I have a fairly bad flare up at the moment - left foot, knee ,hip and right wrist. The consultant wanted to put me on methotrexate but I'd heard bad things about it so I refused. Instead I had a steroid injection which did nothing at all.
I take 1 or 2 tablets of diclofenac a day but I'm thinking i should try something else without the risk of stroke or heart attack. How do people feel about naproxen? I am the main carer for my grandson so I want to be around for as long as pos.
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Kalimers65
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Non-steroidal anti-inflammatory drugs such as diclofenac and naproxen are associated with a higher risk of cardiovascular disease. They also do not tackle the damage caused by Rheumatoid Disease to the joints, but do relieve some of the pain and inflammatory response.
Methotrexate is regarded as an effective joint protector in auto-immune disease. Have a look at the NRAS website on medication to get a sense of what medication is available and what the risks are.
All drugs that work have side effects - you have to decide for yourself the balance of risk of harm against benefit for each medication.
I took naproxen for years (I don't know anything about diclofenac). It is very effective for the pain and stiffness (I was taking one dose of Naprosyn 750mg/evening so as to wake up without stiffness). With that I took Omezaprole to protect the stomach. When I came off the Naprosyn I stopped the stomach-protector too, and shortly afterwards developed gastritis. I think it was stopping the Omezaprole that gave me gastritis (acid rushing back after years of being kept at bay) but my stomach never felt right when I was taking Naprosyn.
With hindsight, I would definitely not have taken this combination for as long as I did, I think they have done a lot of damage to my gut. I also had a stroke a few years later. But I was on high-dose Naprosyn for years! (I do wonder how come my doctor kept on filling out the prescription, didn't he know?) .
It's difficult to say if the meds were responsible, but I feel that they were, certainly for the stomach problems. I took Naprosyn in preference to Methotrexate etc, because it seemed less scary, but I used it for too long, and finally it was probably more dangerous than any of the others would have been (especially as they are closely monitored). Also, as my rheumatologist pointed out, untreated Rheumatoid Arthritis is itself a cardio-vascular risk! (I don't know to what extent the different treatments diminish that risk, that's another question). Oldtimer's advice is very sound, but I know what it is to not want to take the medicine!
I don't know what to suggest for you, as I'm in a similar dilemma. I don't want to take the RA drugs because they scare me, and can't take anti-inflammatories anymore. I have been on a no-gluten, mainly dairy-free diet for years and it seemed to be working, to the point that I was totally drug-free for many years. But for some reason it has stopped working, the flares have come back and i'm in pain again! (This happens with drugs too...) I have finally given in to the idea that maybe the disease is more harming than the drugs (which DO have harmful side-effects, nobody can deny it, but some people don't seem to suffer from them and benefit enormously). I will be trying Arava when I get up the courage. (I tried MTX and couldn't take it...)
Sorry this is so long - your post resonated with my own problems. Good luck and courage to you.
Thanks a lot Jo for getting back to me an d your reply wasn't too long at all. This forum is great . 27 years ago when i started with RA there was nothing like this and life with RA could be very bleak and isolating.
I'm very fortunate that some of my remissions are long, my last one was 12 wonderful years. Ive been on diclofenac with this flare up for just over 2 years. How long were you on naproxen?
Hmm, how long was I on Naprosyn? I would say about 5 years, maybe a little more but not much. Two years is already quite a long time. Do you have a friendly GP or rheumy you could talk to about the dangers of nsaids?
Many people take MTX without any problems and you are regularly monitored. Often you only hear bad things about drugs from people who have had issues with it as the ones it has worked for having nothing to tell. It is not only about being around as long as possible as any damage done to joints is irreversible and over time this will cause their own problems. I second having a look on the NRAS website for available meds.
Naproxen is the more preferred prescribed of the two, of all the NSAIDs diclofenac is the one least likely to be prescribed unless it's considered the only appropriate med. I had need to go to A&E the other Friday & once I'd had all tests to rule out things & diagnosed what the problem was I was given 2 diclofenac plus another med, kept an eye on for an hour & then discharged with another 3 days worth. I'd told the Cardiothoracic Consultant I had a prebooked appointment with my GP on the Monday & she accessed the hospital records & prescribed more diclofenac but warned to only take them if the pain peaked again. All NSAIDs should be coprescribed an a ppi (omeprazole or similar) & taken with food if possible. This is to help prevent stomach ulcers & possible oesophageal issues.
Diclofenac is being prescribed far less than it ever has because of the risks associated with it. Because of recent events I've been reading up on it & some countries in Europe are considering striking it off their drugs lists, leaving only diclofenac gel available. One large 10 year trial in Denmark found that use of any NSAID was associated with a 31% increased risk of cardiac arrest. Diclofenac was associated with a 50% increased risk, ibuprofen was associated with a 31% increased risk of cardiac arrest. The study author recommends "not to take more than 1200 mg of ibuprofen per day. Naproxen is probably the safest NSAID, we can take up to 500 mg a day. Diclofenac is the riskiest NSAID & should be avoided by patients with cardiovascular disease and the general population. Safer drugs are available that have similar painkilling effects so there is no reason to use diclofenac.”
Methotrexate is the only DMARD that's successfully kept my RD at bay, 9 years now with very few side effects, just less appetite & more tired the day after I inject. Also if you do have side effects it's the one DMARD we can take folic acid alongside, intended to ease the more common ones, low folate as MTX is a folate antagonist, whilst it can work on RD symptoms it also reduces our folate levels so we supplement with the folic acid. I take 6 tablets 5mg a week, not MTX day. It's considered the most effective DMARD after diagnosis, used more than any other because of it's targeting of the cells which cause inflammation & in turn damage. If tablets cause issues it's also the only DMARD available by injection, often better tolerated if side effects continue. I've been on injections 8 years.
I'm afraid only taking NSAIDs (& the odd steroid injection which have bad side effects of their own, this is why they're often limited) won't do anything for the disease so you should really discuss you options with your Rheumy, but if you want personal experience I'd take it over any other DMARD, & I've tried 3. I'm considered higher risk for cardiovascular issues not only through the disease (RD can have affects on our vital organs too not only our joints), I have family history both sides but fortunately whether through protection or being able to keep my RD pretty well controlled my annual CV checks have been fine.
Please discuss this with your Rheumy, he'll have many years experience behind him & be able to advise what your treatment plan should be. Try to reach a happy medium I think that's the thing, but be aware he won't prescribe anything unless he feel it necessary. If you want to be informed before your next appointment maybe reading up on the most commonly prescribed DMARDs would be helpful, the following are from the NRAS website
I was started on methotrexate in tablet form, 8 every Monday, had to write off the next day as felt so sick. Returned to hospital and was put on same drug but by injection, once a week, so simple and feel much better, got my life back
Been taking Methotrexate for nearly 10 years now and only issue I have had is nausea when I was on higher doses than I am now. This nausea was helped by experimenting with the time of day I took it and what I ate on the day I took it. For me taking after breakfast and a large meal at lunchtime helped.
For me it did stop being effective on its own after about 2 years and now taking Humiria and methotrexate.
Kalimers65, I’ve taken both of those for my osteoarthritis and found that neither one helped with the pain. The naproxen I was taken was 500 mg 2 a day . I’ve yet to find anything to help mine. Now the pain is in my spine and has gotten worse. I told my gp the diclofenac hasn’t helped either. At this point I don’t know what I’m going to have to do with mine. Good luck.
It sounds like you need a pain relief review JDQ. My OA pain is pretty well controlled now but it did take some time to get it there. A combination of NSAID, pain relief & neuro/muscle meds has very nearly got me to the point I hardly remember it's there except for nagging DIP joints occasionally & stiffening in the evenings, solved by not sitting all the time & by walking around regularly.
I hope you can find something, I remember those sleepless nights, they can really get you down.
nomoreheels, I’ve told my gp several times something needs to be done and he’s not doing anything. At this point I’m going to be my own doctor. Some days I can barely move do to the pain in my knees, feet or back. Some days fatigue sets in and makes it worse as well. I’m sick of trying to find something that helps me. My spine is very painful anymore and eventually moves to my legs afterwards. I give up trying to find something that helps.
As I've said to you before, do please take up the offer you had of physical therapy. It can work wonders, and be as effective as pain killers if not more so.
I'm afraid if my GP wouldn't help then I'd be changing. OA can be terribly painful, one time I couldn't distinguish it between RD & OA pain until my Rheumy showed me the difference in the two types of inflammation. I also have Occupational Therapy & Physiotherapy for OA, I'm also given excersises to do at home, all go to help manage it. Sometimes when we don't get what we need we have to shout a little louder... or change GP's.
I haven’t gone through OT or PT for my OA as of yet. The only Dr that has suggested me go through pt is my neurologist when I told him about my sciatica nerve bothering me. The only reason the sciatica nerve is bothering me is because my lower spine signs of deginertive in my lower back.
Thanks nomoreheals. My GP is v good. I'm the problem because i was brought up in a family that rarely took any meds and was suspicious of them. I'm going to see my GP after i have a good read up of all the info. Thanks for yr advice.
Sorry Kalimer, the reply was for JDQ, it's her who has issue with her GP. I realise you get an alert to replies it being you who initiated the post but if you check beside username it says who the reply is to. I find it confusing & I've been here a while! I'm pleased you have a good GP though, I have too, it helps lots.
Please don't think of yourself as a problem. If you need medical help then that's as it is, that your family has been fortunate to rarely need meds is good but now you have. Be guided by your Rheumy, he's the Specialist in your condition.
Yes I've just realised I've been sending replies incorrectly! I'm going to get an appointment this week ( hopefully) and talk things thru with my GP. Thanks a lot for your advice.
The thing to remember is that we are all different, so one person's horror story is another's miracle drug. Unfortunately there's no way of telling which it will be for you until you try it. But if a drug doesn't suit you then do remember you can stop taking it at any point you like, no-one can force you to take a drug against your will.
So if you want to be around for your grandson, and be able to play with him, lift him up and kick around a football then I would seriously urge you to talk to your doctors about trying a DMARD - a disease modifying anti-rheumatic drug - like Methotrexate, sulphasalazine or hydroxychloroquine.
I've been taking all three for 7 years now and am generally in remission. Perhaps you won't be as lucky - but equally perhaps you will?
MTX has been great for me. I was one of the first to go on it for RA and have taken it for over 30 years. I was dx with Stills Disease in 1971 but they've called it RA ever since. I still have lots of joint damage and metal work, but I can only imagine what the damage might have been without MTX.
I've also taken various NSAID's for 47 years, most of that time I was not prescribed a PPI either! Indometacin was my favourite for 30 years, but that's gone out of favour nowadays. Some I found didn't ease my pain, but I am currently prescribed 500mg Naproxen twice a day. Most days I only take one tablet, to try to help my stomach and liver. It's a balance, take enough drugs to combat the RA but not too much to mess up your stomach/liver.
It sounds as if you have only remembered what you have read about the people who have major problems with Methotrexate? Lots of people remain on it very successfully for many years. I was on it for 7 years & sustained no further joint damage & had few flares. I have no regrets about taking it. If your rheumatologist has suggested you take it he obviously thinks it is the Dmard most suited to your situation.
Why not talk to your rheumy nurse about reconsidering.....the nurses can usually give a more personal explanation than the Consultant. However Mtx is not a painkiller, so also ask about something for pain, as the steroid injection did not help.
As for Dicolenac.........I found even taking Lanzoprazole as a stomach protector it caused major problems. Naproxen does help, but as it can have CV side effects I prefer not to take it.
However, we all have to take the personal decision about our medication & the above is just my experience.
I do hope you find meds that you feel you can accept very soon.
Thanks for taking the time to get back to me. I had hepatitis A when I was 20 so I'm wary about taking any strong meds that might affect my liver. I'm trying to follow Margaret Hills' advice too or get a compromise .
You can take Mtx by injection....that should solve any problem with your liver.
But DO really consider taking a Dmard. I was on one( a few actually) for 16 years before I started on a Biologic,& thank goodness, I still have no serious joint problems.
I have been on methotrexate and hydroxychloroquine for over 10 years - just recently I have had my dosage reduced from 20mg per week to 15mg as my blood tests currently show stabilisation. I believe my symptoms are aggravated with stress and I finally retired last year.The medication has kept my symptoms manageable and the flare-ups I have had have not been half as severe as prior to going onto Methotrexate. My consultant tried another drug first (I forget which one but it didn't agree with me) then methotrexate. I have found a brand that doesn't affect my stomach in quite the same way as others - slightly milder effects. However I have had to change the chemist I use as their supplier no longer stocked the brand. Unfortunately one of the drawbacks of chemists no longer being family run establishments. I am now using a chemist which is still independent and can use any supplier they choose. Hope this is of some help.
Meant to say manufacturers. I am only able to tolerate those manufactured by Morningside Healthcare Limited. I have no idea why. If your chemist tries to tell you that they aren't able to obtain them then you will probably have to find another chemist. My former chemist tried to tell me that Morningside had gone into administration!! That was when the internet was really useful. Phoned up Morningside to find out if it was true.
Never been on methotrexate, was put on sulphasalazine, has been working well for me. Supposed to a more tolerable drug, but everyone reacts differently. Plus side is I can still have a few drinks if I want to.
I have been on Mtx for nearly a year and can honestly say it was the best decision. I also had Hep A as a kid but they test the liver beforehand (exhaustively!!) and then fortnightly (to start with). So providing you are being monitored you should not worry. I recommend giving it a go.
With the type of flare up you describe, my doc put me on prednisone which decreased in dosage after one month. Then I was off it. It worked wonders. I find diclifenac does not help at all. I was on methotrexate. My rheumatologist said tho the side effects listed are terrible she has not seen anyone get serious effects in her 20 years of experience. I'm in US but obviously the meds are the same. Unfortunately it didn't work well for me.
I hope you find relief very soon. I was on Methotrexate for about 25 years, both pill form and injection. It worked great for me and still does. If you go on it, make sure the blood work is done, in the which I’m sure your Rheumatoligist will see to that, and usually if One begins Methotrexate in the beginning they usually check it monthly.
A little while back I was prescribed Diclofenac 75 mg twice daily and it came with a warning, I’m not sure if it was just for me or not, but the prescription said “Do not take with Prednisone or other nsaids”. The doctor told me I should not take it on the same day is all, and that it would be too hard on the liver. Maybe check out “ Interaction Checker” on the internet, I’ve found it to be very helpful, because some of us do take a lot of meds and the more we can find out about what we take maybe the better off we are.
But please keep an open mind as there are many meds out there that work, and what works for one person may not work for another.
Keep Looking Up!!! You’ll get better, just takes time.
Thanks Brian. 25 years on medx and you sound very positive and well. I take 50mg diclofenac most days but as I look after my grandson I want to be around for as long as pos. He's 7 now.
I’ve suffered from RA for over 20 years, 2 years ago I was rushed into hospital with a heart problem the first thing they did was take me off diclofenac, I’ve read about people with undetected ulcers etc having real problems with this medication, I’m sure some will sing it’s praises but that’s the way it goes.
Been on methotrexate for 15 years without a problem, was on sulphasalazine in the early stages hated it makes all your bodily fluids go yellow, not sure it helped me glad to come off it.
My advice would be take as little steroids as you can get away with, I think it’s a good medication to get you out of trouble, take it for a long period of time and you could end up like me with induced diabetes.
The problem is we are all different and there isn’t one quick fix, what suits me may not suit you, it’s a case of suck it and see, with all meds you’ve got to give it a chance to work, if you end up on the strong biological meds they work well with methotrexate.
After over twenty years I’m now in a good place, I’m playing golf tomorrow I play at least twice a week, I have my problems like you there are times when I’m unable to do these things, but try and be positive and hopefully things will get better for all of you.
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