New to HU.: Hi, I’ve just joined HU to get advice from... - NRAS

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Skezza profile image
15 Replies

Hi, I’ve just joined HU to get advice from others in a similar situation to me. I have RA and am taking methotrexate and folic acid. I was concerned about taking my medication during the virus pandemic and couldn’t get through to my doctor so decided to look elsewhere and was directed to this site. Hopefully it will help and maybe I can help others by sharing my experiences.

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Skezza profile image
Skezza
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15 Replies

Welcome Skezza I am too on MTX and folic acid plus a couple of other things as been told to stay on the meds during c19. Forum great for questions, rants or just moments of fun too. Take care.

Skezza profile image
Skezza in reply to

Will do Deeb. You too.

KittyJ profile image
KittyJ

Hello and welcome Skezza, I hope you find this forum useful. Please don’t stop your meds without talking to your rheumy first. You risk flaring and the damage that can cause not only to your joints but your lungs, heart and other organs. Your rheumy can allay any fears you may have, please talk to them 😊

dawkin_S profile image
dawkin_S

Hi Skezza, nice to meet you!

I'm another methotrexate and folic acid user (plus hydroxychloroquine). Current advice is to definitely take your medication, unless you get covid19 symptoms, which hopefully will not happen! NRAS has a guide here: nras.org.uk/frequently-aske... and Versus Arthritis have one also: versusarthritis.org/news/20...

Hope that helps!

oldtimer profile image
oldtimer

Your best source of advice is the NRAS website. It is full of information for people like us.

But please also ask what you like here, there is also a wealth of experience.

But when you read the posts, remember that most people are coping well with their Rheumatoid Disease and their treatment and don't post. It's those of us that are having problems that tend to post, so you may get the idea that everyone has problems when that's not so.

Entero profile image
Entero in reply to oldtimer

Very true. I rarely visit the site now that my condition is under better control and lead a near normal life- or at least I did until Covid! I so appreciated everyone's advice before that however - especially from those like you who have been here for a while. Thank you 💛

sylvi profile image
sylvi

I don't know the answers that others have said in answer to your question, but my advice is DON'T stop medication unless told by your rheumy or your doctor. xxxxx

Zip1 profile image
Zip1

Welcome and I agree with everyone, keep taking the medication. Only stop on dr advise! X

Hi Skezza,

I think you'll find this community extremely useful and welcoming, as there's such a wide range of experiences and knowledge.

I tend to dip in and out (when I have the time) and receive the daily emails, which summarise the topics from the previous day.

I also joined NRAS to support their work, and receive their news letters every now and then, now on emails.

NRAS also have some excellent leaflets which are definitely worth a look and can help in helping those around you to understand the disease and its effects, and how it can impact on your life. Many people here find that others can be more supportive if they understand more.

Also, I found out from my Rheumatologist this week that, having RA and taking Methotrexate does not in itself put you in the high risk category - but then my RA is fairly stable. There has also been some research to suggest that RA patients cope better with the virus because of the immunosuppressant drugs we take, as they dampen down the immune system's reaction to the virus. Without this there is a higher risk of an overload (storm) of immunity response, which has caused problems in some covid patients. So it looks likely that our meds would continue to be prescribed even if we do contact the disease.

Also, as there aren't that many RA support groups in my geographical area, this site has been my go to support for the last few years.

Best wishes.

L

Skezza profile image
Skezza

Hi all, thanks for your comments and advice. Seems that the vast majority recommend that I continue with my medications. I’ll have a look at the nras website to get more background. I remember back in the dark days before I started methotrexate when I couldn’t have a bath as I was worried that I wouldn’t be able to get out. The drug changed my life and I’m now able to do things that were impossible 8 years ago.

Thanks again, and I will carry on.

AgedCrone profile image
AgedCrone in reply to Skezza

Really thé only person you must listen to regarding any medication is your rheumatologist.

Here we can say what we do, or what we have read ...but you must never stop your meds or change the dose because of something you read here.

If you are on more than one drug....stopping just one could cause problems....& could make you feel worse.....always check with your rheumy,

There is a lot of good information available here.....but any drugs we take or stop taking are always on the instruction of our doctors.

Grayling profile image
Grayling

Hi, you must keep on taking all of your meds, otherwise you will end up in a sorry state. I was told this by my Rheumy nurse, I have had no side effects, the folic acid is only a vitamin. so crack on, and head down, be like the rest of us and hope this crap soon burns its self out. Best wishes

Skezza profile image
Skezza

Thanks Grayling, will carry on. Why a fish?

Grayling profile image
Grayling

Because when mother nature and my R A allow, I love to go fishing!!

Skezza profile image
Skezza

Same here! Looking forward to being on the bank again☀️

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