Hi, I've recently started sulfasalazine after a short spell on methotrexate which really didn't agree with me. I'm feeling ok, a bit nauseous and tired and also a bit low.
I'd like to hear of other folks experiences of this drug. Has it helped long term and do the side effects wear off? Feel like I'm between a rock and a hard place at the moment.
Hi
Started on Sulphasalizine many years ago. Was on it ten years. Make sure you have the variety with coating to make it easier on your stomach. I found nausea settled after a while. Headaches bu again these settled down. Proved effective for years then wore off and had Methotrexate for a few years before damage to lungs forced change to biological. Best wishes
I started on sulfazaline, just couldn't tolerate it, so switched to mtx - got up to 25mg using metoject pens but again the nausea overwhelmed me, so then went onto leflunomide. Tolerated that for several months but it stopped working and my hair was thinning drastically. I'm now on benepali, and back on mtx (the two work well together) but I'm not seeing a massive decrease in pain. At least thus time round the mtx isn't giving me too much trouble.
I think the problem with all these drugs is that they do cause stomach problems. I have found that taking them with or after food helps so that they're not hitting an empty stomach.
It's all trial and error really - what works for one won't work for another. I wish you luck, and hope these symptoms pass quickly for you xXx
Thanks! Pain is not something I envisaged having to deal with right now! I'm 55 and pretty sure it's connected to menopause, well that's the only way I can deal with it just now. I just can't believe how much it takes over every aspect of your life, such a preoccupation 😕
I too think that there is a menopause connection. Or at the very least a drop in testosterone connection. I wonder if thats why it is mostly a female disease. I know of someone whose little boy had severe juvenile idiopathic arthritis that disappeared when he hit puberty. And yes, I agree, it is a huge preoccupation.
Hi Sjhoney, I've never been on sulfasalazine but I've been on Methotrexate, in fact I am still on it, although not for my RA as it happens. I started with RA 20+ years ago and was put on Methotrexate after many other drugs failed, however, I was scared of the drug and didn't stay on it long, I have a niece who has been on it for many years for really bad RA and it has helped her, although her hair has fallen out now. I was diagnosed 3 years ago with LGL Leukaemia which is of the T cell variety of leukaemia. I found out then that Methotrexate was a chemotherapy drug in tablet form and I have been on it now for over 2 years to try and stable the Leukaemia. It hasn't had much effect but I am scared to come off it, and equally scared to take it!!! One doctor told me that it was a good job I hadnt been on it since developing RA because it just poisons your system. I don't intend to scare anyone but essentially that is what all these types of drugs do. You have to weigh up the pros and cons. Luckily, I managed without it all these years and would not be on it now if I hadn't developed blood cancer. Mind you, you could say would I have developed blood cancer if I had been on it? because RA sufferers are more prone to this type of leukaemia, no one can answer that question. I do have some side effects, nausea, extreme fatigue, but I also have developed fibromyalgia now so it could be contributed to that. Who knows. Strange illnesses, with even stranger treatments. We are in their hands, we just have to hope they know what they are doing. lol. Good luck with the new treatment, I really hope it helps you. Take Care. Linda. (Anneileen) xxx
Hi, thanks for your experiences. I know that these are heavy chemo drugs but, as I said, it’s like being between the devil and the deep blue sea! It’s all going well for the moment apart from a bit of nausea and fatigue do fingers crossed 😊
There are two sides to this. Before members on MTX do start worrying that being on the med will cause leukaemia, it won't. Neither is it a chemo med at the doses we on here take. It is true it was first developed as a chemo med back in the 1940's but used this way, either orally (tablets), intravenously, intramuscularly, intrathecally or intrarterially in doses up to ten times higher & more often than the once weekly we take it. The way it works as chemo is by preventing cells from using folate to make DNA and RNA, thereby slowing the proliferation of cancer cells. It was in the 1980's when it was found it could also dampen inflammation by causing cells to release adenosine (a chemical messenger) which blocks other chemicals that promote inflammation. It's thought that this is how MTX reduces inflammation in RD & other autoimmune diseases & why it's considered a DMARD.
I would be interested to know if the doctor who told you MTX poisons your system also said how soon it takes to do so & why, if it does, RD patients like myself have had their lives changed for the positive. Surely something that works positively for a condition can't be called a poison? Certainly up to one third of those who develop the type of leukaemia you have also have RD but it's the disease that's the cause not MTX.
I hope the treatment works well for you Linda, maybe you wouldn't have been kept on it so long if it wasn't doing something, they'd have tried alternative treatments surely?
Please, I never suggested that MTX caused my leukaemia. I was diagnosed with RA about 25 years ago, I developed leukaemia 3 years ago, I was only on MTX 25 years ago for a few short weeks. I have been on it now over 2 years to try and suppress the leukaemia. The doctor who said it was poison, was referring to it if I had been on it for the 25 years. The Leukaemia I have is not caused by medication of any kind or the RA, it is too rare to do clinical trials and is only properly investigated in the USA. No one here really knows how to treat it, there is no cure, just treatment. Thank you for your concern, the doctors do believe there is a connection with people who have RA, a percentage do seem to have this kind of leukaemia, but it is too rare as I said. No one needs to worry about leukaemia really, I was just unlucky, there are only a few hundred people in USA with this and much much fewer here. Hope this makes better reading. xx
You did actually say it as a question not a statement but the idea is still there, "Mind you, you could say would I have developed blood cancer if I had been on it?". This was why I was concerned, not that you said it was definitely why you have it, whatever the cause I'm sorry & wish you as well as you can expect to be.
Thank you, that is kind of you. Hope you are doing ok. xx
Not too bad, thanks for asking.
I was on sulfasalazine for 3 years. After 3 weeks of stomach issues it worked very well for my pain however, I became very depressed over time. My doctor kept telling me it wasn't the medication. I continued taking it and got worse. I have been off it now for 2 months and the depression has lifted. Mentally feel much better.
Hi, I’ve just been reading over the replies and found yours. I’ve had a pretty bad few days, feeling extremely anxious and crying etc. I’m pretty certain it’s the sulfasalazine but my dr said it wasn’t a side effect! I just don’t know what to believe and am feeling so confused. I have a history of depression but have never felt as bad as this. How are you getting on now?
The manufactures warning says depression is a major side effect. Do your research.
I haven’t seen that listed as aside effect, have only read about it on forums.
everydayhealth.com/drugs/su...
This is one of several pages I found it. Look under serious side effects it lists mood changes as one.
I've been taking MTX for 8 years but because I can't go above 17.5mg subcut I need another DMARD to control the disease. I tried SSZ early last year but despite persevering it beat me. My symptoms were similar to yours, nausea (& sickness) which didn't ease even when prescribed an antiemetic & my mood was so low, really not me at all. I'd never experienced being so low before & it really concerned both myself & my husband so I pushed to stop it, not that my Rheumy nurse thought it necessary. I told her if she didn't ok it I would just stop it. She took me seriously then with seeing a very different side of me & said the only option left was leflunomide. She gave me a leaflet & I asked if I could think about it & I'd call her if I decided to try it. I did & started that 11 months ago.
I'm sorry my experience wasn't more positive but as you're already having similar symptoms I thought it worth mentioning so you don't think you're on your own feeling as you do. It might be worth continuing on it to see if you feel better the longer you take it but do ask your GP for an antiemetic to help with the nausea.
Hi Sjhoney - Sulfasalazine was the first drug my Rheumy tried for me when I was diagnosed with CCP-positive inflammatory arthropathy a year or so ago. I was doing OK on it and it was reducing the inflammation in my feet/hands/fingers but, about 9 weeks into an increasing dosage regime, I developed an allergy to it which took the form of hives, starting on my neck then spreading all over within a few hours, by which time I felt quite poorly and was sent home from work. I was advised to stop taking it immediately and my Rheumy later said that I could not ever take either Sulfasalazine again, or any drug of a similar type. He put me on Prednisolone temporarily, then started me on oral Methotrexate 15mg. and Folic Acid four months ago. Since then, I've had several infections one after the other - rhinitis, athlete's foot, conjunctivitis, thrush and a UTI! He's now advised that I might do better on MTX injections - the kit's arrived so now just waiting for a nurse to come and show me what to do. I hope your experience with Sulfasalazine turns out to be a good one.
Hi.
I've been on this for weeks now and still feel nauseous.
I'm supposed to take 1 tablet twice a day,but I can on.y take 1 tablet daily because of how it makes me feel.im hoping my rheumatologist will be ok with this.
Good luck,keep at it.
X
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Merely supplemental Sulphasalazine (SSP)/ DMARD info, Sjhoney, if this type of thing interests you. A capsulised summary/ infographic that may helps place the SSP DMARD treatment in context.
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Managing Patients Taking DMARDs
(Disease Modifying Anti-Rheumatic Drugs)
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🛅 INFOGRAPHIC (pdf): bmj.com/content/bmj/suppl/2...
A visual summary of the 4 most frequently used DMARDs, including recommended monitoring & conditions that may interfere with treatment:
1 • Methotrexate (MTX)
2 • Leflunomide (LEF)
3 • Sulphasalazine (SSP)
4 • Hydroxychloroquine (HCQ)
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"Symptoms of inflammatory arthritis are often controlled in the long term using DMARDs (disease modifying anti-rheumatic drugs).
These are usually initiated by rheumatologists, with patients commonly taking two or sometimes three DMARDs simultaneously.
This graphic shows information about four of the most frequently prescribed DMARDs, including recommended monitoring and other conditions that could interfere with treatment."
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📰 ARTICLE: bmj.com/content/358/bmj.j32...
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[Many thanks to Man_Oeuvre 'BMJ DMARD infographic': healthunlocked.com/nras/pos... 🙏 😌 ]
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Wishing you the very best, Sjhoney. 🙏 🍀 🌺 🌞
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I had sulfasalazine 1 year, not really bad side effects... they built up slowly. Got depressed, insomnia. Dr said not pills. Decided stopped pills and my depression is much better... so it was pills. Right now i am only with tramadol... not so good but helps me with pain
So sorry you're struggling. The early days are difficult. It just does take time for a drug to become effective - 3 months is the average for Mtx. Good luck x
Thanks. It seems to be ok, I’m on the full dose now and feeling alright, altho it has put me off eating which is no bad thing! Just hoping it works on my pain 😬
It’s hard to know whether the change in mood is down to meds’ or the affect of RA itself? I’m usually a sociable person but feel I want to be alone a lot of the time. And then I wonder if it’s the thought of the long winter months ahead? Feel like hibernating to be honest 😕
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