular.. blah?) or alopecia - and pointed out that earlier alopecia would probably have been connected with hormonal changes after having a baby and as a kid having chronic eczema - so not so likely now I'm menopausal and have no eczema. That cheered me I admit! But he said no harm would be done if i increase my folic acid dose so that's what I plan to do. Although I did just wonder if the folic acid mightn't be the thing that's changing my hair rather than the MTX? Any thoughts on this?

Reply

och my pea size brain needs my notes I took down on this which is sitting on my desk at work! I'm pretty certain it is the MTX and not the folic acid and I would explain why if I had my notes, I found out loads but didn't want to drone on so much....

Follicilitis, infection of the follicles, rare condition but treatable...

Thats great you are not showing alopecia signs, I would think it would be unlikely also :)

As for being an experiment, nothing was said to me, I got the impresson that treating me with 'triple therapy' and then anti-tnf at almost 6 months since diagnosis, then getting me to remission status in such a short time wasn't the 'norm'; although I have read that this is the way they hope to treat the early diagnosed such as myself..

I did have a very high RF factor reading at 1200 and the chances of controlling this severity was slim (from what I;ve read)

I could go on and on!! but little ones waking up :)

how are you after your dose last night? x

Reply

Thanks Williby - well I stupidly didn't get enough ibuprofen from the pharmacy - normally get it on prescription (this being Scotland) but forgot to get repeat so I didn't have any to hand yesterday when I was out and decided foolishly not to buy some over counter- but instead to give myself a day off to coincide with my MTX day. So consequently I got to the GP today in absolute agony in hands and wrists - could hardly bear it when he touched my arm for the blood test! At least he actually saw them both in full hideous swelling for the first time though!

And I did get a lecture about staying on the ibu1200mgs a day until MTX hopefully kicks in blah blah. I know the form now of course but worked out that with stomach liner and taking ibuprofen plus mtx etc I would have been taking 18 tablets over one day yesterday. So i got my repeat prescription this morning and now waiting for raging pain and heat to abait, which it's starting to do now thankfully.

Sorry to ramble on but to answer you question no ill effects from MTX dose I'm really quite delighted to say!

Reply

PS the comments at the bottom of the article were annoying though - why ask about cures for MS - at least everyone knows how awful MS is and there's loads of research being done - it's as if they don't think RA is serious enough by itself?!

TTx

Reply

You may also like...