NRAS
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Exercise , RA and nsaids ( and mtx!)

Hi.

How naughty is it to take nsaids on a bad day so that you can do some exercise?

Getting frustrated with mtx. Have taken 9 weeks at 10 mg and a further 8 at 15 mg and the same inflammation and pain is just creeping creeping. Does that mean it is not working?

🙁

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Not naughty, but possibly not the best idea. If your joints are actively inflamed and swollen, then overdoing exercise can be damaging. But it's a fine line deciding what pain levels are ok, and actually helping you keep mobile, and what are too much and potentially damaging. If I'm flaring I usually moderate exercise to very simple stretchy sorts of things, and walking, and drop anything more stressful to the joints involved.

I would talk to your medical team about your drugs and ask for a review. 10mg is only just a therapeutic dose, but you should be seeing some benefits from 15mg. So perhaps a tweak is needed.

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It is okay as long as you are well hydrated. NSAIDs can cause kidney damage if dehydrated.Otherwise, it is sometimes essential to make exercise tolerable. Eg., when cycling my hands and wrists were very painful after a while. It is probably safer to rely on paracetamol to alleviate any discomfort in that case. Good luck. Plus, Don't forget the huge benefits of the exercise in the first place, so there might be a trade-off?

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Hi Fig45

I got a email to say I might be of some help with Methotrexate. I have PMR and after 3 relapses trying to decrease steroids the rheumatologist wanted me to use Methotrexate. I put a post on here as to any alternative as it is such a toxic drug. I had a reply from an RA sufferer who recommended Hydroxichloroquine. It is not the usually prescribed drug but it has no side effects and he found it afforded him a fairly pain free existence. I researched it and the rheumatologist agreed to prescribe. I have been on 400mgs since Feb and have reduced down from 15mg to 5mg steroids with no reoccurring inflammation or muscle pain

I also have a niece suffering from RA who now uses HCQ

I hope this might be useful to you

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Were you told to have sight tests more often? At one point it was suggested I went on it, but as there is a lot of glaucoma in the family I felt it was too risky,but glad it's working for you.

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You were advised to have an eye examination before starting hydroxychloroquine weren't you yos72? Contrary to what you were told like most meds we take there are side effects, some can be serious even if rare. In the case of HCQ because of the possibility of retinal toxicity we're advised to have a base-line eye exam & an annual one thereafter. I used to have 6 monthly checks in hospital because HCQ affected my eyes, not retinopathy thankfully but dry eyes with light sensitivity.

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Yes quite right an annual eye exam.Methotrexate on the other hand is more toxic and has more frequent side effects.

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Yes you can take paracetamol & possibly ibuprofen,take with a full glass of water, ibuprofen after or with food, I find with more effective,no idea why! It is a fairly low dose of mtx, but should be helping by now, talk to your rheumy nurse,if you are flaring badly she/he may suggest a steroid injection ( works for me every time!) make sure you drink water after exercise,& keep the strenuous stuff for when you are relatively flare free. Just a quick footnote, I have actually been RA free for 8 months😯😁😁😁😁. Seeing rheumatology next month,will possibly be the last time, unless it comes back!

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If your Rheumy or GP has prescribed your NSAID it's not naughty at all, in fact exercising is good if you can keep your inflammation down. I've always had an NSAID as part of my regime from diagnosis, I'm on my fifth but it's seemingly the best I've had as I've been on it nearly 5 years.

If it's an over the counter NSAID then I'd ask your GP, just to be sure you're ok to take it, he knows your medical history we don't.

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Hi. I've had RA (juvenile) for over 30 years. I've been on methotrexate since early 90s, although I've also been on biological too for about 17yrs.

It helped me a lot in the early days.. But I know it has lots of side effects. 10is a low dose, 15ok.. But maybe you need a kenilog to help quieten down the symptoms while it kicks in? Otherwise try higher dose, or ask for biologics

Don't let joint damage happen if you can! As once that happens, itll be operations.. Which will cost NHS more.

You've given mtx enough time, 3 months is about time.. So either a kenilog or additional treatment needed.

Take care

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It is so nice to hear that you have done so well on methotrexate. I have just started on my 3rd week now . I just worry about what it is doing to the rest of my body . I also take folic acid and have heard it can cause cancers so a bit concerned . Do I have to take the folic acid alway or is it a temporary thing .

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I think for all the time you are on mtx 🙁

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Hi there. You always have to take the folic acid, normally 3 days after the mtx.. To kinda stop it from working too much. It did really really help me, after taking about 4 treatments that didn't, but do remember that things have moved on a lot since the early 90s!. There's a lot more stuff out there now that can help you, so if you do get side effects, or it doesn't seem to be making a difference.. Tell them. In fact shout it to the rooftops! As they didn't have anything good enough to stop it damaging me.. in the 80s, so am now up to operation 16... So my biggest advice to anyone is don't be a matyr.. It doesn't help anyone, especially you!. So yes mtx can work, but it does have side effects.. Although many meds do, so give it a fair chance. The absolute worst thing, even more than what you think this could give you, is having raging arthritis that kills all your joints.. RA needs to be stopped in its tracks. Mine is OK now, although I have a lot of damage.. I make sure I go for it and enjoy life when I can. Really hope this helps. Have you just be diagnosed?

Jo x

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Hi there. Thanks for this. Yes fairly recent. About 15 months but spent about the first half of that treating it as if it might be reactive not rheumatoid. Sadly not 🙁🙁🙁.

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Definitely all the time you are on methotrexate. It helps minimise side effects. I take it about 18 hours after the methotrexate and then daily until the methotrexate day.

You also need to take b12 daily as methotrexate can drop that. Some rheumatologists tell you but my pharmacist told me. It also helps my fatigue and blah feeling.

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I was asked to put my own experience on MTX

I have SLE went on steroids for temporal arthritis

Had a flare up so Rheumy put me on MTX all I can say it did help.

I also take hydroxychloroquine or plaqunal

When I came of steroids so no longer needed MTX

For those that find exercise difficult it is all about balance, tho I know if I go hell for leather one day I suffer from that evening for about 3 days

I'm 66 and had Lupus all my life, it is depressing but I try to keep a positive outlook, I read with interest someone mentioning fad diets All I can say that it has taken me a long time to understand what I can and cannot eat. I try to eat a clean healthy diet shy away from processed foods, I cannot eat red meat, wheat or yeast products, I had tests done because I took allergies to virtually everything.

MSG is also a big no no as is caffeine and soya beans mung beans So I would say yes I'm on a diet but one that suits my body and reduces pain and inflammation.

I also find if I keep my weight in check that helps my joints.

After my second stint on steroids I did put in weight nobodies fault but my own So I joined Slimming World and now I am back to my regular weight. I don't know if this helps anyone. I can only tell you my story

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Hi, I've been on mtx for over 10 yrs. I started on 10mg (along with ibruprofen) and as the yrs went by my RA settled and the rheumatologist reduced it to 7.5mg. This had worked for me. Starting on mtx does take time to work, it's not a quick fix therefore when I was started on mtx I was also given a steroid injection at the time to help with the pain. It's important to ensure that you take all meds with food to prevent any long term damage. How is your blood test results? if you have only been taking mtx for 9 weeks it's quite a short period to notice any significant difference. However if you not happy with mtx and feel you relying more on the ibruprofen to help than definitely go back to the rheuamatologist and discuss your concerns.

Regarding exercise it's so important to exercise everyday even if you can only manage 5-10mins a day. Consistency is vital!!! I unfortunately learnt the hard way..... I did not do any exercise for my joints as they were too painful in the beginning and no one stressed the importance of exercise. I have therefore developed muscle wastage in my one leg and foot is so stiff that even with physio trying to reverse yrs of damage is impossible. However I've learnt my lesson and now exercise my joints every day (strengthening exercises for my muscles).

These are jus my experience with mtx and exercise. Mtx has really worked so well for me. Hope this has been helpful.

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You will have to mention this to you rhmy nurse,then she will put you in touch with your speacialist xxxx

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Thanks all 😀.

I am on quinoric already as well. I am at the rheumy next week so will see what he says re response to mtx. I am kind of disappointed if this is as good as it gets.

However on the using nsaids to exercise it sounds like one of those (endless ) things that you wouldn't do normally but would do if you have ra and it keeps you exercising. All seems to point to taking after not before exercise so you do at least notice if you are doing damage via the exercise itself.

So glad for the responses as , natch, I had already done it and was panicking 😂 !

Take care

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I am on a combination of MTX 12.5mg pw and hydroxachloraquine 2x500mg pd for 3 years and they have got my tendon my pain under good control, although it took 6 months to really take effect. My main problem is fatigue and I find that if I push myself too hard the pain returns, albeit for a day or two. I have learnt that us lupies have to pace ourselves to control the symptoms!

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HFg45. I have just finished my final dose of Methotrexate and it did the job and helped my bones heal a bit and as I had been on the full time allowed I have had a infusion to coat my bones and protect them.I was worried about the drug after reading things about it but I had 20mg a week and it took a good few months but then I started to feel the benefit and I gradually got my steroid levels down and after about 3 years I came of altogether, I never once had a problem with the drug apart from the tablets I took and had to sit up and they made me sick so I changed to a 6 monthly injection and it worked on the bones so keep at it it does work, I was also on tramadol and prefers Lin and paracetamol to help with pain.

Hope it helps and best of luck .Mick

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Fg45,

I have been taking methotrexate for dermatomyositis since January 2016, first 15mg./week and now 10 mg. My side effects (now much improved) included dizziness, muscle weakness, and particularly a worsening of soreness round the eyes (Sjogren's Syndrome). I am on folic acid 20mg./a week reduced from 25 a few months ago. I have not had painful muscle inflammation as such, but if you have severe symptoms I would suggest you increase the folic acid (with medical advice) as it helped the side effects in my case.

Michael

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I've been on methotrexate for 22 years. I take prescription Motrin almost daily. My rheumatologist prescribed it because my liver function goes crazy with just one Tylenol. I'd suggest light exercise on days where you're having a lot of joint pain or none at all. While it's important to continue exercising, it's also important to listen to your body and rest joints when needed! Overdoing can cause more harm than good! And if pill form doesn't work for you, try injection form. You have to figure out what works best for you with your physician, which is unfortunately sometimes a process! Good luck to you!

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I haven't been on here in quite a while because of surgeries, 6 since January. I have ra and I took methotrexate and it helped me a lot But I believe it caused me to have a perforated intestine. I ended up having a colonoscopy and then having it reversed and because I had scar tissue blocking the path for me to go to the bathroom I ended up with an ileostomy so the colon could heal. I am now free of any osteomyelitis bags and a scarred tummy but alive. I don't take anything except advil gel caps if I have joint pain with swelling. I am hesitant to take any of the ra medicines because they can cause perforation in stomach or intestine, rare but still there. My rheuma wanted me to try hcq but you have to get an eye exam first because it can cause retinal issues. No thank you, I suffered 2 detached retinas about 15 years ago.there are a couple of injectable ones that I would consider but even with medicare they would cost me $200 a month. Right now the advil is helping. My advise would be to read the fine print on everything. I know that while the advil helps with the pain it does not stop the progression. Sorry this is so lengthy but I want you to be aware of the risks

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Hello,Try 2 30/500 Co_codamol and 3 300 mg Aspirin tables together every 4 hours or when required.

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I would say for me methotrexate took 6 months to kick in but when it did it was a life saver

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Fg45

NSAIDS can be very useful to reduce inflammation. If taken at full doses regularly you need Omeprazol to protect your stomach - see your GP.

I was on a high dose for months, no side effects but lots of benifit for my hands.

10mg MTX is too low. My consultant started me on 5mg from week 1 ramping up to 15mg on week 4 then 15mg forever.

I had some nausea for the first 2 or 3 weeks, but zero side effects the last 3 years.

It took AT LEAST 12 weeks at 15mg to see some benefit....but now 3 years later I have zero symptoms and very low inflammatory markers in my monthly blood tests. Try to be patient and stay positive.

Take the drugs correctly as prescribed. If in doubt talk to your Pharmacist who will refer you to your GP if required.

There is a lot of nonsense and scaremongering about drugs. Ignore it all and ask lots of questions at your GP/Consultant appointments. I find it handy to write down questions before appointments, so I don't forget anything.

Regards

Paul

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Very helful thanks.

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Thank you for that helpful information Paul. I've been on 20mg for 6 weeks & getting inpatient but your post is very encouraging 😊

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Doesn't everybody? Of course they do...not to run a marathon, but some gentle stretching & walking is good to get your joints mobile.

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I don't know. That's why I asked.

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Hi Fg45,

I did use both MTX tablets and metoject. Upto 17.5mg.

However when on it, I never particularly noticed much improvement from using it. The side effects it caused me of quite severe distress to my stomach and digestive system outweighed any benefit of taking it. Although I was on it for a year and a half, I was in more pain at the end of using it than I was before I started. Therefore changed to the next 'round' of medication.

At the beginning my Rheummy didn't prescribe neither Folic acid or Omeprazole to companion the MTX doses. After 'fighting' with the stomach issues, my GP finally prescribed the Omeprazole reluctantly as they believed it was the Rheummys responsibility to prescribe anything related to the arthritis. Albeit this wasn't enough to counter the MTX reactions.

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Hi, I've been on MTX 10 years, then had a 5 year break now back on for 2 years. When I first went back on it I was given a course of steroids to settle my RA down to give the MTX time to work, if you can I would ask for a short course of steroids or if it's just one joint then a steroid injection, works wonders. I still find day 7 before I'm due to take my weekly dose of MTX I have a few aches and pains, but personally I'd rather have 1 achey day than increase my dose. I don't take any pain killers.

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