Newly diagnosed with RA: I hope I'm writing on the... - NRAS

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Newly diagnosed with RA

tina-shelley profile image
23 Replies

I hope I'm writing on the correct page. 2013 was diagnosed with PMR and treated with Prednisolone. went into remission in 2019. All was fine. I had Jab 1 of Covid all ok. Had jab 2 of Covid and exactly a week later all my PMR symptoms returned, November 2021. I began prednisone again 7mgs and have been reducing fine currently on 3.5mg. However just prior to Christmas 2021 I began getting the most dreadful swelling and pain in my fingers and wrists that have got worse over time to the point that I can't make a fist. In April I thought I'd pop over to see my GP about it and following blood tests she is almost sure I have now developed Rheumatoid Arthritis. I now cannot even bend my knees as pain and stiffness is now in this area too. I have X rays for my feet and hands and wrists on Tuesday and I'm currently waiting on a Consultant appointment. I've obviously been doing some reading up on the subject and am very concerned about being offered MTX as a treatment plan. I refused this drug when I had PMR the first time and I really don't want to take it now. Are any of you on other drugs that are less vicious and did you have any input into your treatment plans or did you simply have to take what was offered? In the meantime any advise on which pain killers or other options I can take to make my day a bit more bearable. I'm 60 years old.

Thank you so much and sorry for the long post.

23 Replies
AgedCrone profile image
AgedCrone

I took Mtx very successfully for many years……sadly those who do well on it don’t often write about it…..& in fact although a lot of people on here do write long & loud how it didn’t suit them….they are in fact in the minority.

I could write a book on the DMards I took before I took methotrexate because 20+ years ago it was not the first drug that you were offered.

The very serious side effects mentioned in the PIL…..are in fact quite rare,& Mtx is one of…if not the ……most prescribed Dmard for RA.

If your consultant rheumatologist deems it would be suitable for you, and would help you ….I would listen to that advice.

You can always stop if it doesn’t help…..but for many people it is a life-saving drug they live on very happily for years!

If you refuse it out of hand….you may well be setting off on a trail of different drugs that don’t suit you…all the time still suffering the symptoms,& chancing joint & organ symptoms.

So instead of making up your mind ahead of what you are offered …why don’t you bring the subject up with your Rheumatology Nurse or your consultant.. and have all the clinical advantages explained to you?

tina-shelley profile image
tina-shelley in reply to AgedCrone

Hello AgedCrone, thank you so much for taking the time to reply and thank you for your wise words. I like the idea of requesting that I have all the clinical choices explained for me to make a reasoned decision.

AgedCrone profile image
AgedCrone in reply to tina-shelley

That’s the spirit….don’t take/approach any drug thinking “oh it won’t suit me” cos if you do…. you are inviting failure!

KittyJ profile image
KittyJ

Welcome to the group 😊 Methotrexate (mtx) is a very commonly used drug for RA, yes you may have some side effects, not sure what you mean by vicious, but the most common side effect can be nausea which often subsides the longer you are on it, you can be prescribed folic acid to help with that if not. I’ve been on mtx for 25+ years now and would urge you to try it if you are offered it, it may be all you need to take and you are closely monitored whilst on it to reassure you. I would fight anyone who tried to take mine off me. There are milder drugs to be on but don’t try and second guess your rheumy as they will have their own ideas about what drugs they think will suit you. Bear in mind all these can take 3+ months to start to work so be prepared to give it at least that long and talk to your GP about pain relief and anti inflammatories in the meantime. Let us know how you get on 😊

tina-shelley profile image
tina-shelley in reply to KittyJ

Hello KittyJ, thank you so much for your reply. It's most certainly reassuring to hear that you've been taking this drug for over 25 years and very happy with the results. I think I have a lot to get my head round and must begin to think more logically and not so much with a muddled head. I most certainly will keep in touch with you all.

Boxerlady profile image
Boxerlady

Welcome to the group 😊I was diagnosed at 2019 at 59 and had painful hands, wrists and feet so I sympathise. I was eager to get on top of it and avoid joint damage so I just took anything my rheumy team suggested and am currently doing well on triple therapy - Methotrexate, Hydroxychloroquin and Sulphasalzine. My team were happy to discuss treatments with me and hopefully yours will be the same.

I was referred to the occupational therapist who gave me hand exercises and wrist splints and also saw the podiatrist who gave me insoles. All of that was helpful but it's the DMARDS which are the important things. There are many options available but Methotrexate is said to be the gold standard.

I was given a steroid injection to tide me over until the medications kicked in which really helped. Hot and cold compresses can help and if it's likely to be a while before your consultation, it might be worth asking your GP about pain medication; I was advised to take ibuprofen and paracetamol.

Lots of great information on the NRAS website so definitely worth a look.

tina-shelley profile image
tina-shelley in reply to Boxerlady

Hello Boxerlady, thank you so much for your reply. I'm so pleased that your treatment plan is working and I will definitely discuss all treatment options available to me and if like you MTX combo is what is suggested then so be it, after all if to works that's good enough for me.

Maisie1958 profile image
Maisie1958

Hi, I’ve been on very low doses of pred for PMR since 2015, worked really well but couldn’t get off/stay off. However after developing actual joint pain, especially my knees (you have my sympathy) I started on MTX 15mg last August as diagnosis changed to sero negative inflammatory arthritis with a polymyalgic onset. Like you I was very dubious about taking it but got lots of advice from the kind and knowledgeable people here. I know it doesn’t suit everyone but I have tapered off Prednisolone completely now and pain free (l hope I haven’t jinxed myself) I did have mouth sores and was very worried by some hair loss initially but when folic acid was increased to six times a week it really helped. I know methotrexate gets a bad press, especially on the PMR forum but I’d say give it a go, you can always stop it . I’m glad I’m on it, although still early days and under no illusion how things can so easily change. All good wishes and I hope you feel better very soon.

tina-shelley profile image
tina-shelley in reply to Maisie1958

Thank you so much Maisie, yes I have to admit a lot of my dislike of the drug has stemmed from the PMR Forum but thinking about this new development logically means this must be approached in a different way. I will discuss fully the available options and if it's to be MTX then so be it. I'm pleased that you are coping well with this dastardly condition.

KeenGreen profile image
KeenGreen

I, like many people, take methotrexate and tolerate it well. I sometimes have a foggy feeling for a few hours, but few other side effects. And I'm in remission because of it. Clearly, some people don't tolerate it, and there are other treatments but don't write off methotrexate without giving it a go.

tina-shelley profile image
tina-shelley in reply to KeenGreen

Thank you KeenGreen, I'm so pleased to hear you're now in remission...long may you stay that way.

Pythagorus profile image
Pythagorus

I have been on methotrexate for many years. I did change from tablets to injections because of stomach issues(cramps) and injections have suited me fine along with folic acid six days a week. I have had no side effects . I have regular blood tests every three months to ensure no problems I have had a biologic added a couple of years ago and because of good progress (no flares) I , with the consultants advice am now trying to reduce my methotrexate. Take heart Tina and trust your consultant and look forward to a life without pain.

Sheila_G profile image
Sheila_G

I have been on mxt for 20 years and it has served me well. I have not had a problem with it and it has given me my life back. I have certainly written about it many times on here because I want people to know that it can be the wonder drug that people seek. I know it isn't ok for everyone but my testimony to it is honest and I dread ever having to come off it for any reason. I once had to stop it for 8 weeks and was literally bedridden. It took weeks to get back on track, once I started it again. It is true that the drugs that are used for RA are strong and can cause problems in themselves but there isn't another drug I would rather take. They can all have side effects but the alternative doesn't bear thinking about. Try it you might be pleasantly surprised.

ABwn profile image
ABwn

I have been on Mtx since being diagnosed a number of years ago. Originally on tablets but am now on injections, which I find I have no problems with. It did take a couple of months at the start to sort out which medication, manufacturer and what mix suited me the best. I also take hydroxychloroquine. Good luck.

Maureengibson profile image
Maureengibson

I agree with others here and wouldn’t dismiss it out of hand. I had PMR too from 2012, my rheumatologist preferred Azathioprine at the time as a steroid sparing drug. Also partly due to developing many GCA symptoms like jaw and tongue pain, as well as scalp tenderness and temple pains Unfortunately over the years the dose crept up and caused liver issues so it was stopped. In 2016 felt something else was going on, after X-rays and scans I was diagnosed with ankylosing spondylitis, and changed to methotrexate whilst I was referred to a specialist in AS. That was 2016, I’m still on MTX and I get no side effects. I would put up a fight if anyone tried to stop it. If I miss doses my hands and feet flare, and although only 55 I walk like someone who is 95.

Rheumatologists do not put you on these meds lightly, but it’s important to get on top of the inflammation and prevent further joint destruction. I was late being diagnosed with AS having suffered back pain for 25yrs that was always blamed on my career as a trauma nurse. I had fusion of my sacroiliac joints, my ribs are fused and I have no chest expansion, and gave 3 slipped discs with the one in my neck calcifying, and starting to press on my cord. I will take anything to prevent further damage. I get no side effects from mtx, I take it in the evening so I sleep through the fatigue. The only other issue is it changed my hair from wavy to curly and it’s a bit finer. As Aged Crone says most do well on MTX but you don’t hear them because they are busy getting in with life. You are monitored closely and can stop without needing to taper if it doesn’t agree with you. Have some trust in your team to choose what’s best for you, and prevent you from further destruction 🤗

greynot profile image
greynot

Hi, I've been on mtx, oral, since Oct 2019, 20mg since Jan 2020. I also have 5mg folic acid on the 6 days I don't take mtx.Is has stopped my RA in its tracks (my left hand had swollen like a balloon, v painful, and other joints weren't so pretty)

Initially I felt queasy and foggy the day after taking it, but now I rarely notice the next day.

My hair has thinned and is much drier, but that gives it an added volume so most folks wouldn't know.

I have 2 monthly blood tests.

So I'm one of the many who it works well for, and long may that continue. And yes, I was terrified to take it initially!!!

janmary profile image
janmary

I was, like you , very reluctant to start MX - 11 years ago now. I wasn’t able to tolerate it orally but have been on injections ( easy and painless) for most of that time - with folic acid 5 days a week. My regulat blood tests have been fine and I have been able to live a normal life apart from occasional flare ups. Other DMARDS I have tried during flares have all caused me problems although I know they help other people. It’s so hard to accept at first that you need something you really. really don’t want. But now I would be frightened to stop taking it. I hope your rheum dept is understanding.

Happy5 profile image
Happy5

Diagnosed in 2012 , for certain reasons couldn't start MTX, within 6 months of diagnosis was bed ridden.Was living abroad at the time and had to come back early was seen by the GP day of arrival & seen by RA specialist nurse within 4 days . I had a long chat with her asking lots of questions.

Problem when I was given my diagnosis & treatment plan iI was in such a shock couldn't get my head round it, speaking with the nurse was totally different, had done my research etc.

My conclusion was need to try MTX to see how it goes, worse thing is, it'll not work.

Needed to prevent further joint damage.

First year it was a roller coaster, I went from MTX tablets to injection, from 1 folic acid a day not MTX day to folic acid 6 days per week.

I'm as stable as can be and it's been the difference with having a life or not.

The problem is RA and treating it, is like a rock and a hard place.

All the best :)

diana16 profile image
diana16

Hi there, I was diagnosed with RA in 1993 and was on a succession of different drugs and then it was proposed starting me on MTX but unfortunately the liver function tests showed that I have primary biliary cholangitis and so I had to manage for many years on steroid injections until I was put onto biologics as an injection every 2 weeks. They have changed my life. So if MTX doesn't suit you there is always something else they can try but definitely give it a go - I know many people who swear by it. Good luck!

oldtimer2 profile image
oldtimer2

For me the best place to check up on medications for Rheumatoid Arthritis is the NRAS website: nras.org.uk/information-sup...

Although methotrexate didn't suit me personally, many people find that it is wonderful. And there are other drugs which can be tried - and I'm afraid it is still trial and error until they sort out which bit of our immune system is overactive in which patient and can target the medication.

Sebastian247 profile image
Sebastian247

Hi Tina. I was diagnosed last year, and after 6 months on Sulfasalazine, (which didn't work for me) I started on MTX 6 weeks ago.

Like you I was really concerned about the side effects. I've been pleasantly surprised at how little I've had since starting it. I've had mild tummy ache, slight headache, and fatigue (which RA causes anyway). I've found the side effects pass after a few days and have got less each week. In fact I felt worse on Sulfasalazine. It's too early to say if MTX is going to work for me, but I'm open minded.

I've had spells on prednisolone throughout. Definitely helped with the pain and swelling. But destroyed my sleep for weeks, so even that hasn't been without side effects.

You may be interested to know my RA symptoms started a few days after my first Covid vaccine. I'm now diagnosed seronegative inflammatory arthritis. Coincidence I think not.

Wishing you all the best.

Cheers

Seb.

2bichons profile image
2bichons

Hi and welcome to this awesome RA message board ~ I love hearing everyone's experience. Was diagnosed with RA 3 years ago. Went thru 3 different drs and different meds prescribed and was still suffering from horrendous flare ups in hands, wrists, knees. I finally found a rheumatologist I liked who started me on methotrexate 15mg once a week and have not had a flare up since. In fact no joint pain whatsoever. I also take Folic Acid once a day and I have absolutely no side effects of the mtx. If you dr feels this would be a good fit for you, I would def give it a try. Good luck and anxious to hear your decision ~

Deeb1764 profile image
Deeb1764

I have had a selection of drugs to try and keep the flaring at bay and I would take any drug offered if it made me feel better and stopped the progression. I had to go thro 5 drugs and almost 2.5yers to find one that a. did not react strongly too or b. made me feel better than I had.So I get reading info can be scary but the consultants are on your side trying to get you to a better place. I always discuss changes and what why and how etc and always feel informed.

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