sulfasalazine Not working

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i have been on these for best part of a year now and am now on 6 daily and all though the inflamation markers are showing a big decrease i am still in as much pain, despite taking Tramadol and Co codimal as well. Has any one had the same problem and where do you go from there? Recently i am having problems with tendons in my forearm and rear of my knee both swelling up it just does not seem to be making any difference to me 

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  • Posted

    Hi Robert, i can see how very poorly your pain and RA condition has been managed by your reumatologist, and i feel so bad for you. I dont understand why you have been on the sulfa meds for such an extreme amt of time, in this much pain, without other forms of treatment that will help manage your awful pain and RA condition. Have you been given a short term prednisone pak ( usually 10 days, at 20 mg, then 10mg, then 5mg then stop) Are you taking a prescribed anti inflammatory such as mobic (meloxicam)? This is crutial. Have you tried other treatments for RA? The sulfa med you are on is an antibiotic and actually causes much pain for many people, including myself. I gave it 2 months. The biologics and methotrexate caused much pain for me as well, lowering my immune system and triggering underlying infections (dental being huge). Methorexate had poor side effects for me, seemed to poison me, and greatly lowered my immune system. I gave this about 2 to 3 months. The directions say not to start either if these RA meds if you have an underlying infection, but we dont often even know that we have one when starting/trying these various RA meds. The success rate varies for these, and my research showed only 30% responded to the methotrexiate. Most became sicker, in more pain, or had chronic flairs (as i did). Is not your RA doctor fully aware that you are not responding to the sulfa drugs and have severely mismanaged RA ? One reason i had such painful all over muscle body joint pain, that i could not differenciate between, was because of a secondary fibromyalga condition that was also not managed that so often goes along with unmanaged RA joint pain. I found that i was difficient or not absorbing calcium, which was contributing to painful muscle spasms. Vitamin D3 is needed (i take 2000 daily) with the calcium so it is absorbed. Also i found that by taking magnesium glycinate in a 1:1 ratio with the calcium plus D3, that all of my fibromyalga muscle and nerve pain went away. I do watch very closely thimgs that cause or contribute to additional inflammation in my body. Things such as dairy (sub almond milk..has 2x the calcium), sugars, gluten, tomato sauce, soy, mismanaged stress, less than 10 to 12 hrs nightly sleep, etc. It does very much look as though your RA doctor is not trying new things to help manage your dehabilitating RA pain and condition... Are you able to discuss adequate treatment or think of transferring to another?
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    • Posted

      Hi Thanks for the reply 

      I am going to contact my Specialist today to see what more can be done as i am not happy with my treatment, i have been reading up on dietry information on my condition and need to make some changes, i have also been given Vintage apple cider vinegar to try by a friend. It was suggested at one point to change me from Sulf but the side effects of the drug he is talking about is so much greater and he is not keen to avance my treatment to that level at present 

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    • Posted

      Hi, the pain you are describing is symbolic of a possible RA flare..with pain in the forearm tendons and behind your knee (known as a bakers cyst brought on by excess RA inflammation). The sulfa drugs dont work for long for many people and not at all for others (myself here). Sulfa drugs are simply an antbiotic and the first med doctors try for the first few months. It is crutial you take a prescribed anti inflammatory.. Is this part if your treatment plan? The side effects don't transpire for everyone with the RA biologics (humira, etc), and may help you. Its really imp though that you don't have an underlying infection going on when starting them, and sometimes we dont know if we do. Also when an infection occurs (dental, or other means of infection) its imp to temp stop the biologic. Methotrexate is sometimes prescribed, which actually lowers the immune system and triggers more inflammation pain, as well as fibromyalga pain. It seems this is not very effective for a high number of RA sufferers. I stopped after 3 months because it caused more pain and many flares. Some RA doctors attempt to try methotrexate and then if it is not successful, add the biologic. I stopped the methotrexate and took only the biologic with the anti inflammatory. Bec my immune system had been compromised from the RA meds, i began having some dental issues, with the dental bacteria entering my bloodstream and compounding my RA pain. Once the tooth had been extracted and the augmentin (stronger antibiotic) had cleared out much of the bacterial infection, my pain decreased by about 80%. Due to the methotrexate lowering my immune system at the time of my tooth root infection (from a prev extraction 1 yr prior)
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    • Posted

      Hi Cheria 

      very interesting my specialist did mention Methotrexate but is reluctant to prescribe it. I have just had Ultrasound and xray results back whith is showing Tenosynovitis in my fingers and wrist so they are sorting that with Steriod Injection. After speaking to my specialist nurse she believes that my Knee is Bakers Cyst are you do, that has today gone down a bit but no doubt as the day goes on will inflame again. Also i have noticed that some of my teeth are very loose so another sign that you described all in all the condition is starting to take over. they are bringing forward my next consultation with my specialist to address these so i will just have to wait and see what they intend to do.

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  • Posted

    (Continued) due to methotrexate not helping as well as lowering my immune system, and triggering infections and flares, i went off from this with the RA doctors full support. Trying the biologics for me was not successful for me as well, but for some it is. I was flaring about every 3 months causing to much prednisone use. Finally decided there were not any biolgics that helped, and decided to try plaquinil, which has very few side effects at all. It is suggested though to get yearly vision exams to make certain there is no retinal damage. I have had excellent success with this medication, and take tramadol 2x daily (for past damage done when treatment plan was not working for about 2 yrs), and a prescribed anti inflammatory (mobic). I do watch closely what i eat to keep inflammation down, sugar, milk, dairy, soy, spaghetti sauce etc and monitor stress and sleep..i believe i have already written above how much the combined vitamin and supplements have helped me. I just started drinking apple cider vinegar and lemon juice in a glass of water and believe its got to be doing some good. It seems to be about trial and error with the RA treatments being proactive to help this along. It is bewildering to me to be on the sulfs drug for such a long time, not helping, with you now in a flare. Your doctor may consider prescribing you with a short term 10 day steroid pak to get your inflammation under better control with your recent flare symptoms before asking you if you would like to consider one of the biologics. Methotrexicate was poison for me, and as i have said did nothing but lower my immune system and induce infection and more RA pain. There are many others with this same experience. Its very imp to take folic acid, 5 mg wkly as it depletes this.. and causes stomach nausia etc without it..vitamin d3, magnesium glycinate, calcium and a good multi vitamin have helped keep me well also.
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  • Posted

    Hi Robert

    It is common for people to have bowel and joint problems alongside each other.

    If you've got joint swelling you need an anti-inflammatory (ibuprofen, naproxen, diclofenac, etc), not necessarily just a pain killer, as this will not take the swelling down.

    Amitryptiline can be really helpful at night if your sleep is affected or you're waking in pain.

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    • Posted

      You need a full case review by your rheumatologist, if you are in the UK you may be eligible for one of the newer anti tnf drugs.
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  • Posted

    I've been on SULFASALAZINE for about three weeks. Still no appreciable improvement. Good days, bad days, very weather dependant. Doctor says  it could take three months to work. I get a bit dizzy for about an hour after I take it. And even if I eat I feel nauseated. But all of this goes away after a hour or so.

    getting used to it but nothing positive yet.

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  • Posted

    Hi Robert I've been on Sulfa for at least 3 years maybe more and don't think I've had any pain relief at all, on Lyrica and solpadol and Amytriptaline to help with pain which when taken makes me drowsy.

    Specialist says your pain is under control.I don't think it is. Having right thumb operation later on in month due to extreme pain.

    Also had both knees left shoulder and left big either replaced or fused. Think you have to be on Sulfa for quite a bit of time for it to work. Was on methotrexate previous but that didn't help

    Good luck mate hope you get some relief from your pain

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    • Posted

      Hi woodywhite 

      This is an old post I am also on MTX now as well as Sulfasalazine Tramadol and Co codomol although that said I am still in no better place as for the pain I am still in as much pain, I have not seen my Rhumy since August last year but I have an appointment this month so will bring up all this then. I had a week in hospital for intense Hydro and Physio which was great but within 3 days of coming out I was in more pain than when i went in. I just get on with it now and do what I can. 

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