Still considering whether to start on Methotrexate, t... - NRAS

NRAS
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Still considering whether to start on Methotrexate, trying to weigh risks of drug side effects vs managing through diet and exercise

Fall18
Fall18

I was diagnosed with RA in 1995, I am now 63. My blood indicators have always been extremely high but I displayed no outward sign of the disease (no erosions or loss of mobility). I had intermittent flare ups that would last a day and then disappear. My rheumatologist wanted me to start on Methotrexate back then, but I refused since my brother has RA and I see the toll the drugs have taken on his body. I know that RA is different for each person. I was a very healthy and active person, running, going to the gym and eating right. It made sense to me to refrain from starting on treatment since I was so well.

Unfortunately, things changed about a year ago and my xrays showed some erosion in my fingers and wrists. I agreed to start on Hydroxocholoroquine. I was on it for about 5 weeks and felt extremely nauseous, developed a rash on both my legs and had substantial hair loss and felt no better. I can now visibly see the joints on my hands becoming enlarged and am scared that if I do not start on Methotrexate I will become deformed.

My questions are:

- has anyone seen positive affects from taking Methotrexate, no further erosions or flareups?

- what side effects did you experience?

- did you have to take additional drugs in addition to Methotrexate

Thank you so much for any guidance you can give. I really appreciate it

33 Replies
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Hi, I was on MTX never felt well the whole time on it ! Then I had to come off it owing to the drug affecting my liver x I can no longer take it for that reason ! But fortunately they keep a close eye on your bloods to make sure no damage is done x For me personally I would take whatever the Rheumy advised, as my anti ccp blood results were so high! And I was in agony everywhere x there is no doubt I would have been disabled without treatment x I have very aggressive Sero Positive RA x I cannot think of long term it scares me!! But for now the drugs I have been on for 2 years have given my life back (for now?) Good luck in your journey ! I guess it depends on how much pain you are in x Hope my story helps 😘

Fall18
Fall18
in reply to Doughnut61

Thanks so much for your quick response. I have intermittent pain and when my physio exercises don't relieve it, I take 1 Naproxen and am fine. May I ask what drugs you are now on?

Again, thanks for your support.

Doughnut61
Doughnut61
in reply to Fall18

I am on Hydrox and Sulpha and it seems to help a lot x

I have been on Methotrexate for 8 years. It has been my best friend. Once I got used to it I have had no side effects, and it kept me in a largely erosion free remission for 5 yearswith very few flares (and which were usually my fault for doing stupid things). I did end up taking hydroxy and sulphasalazine alongside it, but the combination worked for me.

Unfortunately pesky disease has broken through that drug cocktail so have just changed to MTX + biologic and am hoping that will work.

But remember you can stop a drug just as easily as you can start it.

Fall18
Fall18
in reply to helixhelix

Thanks so much for the advice. You're the first that suggested that I can try and stop it. May I ask how long did it take you to get used to it and what did you have to get use to?

A big thank you for your advice.

helixhelix
helixhelix
in reply to Fall18

I discount week one as I was so terrified of taking them that I made myself ill with the stress of it. After that I felt sick & tired the day after for the first few weeks, getting less every week. My rheumy started me on a lowish dose and built up which I think helped. These days i just have an extra hour in bed the day after and I'm fine.

what was the silly things you did helixhelix if you don't mind me asking?

Worked 12 hour days, stayed up too late, forgot to eat proper meals - that sort of thing.

I too was very healthy & active when I was diagnosed....I started Mtx ..about 6 years,after diagnosis. I took it for 7 years...had no problems but then did have side effects In the last 6 months., I feel it was well worth taking.I was around your age when I started taking it, and I avoided any joint damage.

I ended up on 20 mg, no nausea or other side effects for 6.5 years.

If you don't take a Dmard now, presumably your erosions will become worse & be irreversible? Ask your Rheumy.

Don't expect what happened to your brother will happen to you, In fact don't expect anything except to feel better.

I have only ever taken one Dmard at a time....there are plenty more if Mtx turns out not to suit you.

I still have very little joint damage & am now on RTX & doing well.

I'm sure without those 7 years on Mtx I would be in a much worse condition joint wise.

I now have very little pain, & lead as good a life as my peers without RA.

But all the above was my experience....The only way to find out if Mtx will suit you will be to try it. The sooner you try, the sooner you will know & if it doesn't you can move on to another drug prescribed by your Rheumy. I had tried quite a few before Mtx,

If I were you I'd definitely give Mtx a try, Take it at night with plenty of water, & then forget it. Take the Folic Acid as your Rheumy recommends .....most take it every day except Mtx day.

I hope you go ahead & succeed on Mtx.

Fall18
Fall18
in reply to AgedCrone

Thanks for the advice. I feel much better informed.

on no fall18 I am thinking of going on Hydroxocholoroquine, Iam a bit scared of the hair loss you said and sickness

good luck with mtx hope its better for you

Hidden
Hidden

Didn’t suit me but as above, everyone’s different. Thing is I believe you have to have failed MTX and one other dmard to get biologics so might be worth trying for that reason? You can always stop if no good x

I'm seropositive, diagnosed 10 years & it's been the best DMARD for me. Having tried hydroxychloroquine for a year & that failing I was then prescribed methotrexate. I started on 15mg tablets with just one folic acid the day after. I started having a little hair loss (as I did on HCQ) but it settled. I've been on injections for 8 years, currently 20mg, folic acid 6 days just not MTX day, my Rheumy preferred choice for her patients. Folic acid is prescribed to help ease any side effects you may have. Nowadays I'm just a little more tired & have less appetite the day after so I try not to arrange anything important & just graze rather than have a proper meal.

I used to take my tablets spaced out with meals, so 2 tablets with breakfast, lunch & evening meal. My Consultant recommended I did this & it worked for me, not as big a hit on the body as taking the full dose all at once. I was advised against taking them at bedtime just in case I was ill in the night, he considered sleep very important for his patients!

I started having increased DAS scores so I tried double therapy with sulfasalazine & leflumomide but neither were right so I remain on just the MTX & low dose steroids.

Unfortunately our meds don't come with guarantees so there's no saying how you'll respond or if you'll experience any side effects but MTX is considered the gold standard med for RD. It's not only available in tablets but as I said also injections. If you do have certain side effects, nausea, hair thinning, the option is to try injections which are generally better tolerated or stop itm & try one of the other DMARDs. Unfortunately, as you appear to have seen through your brother, the meds we need to take to control the disease are quite hefty, they're certainly not paracetamol & because of this the side effects can be a concern. Thing is though you don't know how you'll respond until you try, with any DMARD, & it does sound as though you're starting to need something more robust than HCQ. This might be helpful reading nras.org.uk/getting-establi...

I hope it works as well for you as it does for me & any side effects are only those you have until your body gets used to it. Similar to HCQ it doesn't work immediately, it builds up over a while but you should notice some improvements within a few weeks, increasing as the MTX starts working fully.

Fall18
Fall18
in reply to nomoreheels

Sorry for the delay in responding. I've met with my rheumatologist again and have had bloodwork and xrays necessary before I start Mtx. My next appointment is at the end of November when if all is well with the results I will start on Mtx.

Your advice was very thorough and very helpful. I'm going into this adventure with a positive mind that I will be on the road to remission, even if it is a little bit bumpy.

Thanks again for taking the time to help me. I hope that you continue to feel well.

Hidden
Hidden

Hi

Didn't suit me at all. But none of the dmards did. I did feel it was worth giving it a go though as I was in great pain with lots of swelling. Don't feel you hsve to stay on it if it doesn't work. There are other things to try.

Good luck

Fall18
Fall18
in reply to Hidden

Thanks. Hopefully I'll have positive results.

I started on MTX 5 months ago. I was very anxious about starting and imagined all sorts of issues. I take 15mg with 2x Folic Acid the day after. I felt a little spaced out and tired a day or two after taking it but I'd say after about 6 weeks that completely disappeared. I take it at night and then go to bed to sleep off any side effects.

I didn't see much improvement at first but then suddenly at 12 wks my swelling started to subside and the pain lessened - I wish I'd tried it earlier!

Remember you can try it and stop at any time if it's not for you but try to give it at least 12 wks to take effect. Best of luck

Fall18
Fall18
in reply to Anikins

Thanks so much for your post. When I start getting anxious I re-read your post to try and stay positive. I'll let you know how I get on.

Anikins
Anikins
in reply to Fall18

I hope it works for you. Take it at night and you will likely sleep off any immediate side effects. MTX has given me some normality back and I feel healthier than I have done in a long time. Wishing you all the very best x

I've taken MTX for over 35 years and its been the best drug for me. I started it when I was 16-18. I do have lots of joint deformities, that have required and still require surgery, but I was dx in 1971 as a child when there were no biologics.

Fall18
Fall18
in reply to BoneyC

Thanks for your post. I hope that you are feeling well.

I take 3dmards and biologics and no side effects. There's some very interesting research about why RA is treated aggressively. Can't recall who by though! It was a longitudinal study and people that were retreated aggressively who had few symptoms did much better than people that weren't. It said that people that perhaps had it in a single finger joint, without the mtx etc...had terrible problems 20 years later and some ended in wheelchairs. If I can find it, I'll post it back here.

Fall18
Fall18
in reply to Cwendyn

I'd be very interested in seeing the study. My rheumatologists have said something similar to me for years.

Hello there. You may find actually talking to someone who has their RA well controlled by methotrexate. Our NRAS Helpline can arrange for you to have a chat with one of our trained telephone support volunteers who can share their own experience of taking methotrexate. If you'd like to avail of this free service call 0800 298 7650. You may also find the informative videos on the topic of methotrexate on the website helpful nras.org.uk/methotrexate

Hope this helps

Clare

Fall18
Fall18
in reply to Clare-NRAS

Hi Clare, I have spoken to a volunteer who was very helpful and open about her experiences with RA and meds. Having HealthUnlocked and NRAS has made a world of difference to me. It is great to hear from people who are experiencing the same things as me.

Many thanks

Hi, I've been on MTX since 2010. Since switching from tablets to injections, the nausea has diminished drastically. I am quite happy to put up with nausea knowing that MTX really helps me. No other side effects. I did take Sulfasalazine, but don't need them any longer. For the last five years I'm also on CIMZIA. Again no side effects. My attitude is that if the benefit of the drug outweighs the side effects, then I'll embrace it totally. All the best.

Fall18
Fall18
in reply to stbernhard

I totally agree with you about benefits vs side effects. Keeping a positive mind that Mtx will work for me. Many thanks

Hi Fall18 I was on methotrexate for 3 yrs I had to come off it due to feeling terribly sick most of the week after I took the pills I switched to injection but I still felt rough so I came off it I told my Rheumatology doc that it didn’t help how wrong was I this year has been the worst pain is unbearable most of the time I’m having fare up after flare up and I’m wishing I stayed on methotrexate now .......hope this helps let us know how your getting on !!!

Fall18
Fall18
in reply to lise78

Sorry to hear of your experience. Can't you go back on Mtx or a biologic to help with your flare ups? Wishing you all the best.

I take plquinil I couldn’t tolerate mtx and I was very scared of the lung risks. I have been using braces for my wrists which helps some.

Fall18
Fall18
in reply to Paulajane1

Thanks for your post. Wishing you well.

Hello Fall18

I understand so well your doubts. Especially as you have followed what effect the meds have had on your brothers body. RA has so many different faces and different ways of progressing. You were diagnosed really many years ago and have managed nearly without meds this far ( 1 Naproxen is nearly nothing). RA has very different erosive qualities as well. Aggressive RA gives bad erosien during the first three years. Evidently your RA has been quite mild with little erosion so far. In my view you made the right decision not taking MTX when diagnosed. Managing without hard meds as long as you can is in my view sparing your body from the ill effects of the meds ( this cannot be disputed). We also know that MTX works for a limmited period whereafter you need to go on to biologics and so on. The later you start the better ( my personal view ).

Your situation today seems to have changed, you have more erosion and pain and I think you need to think through your situation thoroughly before you make the decision.

Like you I chose not to take meds, when diagnosed three years ago. Even though I haven't been as lucky as you I'm still continuing the same route and I have so far not regretted my decision.

Best of luck to you in your search for what is right for you. Simba

Dear Simba, thanks for your advice. Since my post, I've been under a lot of stress and you know what that does to flare ups. I've decided to give Mtx a try and hope that works for me. I'll let you know how it goes. Many thanks. Wish you all the best

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