I've a Rhuemy appointment this week and was hoping for some advice. I've been taking Sulfasalazine since January along with Naproxen. Over the last few weeks I have experimented by omitting the Naproxen to see if the sulfasalazine is working. The results have been extreme pain and stiffness. Does this suggest that the Sulfasalazine isn't working for me? Or that I should always take Naproxen? You see to my thinking if the Sulf is working I wouldn't need to be taking the Naproxen. Or am I wrong? Have any of you advice or experiences to offer me?
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gwynedd
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Sulphalazine isn't designed as a painkiller but it it works as an autoimmune suppressant which in a roundabout way should decrease the pain. Naproxen
is an anti inflammatory which reduces inflammation i the joints . I take both plus a stomach calmer to go with the Naproxen.You can take paracetamol too if you have inceased pain but don't exceed the daily limit. Before Rutuxanab I took all of this but I'm now cutting down and hope in time to be able
to give up the pills for just the infusions. Well that's my aim!
That's my aim to be able to cut out the Naproxen. Maybe I should try a gradual decrease in Nap, I assumed that if the sulf was working then I wouldn't need the anti inflammatory. I'm relatively new to all this and still trying to find my way
Jackie I am wondering if you are on methotrexate? I think I will have to continue this once I am on ritux. I am hoping I can reduce dose at least. I started on sulphalz but I turned yellow for some reason! These drug names are so hard to spell!
Hi. No I'm not on Methotrexate. I've tried both tablets and injections but both times I had an allergic reactions. Because I had a hip replacement just under a year ago for the first few months my meds couldn't be changed. Then I tried Lefluomide but that made me ill. In all that time I've been on Sulphalazine for little good its done. Thank goodness I passed the criteria for biologic treatment. Yes sulphalazine turns things yellow! Did you know you are advised not to have contact lenses?
Oh really? I know eye checks are important but didn't know that! Talking of eyes I am getting blurry vision lately so have booked for eye test. Could be just eye strain.
The only advice I've been given with regards to Naproxen was to take it if needed. Obviously within the dose limit and Omneprezole. I find it difficult to communicate effectively with my rhuemy, she doesn't really listen to what I'm saying. But I'm keeping an open mind for my next appointment, clean slate and all that, maybe she has off days like the rest of us 😊
We can't give medical advice, but I think you have it spot on. To me it would be a last resort to have to rely on anti-inflammatories permanently, and something to do once all other options have been tried. Plus, although they reduce inflammation they aren't actually modifying the disease which is still buzzing about. Whereas the drugs like Sulpha do (or should) actually quieten down the underlying disease.
With docs that have communication problems, my experience is that it's best to keep things simple & direct. And explain things in symptoms they understand. So "I feel bad" doesn't mean anything to a doctor, but "the pain keeps me awake at night" does. So just say straight out that you don't think sulpha is working as you have pain and selling in your joints if you don't take naproxen. Whe. I have an appointment, if I'm flaring I don't take anything to mask the symptoms like anti-inflammatories for 3 or 4 days beforehand so they can see me how it really is.
Thank you Helix .Very useful advice, I've been taking Naproxen nearly every day for over a year now, something I'm not happy with. Your answer has has allowed me to approach my appointment with renewed confidence.
From another perspective 😀 I have been on Diclofenac for 16 years now. I have taken a PPI alongside it most of the time.
If I forget to take it I know as soon as I wake up because my fingers feel stiff and sore. I would consider my RD (very?) well controlled at the moment, (by Humira) but that hasn't always been the case. My blood test results have been in normal ranges for about 5 years.
However in that time I have still had a new knee and constantly have inflammation in one of my wrists. Even when most bloods are in 'normal' ranges it doesn't mean that there is no active disease at all, however they phrase it. As Jackie says sulfasalazine and naproxen are different beasts. I hope for your sake your disease becomes so well controlled that you don't need NSAIDs, (and I don't mean to sound negative) but I wouldn't bank on it.
I am actually attempting to get off Diclofenac but mainly because I don't want to take the PPI. They were never intended for long term use apparently and more and more studies are showing negative side effects stemming from such use. I won't go into them but Google will reveal lots if you are so inclined.
I would also say that any increased risks from long-term NSAID use need to be kept in context. I should think most DMARDS carry higher risk profiles, for example.
Thanks Ade, I do agree that the risks need to be kept in context. As you mentioned it is also the Omneprezole that's is just as worrying, it's my fear of the long term use of both Naproxen and the ppi that concerns me. This is my first trial with a dmard, I was hoping that I would of felt some benefit by now. I wondering if the rheumatologist will increase my dose of try one of the others. Or a combination?
I'm afraid I can't really comment on the effectiveness of sulfasalazine as I had a serious adverse reaction to it and ended up in A & E feeling like I was dying. 😐
But yes, I would have been hoping for some effect in 4 months. I'm sure your rheumy team will be able to assess from your bloods if there has been any effect and will, as you say, maybe add in another DMARD, or change it. Although it might be a bit soon to give up altogether on it.
In the absence of @Kai-- - have you considered a dietary approach along side your medication? I can't vouch personally for its effectiveness, but am attempting to make some dietary changes in the hope that it enables me to finally get off the NSAID and PPI.
There are a lot of anecdotal cases of people having great success with this approach and there are those that swear by its effectiveness. And I never thought I would be the one saying that. 😳🍟🍗🍔😍
Just a thought, @Kai--'s profile has a lot of links to further reading if you have the time and the inclination. As he will likely tell you it is fascinating stuff and a small sacrifice if successful.
All the best.
Ade
Edited to say not sure why the @ didn't have the desired effect but you can still search the site for Kai-- and go to his profile that way
It's interesting you mention Kai and his plant based approach. I was a vegetarian for 18 years, starting eating meat then after about 6 months I developed this disease. Up until then I'd never had joint problems could be a coincidence but it's something for me to reconsider going back to. Thanks 😀
I've taken NSAIDs & omeprazole from the first day I took my RD meds gwynedd. They've always formed part of my treatment whichever DMARD I've taken, without them inflammation creeps back. I know this because I had one 3 month period when an SpR considered I shouldn't take them continually even though I explained I'd always had one of one type or another since diagnosis & he still insisted. At my next appointment my Rheumy saw that my inflammation levels had been all over the place so I explained why & she wasn't best pleased. As I'd been told to only take them when absolutely necessary from that appointment to the next I'd had no more than 10 so obviously I'd had inflammation. My Rheumy explained that all that was needed was for him to ask her & she'd had advised him to ask my GP to perform a full cardiovascular check to make sure I was ok to continue taking them daily long term. I did & all was ok except my cholesterol LDL was slightly raised, all's well now. The thing to consider is it's not just visual inflammation that needs to be kept in check, it's silent internal inflammation too such as the heart.
It had always been explained to me from early on that NSAIDs must be taken continuously & at a regular dose in order to have an anti inflammatory effect but that they're not disease modifiers & why DMARDs are necessary. Neither are they without potentially damaging effects so the correct type & dose is important & why mine have been changed from time to time, I've had about 6 over the years.
So, that's my experience & in answer to your question, I don't think it's a case of DMARDs not working if you need an NSAID, it's not unusual for both to be taken together. You could always ask your Rheumy's opinion but I would think if you have your naproxen on repeat & the direction is to take your dose daily then it's part of your daily RD meds & intended to be taken alongside if that makes sense?
Thank you die sharing your experiences nomoreheels. Its anyways good to get a different perspective. My Naproxen is on repeat, I think I'll need to talk it over with my rhuemy
Is there any suggestion that your RD could be Psoriatic arthritis or one of the other spondyloarthritis group? If so, then Naproxen is exactly the right thing to take and as an NSAID will give a lot more benefit than the DMARDs, which don't have as much effect on spondy as they do on RA. SSZ is often the DMARD first chosen with PsA or spondy generally, as that also can calm down inflammatory bowel diseases (which seem to go hand in hand with spondy).
If your inflammatory arthritis is definitely RA, then you would need to check with your rheumatologist why they want you to take naproxen as well as SSZ, preferably before you stop taking it (unless of course it is causing you a lot of side effects).
Hi Earthwitch, there is a strong possibility that I have PsA as I do have psoriasis and seronegative RF. I'm just waiting for a definite diagnosis, I'm hoping this will happen on Wednesday. I'm not having any side effects from my meds, I'm just aware that long term use of nsaid and ppi's comes with some nasty side effects. Although so does most medication. Its all relative really. If dmards are less effective why are we prescribed them? Are there alternatives for Psa?
I was prescribed methotrexate when diagnosed with seronegative inflammatory arthritis and then twice daily naproxen was added when i was rediagnosed with spondyloarthropathy. (MTX does no seem to affect spinal arthritis but works for any peripheral arthritis) My doctor suggested stopping mtx for a while when I questioned the rationale for taking mtx so for the last couple of weeks I have just been on Naproxen - and Omeprazole. I share your concerns about these two drugs and take a pharmaceutical grade probiotic called VSL#3 as a kind of insurance policy against gut problems even though there's no way of knowing whether the anti-inflammatories are actually doing any damage...
Just recently however I have developed bad tinnitus which is a known side effect of Naproxen so am awaiting appointment with my GP as to what to do next.
Because I have SpA rather than RA it is relatively easy for me to get biologics but it feels like too extreme an optional at the moment...
Hi Dhall, I am happy(not sure that's the right word) to continue with the dmards as I do believe it can help with the battle. Where do you get the probiotic from? I'd be interested to learn about it.Thank you😀
Thank you Kai, I think it's worth me investigating. I am keen to help myself as much as I can, and I do believe that diet is a big part of our health. Thank you 👍
I got them first on private description from my GP but then found I could order direct from vsl3.co.uk. Don't get them from anywhere that doesn't send them in refrigerated packs. They are not cheap and I have no idea whether they do any good just like I don't know whether the combination of naproxen and omeprazole actually causes problems. But I've read research papers that convinced me it was worth doing just as a kind of insurance policy....
Wow, this is all making sense to me. Thank you guys for the info. I have been making my own yoghurt for years, does this constitute as a probiotic? Or do I need the specific cultures?
I can tell you that in my case I took MTX for 8 months (increasing every six weeks from 10 all the way to 25 mg), during which time the pain, inflammation and swollen joint count all increased. I only got relief when I added Humira to the mix. I figured the MTX wasn't doing squat so as I saw improvements, I started to reduce the MTX. I reduced all the way to 5mg and that is when the symptoms returned! They only got back under control when I jumped back up to 25 mg. So that was my painful "fyi" that the MTX actually was playing some role. Now I am off MTX entirely because my liver function tests have been abnormal for about 14 of the past 18 months and am solely relying on Humira. The symptoms are returning, though so far manageable. Good luck to you on your journey.
Hello. I am taking sulfa as well.
Sulfasalazine is made up of a combination of salicylate (the main ingredient in aspirin) and a sulfa antibiotic. So I think it should have reached it's full anti immflamatory properties by now.
I've been on full dose 7 pills aday since January and I too am experiancing pain. I am finding I am taking more naproxen than I was in the begining. I think the sulfa is too mild of a drug for me. Maybe you too shoud go ask your doctor to review your drugs.
last week my rhuemy said that if the sulfasalazine isn't working then it's probably not arthritis! I don't want psoriatic arthritis but I do know that sulfasalazine doesn't always work for everyone. If it's not arthritis than why has inflammation shown up in the scan? I have also been relying on Naproxen too much.
I've been on 4 pills aday of sulfa since Aug 2015. I had no pain and actually thought I was going into a drug induced remission. My hands had slight swelling but I had no pain. My rheumy said not to worry. So I didn't....Then I woke up on Jan 28th with painful, slightly swollen hands and wrists. My sulfa was increased to 7 aday. Well it's been 4 months on full dose sulfa and I still am unable to do my job.
Yes sulfa dosen't work for everyone, and I glad that my doctors say that my RA is mild. BUT I don't want this RA to progress as much as it has. I am asking for MTX to try and stop it.
Sound like both you and me need to get a second opinion from another doctor. I'm not a doctor, I sell beer for a living, but inflamation is arthritis isn't it?
Sue did the rheumy increase your dose? I'm on 4 tablets a day at the mo. It really seems like a hit and miss science to get a diagnosis dependant on who your rhuemy is. But at least the sun is shining 🙏
Yes my rheumy did increase my dose. My swelling has gone down a little, but the pain is still around.
Went for lunch with my aunt and she told me that psoriasis on the finger nails and toe nails run in the family. I have been noticing my toe nails look odd. I just thought it was apart of RA. I wonder if I don't have RA but psoratic arthritis? My rheumy looks confused about the severity of pain I feel with the slight swelling. I am not faking the pain, it wakes me up at night. I will show him my ugly toe nails on June 13th and see what he says.
I think the same meds are used for psoriatic arthritis and RA.
It is beautiful outside isn't it? We reached 32 degress yesterday.
Keep in touch, I'd like to know how your next appointment goes.
Exactly,I have pain in several joints but only 2 showed any inflammation. From the research I've done if you've got psoriasis in the family then it's a definite possibility. Good luck with your appointment, I good you get some relief and answers. I will keep you posted.
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