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[Karalyn53]

Hi, I was diagnosed with RA 3 weeks ago having only had symptoms for about 6 weeks. My doctor was fantastic and had me at the specialist the next week who said weve found it at the very start so I feel lucky when I hear of people who've struggled for years for a diagnosis. I'm not in any pain , only slightly uncomfortable in my finger joints, that's the only place I have it so far. I've been put on methotrexate and taking folic acid every day apart from mess day. I've not really had any side effects yet, just more tired than usual. I'm interested to hear of others on this drug as all I've read so far are horror stories and if there's anyone who's not had too bad effects

[MickeyJoints]

Hi and welcome,

Sorry to have you here, that sounds like a rapid diagnosis - fantastic! Is your RA factor up in your blood work?

I was on MTX for some 6 months. I started on tablets but I had an upset stomach with it and went to sub-cut injections. Much better. I did feel a bit odd on the day and the day after I injected, especially the fatigue. Some have had nasty reactions and it's the luck of your genes, I think.

Sadly, it didn't touch my condition so I'm off it now. I hope you have better luck - there is a drug out there which will work!

MJ

[Karalyn53 in reply to MickeyJoints]

Thanks for your reply MJ, it's great to hear from others with same condition

[helixhelix]

I've been on methotrexate for 6+ years now and am fine. After the first few weeks the side effects faded away, and I'm just a bit more sleepy the following morning but that's it.

But you have a great doctor!

[Karalyn53 in reply to helixhelix]

Thanks for your reply, feel much happier now I've heard from others with same condition

[trish1957]

Hi I've been taking mtx for four years now and have had no problems with it.

Trish

[Karalyn53 in reply to trish1957]

Thanks for that Trish, I've been so worried about taking them I think I'd talked myself into the idea I'd be worse case scenario but I'm now much more positive

[trish1957 in reply to Karalyn53]

I'm sure you'll be fine. I was very apprehensive when I first started taking it and thought horrible things would happen but if it wasn't for mtx I'm not sure where I would be now.

Good luck.

[Karalyn53 in reply to trish1957]

Thanks, same to you

[JacquiThomas999]

Welcome to the club.

I have been MTX for a year now. They added Hydroxychloroquine in to the mix during the summer. I did have a nausea problem at the beginning, but when they upped my folic acid to everyday bar MTX day, I was better.

I hope you have success.

Jacqui

[Karalyn53 in reply to JacquiThomas999]

Thanks Jacqui, fingers crossed

[Karalyn53 in reply to JacquiThomas999]

Thanks Jacqui, positive attitude helps I think

[Eiram50]

That's so positive for you. Catching it at the start makes a world of difference.

I take biologics and methotrexate and I do suffer some side effects- sickness, fatigue and hair is falling out a little but I can get through that, and hopefully it will work to slow disease down.

Like any of these drugs, they affect people differently and I know many in here have used for years, with little side effects.

Best of luck to you

Marie

[Karalyn53 in reply to Eiram50]

Thanks Marie, feeling much more positive now. Had no idea how many people have RA

[stbernhard]

Hi there, you are lucky indeed. The earlier you're diagnosed after onset the more effective is the treatment. I've been on MTX for over six years and once I changed to injections never had any problems, just benefits. All the very best and keep in touch.

[Karalyn53 in reply to stbernhard]

Thanks for reply, I'm feeling much better about this now having some positive feedback

[Tillie20]

Hi I am so glad you did not suffer with a lot of pain And was diagnosed so soon, it took over 1 year to be diagnosed was on steroids for 1 year which made me put weight on as I seemed to eat anything plus I stopped smoking was on mtx tablets but after a couple of months felt nauseous so was put on medijet pen which is so much better and I am one of the lucky ones and I am pain free ache some days also so far lost 2 stone and do not ache as much as I did I advise loose some weight if you are over weight

[Karalyn53 in reply to Tillie20]

I could probably do with losing some weight, half a stone in a week so far but I've no appetite whatsoever and having to force myself to eat. Hopefully this will pass

[AgedCrone]

I

Hi.Karalyn. .....I had a similar experience.....being diagnosed early...but no thanks to my GP. She told me I should expect aches & pains as I got older & told me to take an aspirin!l! So I got referred to a Rheumy Professor by a friend ...a hospital doctor....but not my doctor....who diagnosed SP RA straight away(after bloods of course)

Anyway.....I stupidly refused Mtx for a couple of years, & relied on Depo injections & painkillers..... but eventually I took oral Mtx & folic acid & I had seven wonderful years....yes I did have to change meds & now 17 years later I have just (Oct 2016) started Retuximab.

I have had ups & downs, but l luckily have only needed Neuromas surgically removed from my feet, & I have no other joint damage except a couple of wonky finger joints...but that is OA not RA.

On reading of the suffering & terrible reactions some people have to RA meds I consider myself very fortunate. I did have nasty reactions to oral Prednisolone & Sulphasalazine....so I just avoided them ASAP.

I do hope you continue to fare well on Mtx.....from what I have read here it is just the luck of the draw with this drug .....but if you are doing well on it straight away that seems to bode well doesn't it?

Hope that sets your mind to rest.....horrid as RA is there are some of us who have had a bearable life whilst navigating our way through all the pills & potions......I really hope you are one of them.

AC

[Karalyn53 in reply to AgedCrone]

I agree with you that it's just your luck, I've never been ill a day in my life so took this diagnosis a bit hard but no point dwelling on it, I'll do all I can to help myself now

[DelicateInput]

My personal view, reviewing a lot of posts from different people, is that (a) if you are young and (b) diagnosed early after onset of RA/inflammatory arthritis, you stand a good chance of the drugs being both effective and stopping the RA and also of not causing serious side effects .

If you are older, as I was at 65, and you do not start the drugs within the recommended timeframe of three months (let alone after a year), then frankly, I think they are going to do more harm than good - which is what happened in my case. I have had some very serious side effects which are far worse than the RA itself and that was a pretty severe and sudden case because I have joint damage in my hands.

[Karalyn53 in reply to DelicateInput]

I'm 53 so don't know if that will make a difference, fingers crossed

[DelicateInput in reply to Karalyn53]

Given you will be getting treatment with the DMARDS within the recommended timeframe of three months, I think they are well worth a try. Otherwise, I would not think them worth the risk unless you are young eg 20s/30s.

[AgedCrone in reply to Karalyn53]

I was about 63 when I started Mtx & had 7 good years on it.I was originally diagnosed at 59.

I'd had breast cancer, but otherwise was reasonably healthy.

I haven't heard that age has anything to do with efficacy of any Dmards....unless you have some pre-existing condition!

My Rheumy is very communicative & has never denied me meds because of age. The only time I couldn't choose was when I went on to biologics because there are some you can't have if you've had cancer because they can encourage skin cancers.

Try it Karalyn..I'm sure your Rheumy would not prescribe it if he thought there was anything in your history that precluded it. If it disagrees with you.....stop it & try simething else!

AC

[Karalyn53 in reply to AgedCrone]

I've had a good week with no symptoms, took 2nd dose this morning so shall see what this week brings. Getting bloods done on Tuesday to see if they're ok. Fingers crossed

[AgedCrone in reply to Karalyn53]

Just forget you're taking it & get on with your everyday life !

I'm sure thinking you're gonna be OK is the way to go!

[Karalyn53 in reply to AgedCrone]

I think you're right about that. It's not going to get me down 😁

[AgedCrone in reply to Karalyn53]

Good Thinking Lady K!

[janmary]

Hi Karalyn

I reacted badly to MTX orally, but have been on injections (with pen - easy) for a few years and no side effects. It also seems to work for me, so I'm lucky. Lots of talk about headaches on today's posts, but I haven't (touch wood) had a headache since I started on MTX -they were regular before -...who knows how it all works, but good for me.

Don't anticipate problems, hope it all goes well.

[Karalyn53 in reply to janmary]

Thanks for reply, I'm only on my 2nd dose of mtx so early days, going every week for blood tests so hopefully I'll be fine

[Danna]

All I want to tell you is if you have cancer in your family don't take it, & months later I had lung disease. Make sure you have chest x-rays in about 7 months. My story is a horror story as well. Good luck

[Neverending63]

I was given sulphalazine initially but had major side effects so was swapped to methotrexate, hydroxy and folic acid. I have had no side effects from it however it took a while to get the dose right. Still get the odd flare but generally feel better on that combo. So I say yay for methotrexate. Hope you have a good result as well

[Karalyn53 in reply to Neverending63]

Thanks for positive feedback, early days but hoping for the best

[nomoreheels]

Hiya Karalyn, welcome. Sorry to hear your diagnosis. Your experience was very similar to mine, six weeks after the first signs I was diagnosed though it was my feet which were affected. I didn't start on MTX either, because it was caught early my Consultant preferred the softly softly approach so..... not similar at all apart from prompt diagnosis!! Anyway after a year on HCQ I started MTX.

I've just replied to another member about MTX. If you'd like to read it it's here healthunlocked.com/nras/pos...

I hope you find it helpful being here. There's little we don't know about RD & other related autoimmune conditions between us. 😌

[AgedCrone in reply to nomoreheels]

Isn't it strange though how differently we all react to the drugs?

I thought Sulphasalazine was a nightmare, but a lot on this site find it's great.

I was on Mtx very successfully ...no Flares, felt completely normal for 7 years...then overnight I thought I had a brain tumour ....headaches, nausea,dizzy, felt just dreadful......stopped took Leflunomide for a few months......then similar symptoms....so just had Depo injections until I started Rtx!

So what lies ahead now I wonder???

[nomoreheels in reply to AgedCrone]

I suppose but it's no different with other more commonly prescribed drugs really. The one which springs to mind because it's relevant to me presently is pregabalin (Lyrica). I've resisted this med for nearly 2 years but eventually agreed to it on the proviso it's considered a short term measure in an attempt to relieve long term cervical problems. I started at low dose & now 3 months later after as many reviews I'm on 75mg, it's helping a bit but reluctant to increase the dose, my GP agrees. I start physio this morning & the plan is (how often do plans go awry?!) that physio & any exercises I'm given to do at home relieve the neuro issues enough for me to try titring down. My h had a terrible time on this med & really was not happy about me trying it but so far, touch wood, I seem to be tolerant but I do not want to become dependent, hence "The Plan".

I also had a concerning time on SSZ & even reducing to 1 daily my mood was really low & needed prochlorperazine so it was stopped but only after about 4 months, thanks to my Rheumy nurse & a Registrar who insisted I persever with it despite me saying it really was unusual for me to be intolerant! Many do well on it as you say & I'm not one to give up on something without giving initial side effects a good go, it happens so infrequently, but when all I wanted to do was hide myself away & go back to bed I considered it not to be the med for me.

Fingers crossed RTX is the one that does it for you with no problems, or at least if you do have any they're minor & worth persevering with.

[Karalyn53]

Thanks for reply, feel much more optimistic now

[kambach62]

Karalyn, I did not take methotrexate but, Arava because I didn't tolerate it well. Other meds were also included. Was diagnosed 15 years ago. Obviously, I can not advice you on this. However, I would like to offer some advice. Advice that i didn't heed and now regret. Excersize regularly! I always thought that because I was active it could count. It doesn't! Keep those joints in motion! My other regret is being terrified of biologic. I resisted taking them and now there is no turning back from the damage that has been done. Surgeries are my only option. I started Humira a little over a year ago and within a couple of months.. No more flare ups!! Wonderful! I realize that you haven't progressed and so it wasn't offered. I truly hope you never need it but, don't want you to be stupid like I was. Lol. ... Best of luck to you and God Bless 💚

[Karalyn53 in reply to kambach62]

Thanks for you're advice, fingers crossed I respond to meds.

[Ga55a49]

Hi. I ve not been diagnosed yet but started getting Raynauds and a bloodtest showed something but nothing specific wrong with my autoimmune system. I do some jogging and the balls of my feet burn. I blamed my new trainers but I think maybe it could be RA. I have a specialist appointment coming up. I also seem to get confused alot does anybody else notice this. I feel a bit of a fraud reading how bad some suffer but I am after any information I can get.