WORRIED : Hi 1st post from me - site very informative... - NRAS

NRAS

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WORRIED

MAHGS profile image
4 Replies

Hi

1st post from me - site very informative & supportive so really interesting reading all the posts. Wish I had known about this site when diagnosed 20 years with RA in early 30's. On Sulphasalazine, Methotrexate( Metoject) Folic acid , Gabapentin & Naproxen . Hands & feet affected quite badly . Have been very lucky to have been in chemical remission for several years bar a few flares .so thought I had dodged the bullet.

Unfortunately i have had active disease in hands for the last year confirmed by ultrasound ( consultant got quite excited by ring of fire in my wrist !) My Crp & ESR bloods do not reflect the inflammation . So thats why i have felt so ill!

Dillemma - To get over any cold flu or bug( which i picked up constantly) I have always had to come off methotrexate to recover. ( that was on 7.5mg meth) Consultant says under NO circumstances should I stop meth unless prescribed certain antibiotics. ( Rheum nurses then contradicted this !)

Now I am on 17.5 mg am very worried about the winter & what it will hold 😬

Your advice is much appreciated. Thank you

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MAHGS
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oldtimer profile image
oldtimer

The consultant is trying to make sure that you have the maximum suppression from MTX, so doesn't want you to stop it.

I can never see the point of stopping it - it's a long term treatment that takes time to build up and time to get out of your system. So unless the only antibiotic you can take is one that actually interacts with MTX, I can't see any reason to stop it.

Of course MTX always reduces your ability to fight off any infection - but comparing an infection lasting four weeks instead of three with getting damage to my joints which is permanent, I would go for the infection lasting longer.

Everything is a risk - living is a risk - you just have to weigh up which ones are the least harmful for you personally.

MAHGS profile image
MAHGS in reply to oldtimer

Thank you for getting back to me.

When ringing Rheumatology have always Ben told to miss a week or two to get over a bug . So have never missed without medical advice. I can be ill for weeks ! I also have bad asthma so that is in the mix as well .

Seeing my gp on Friday so will ask her going forward . She also thinks Imy RA relapse is due to leaky gut . 2nd brain and all that . Her partic interest!

So if I can get get her off topic ....

That summed up my RA review - nothing about cardio vascular , lungs etc . Hey ho - this Ra is a bit like the body snatchers 😬

stbernhard profile image
stbernhard

Hello Maghs, fortunately we're not qualified to give advice on medication, otherwise you might be even more confused by now. I hope you find a way of getting the consultant and the Rheumy nurse to talk to each other without you having to be the messenger. All the very best.

MAHGS profile image
MAHGS

Of course- just wondered whether anyone had the same experience.

Anyway time will tell - i guess the GP will be 1st port of call.

Have a great day! 😊

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