Hey everyone! If you haven't seen my name before, I'm Megan and I have palindromic rheumatism, my rheumatologist believes in my case it is a precursor for RA. So they've started me in Sulfasalazine, we were going to try plaquinel but she referred it as "plaquinel is the sticks, Sulfasalazine is the rifles and methotrexate are the bombs." She wanted to put me on something strong but gentle. I was wondering for those of you who have tried both, how have they treated you and did you have any good or bad experiences on them? Please let me know, I know everyone responds to medication differently and those with RA have a more progressive disease that may be targeted easier or more difficultly but any experiences are a great help.
Sulfasalazine- what's your experiences?: Hey everyone... - NRAS
In my case sulfasalazine sucked!
But you may do very well on it. I haven't tried the others mentioned.
"Rifles" was the first med I was given (easier to pronounce and type than sulfasalazine) when my RA started 15 years ago. No idea if it would have done any good as I had to stop taking it shortly after starting because I developed a rash. Not saying that this will happen to you for a second as we all react differently to these drugs. Just be aware of anything out of the ordinary no matter how insignificant it seeems, and get in touch with your rheumatologist straight away.
Thank you for your response wishbone. Yes it is much easier to pronounce isn't it, gave me a laugh as well, beats crying! I'm sorry to hear you had a bad experience, I'll certainly be watching out for anything unusual. Fingers crossed!
Rifles was my third - I was already armed with sticks & bombs so my rheumy went for full armoury to try to beat my RA into submission. It worked fine and I'm still on this mix 6 years later.
The first couple of months with it were a bit tough, as it upset my stomach in embarrassing and noisy ways. But that wore off, and all fine now. However don't be surprised if you have bright orange pee.
Thank you Helixhelix, firstly for the chuckle I got from reading the start of your post. I'm glad your medications are working and your side effects have certainly gotten a whole lot better. Thankful also that I got that warning now, I would have had a panic attack if I noticed bright orange pee lol, preparing myself for all the possibilities, woohee! 🤣
Only diagnosed last November and went straight onto "bombs" titrating from 15mg to 25mg which is where I am now. The side effects have been minimal and tolerable, lucky me. Unfortunately, it's not quite enough and have tried hydroxy chloroquine which made me feel quite poorly and sulphasalazine which didn't agree with me either so, I don't know what comes next. We all react differently to the meds and my experience may not mirror yours. Wishing you better
Oh Jan, that's some good news! I've heard about some of those nasty side effects with the bombs, you certainly are lucky in that sense! But unfortunate that it's still not enough especially being that it's as aggressive as it is. If you don't mind me asking, are you working full time?
You are absolutely right there, there are so many different experiences, we all respond in our own way and I really hope that you find the perfect treatment for you! Wish you the best and thank you so much for sharing.
I'm knocking on a bit now at nearly 64 and was made redundant some 8 years ago just before our wedding. Great timing or what? Getting another job seems impossible so now a lady of leisure. I don't know how people manage to work full time and reckon they deserve a medal.
Thank you for your kind wishes. I believe that all will be OK in the end and wish you the same.
When I was first diagnosed I was put on rifles, four a day after about a year it was increased to six a day. Had no side effects at all, not even the orange wee that most people seem to get. I did pretty much okay on it, but with the nature of the illness with it being progressive had the bomb introduced after two years. Did need to take pain relief.
I am now on enbrel and the bomb and have been in remission for over four years. Yes, drug induced remission is possible. No need for pain relief at all.
Good luck. x
Hi Paula, that's how I've been started as well- 2 in the morning and 2 at night, hopefully that kicks it in the butt without increasing. Great news that you had no side effects. Did you have any with the bomb?
That is a great relief to know, thank you and it's just incredible, I'm very hopeful and I see now why my rheumy said "It's not like how it use to be", times have certainly changed the prognosis!
I haven't really had any side effects with any of my drugs. I always say I must have the constitution of an ox. I know I'm extremely lucky being able to tolerate the drugs, some poor souls aren't so fortunate. The only side effect that I may have due to mtx is slight hair loss. I'm told it's not the drugs, yet when I mentioned it to my consultant a couple of years ago, he upped my folic acid from one a week to one every day. So, if the mtx wasn't causing it and folic acid is for side effects of mtx, I have to ask myself why he increased it.
The prognosis now for people with RA is so, so much better than it use to be. Anti tnf drugs are really wonder drugs. I know I shouldn't say we are lucky to have these newer drugs, because having RA is a terrible condition to have. But I remember my consultant telling me how things had advance with drugs, adding that years ago you were just put to bed with aspirins. x
Did the increased folic acid improve the hair loss, please?
At the moment I would say no. I'm getting paranoid about it now. I took a picture of the shower tray after I had washed my hair and showed it my hairdresser to see if it was normal and he said it wa excessive. It's not just when I wash it, when I rub the mousse in it's all over my hands and then after I've blow dried it and I put some styling wax on it my hands again are covered.
I did ring my helpline up about it, felt really silly ringing about such a trivial matter, but it's really bothering me at the moment. Was told all my bloods are ok and the RA drugs don't cause hair loss, and to see my GP. But, like I stated in my earlier post, if mtx doesn't cause hair loss why did the consultant increase folic acid?
When I look back at photos pre RA my hair was so much thicker. I should soon be having my yearly RA check up at my doctors so I will mention it then. I'm in remission and I'm very tempted to take mtx every other week at the moment. My hair is something that I just need to look right. Vanity I know, but it's just how I am. x
I sympathise fully. You owe no apology - it is a perfectly understandable and valid concern, so state it with confidence in sensible, frank discussion with GP and with your RA medics. Best wishes. And perhaps you'll let us know how you go on...
Booked an appointmen this morning to have my yearly RA check up with a GP, it's on the 9th October. Will post what happens. Will have to sort out some pre RA photographsto show her. x
That is very strange indeed Paula, according to your health professionals it doesn't cause hair loss, maybe that's according to 'the book', surely they need to do a more extensive study to make physicians more aware, because at first thought, mtx does cause hair loss, the dosage with RA is much less than when it used as chemotherapy, of course, but the longer you are on it those risks increase, logic right? So why can the doctors not admit that. A simple google search has shown so many people with RA on mtx, have hair loss! And it is the mtx! Here is an article you may want to take to your doctor, it's from arthritis.org, trusted organisation, stating methotrexate will cause hair loss.
I'm sorry that you aren't being heard like you should be. It brings me back to the beginning when I was told my arthritis is a symptom of mental stress. If your gut tells you otherwise, push for more! And if they say again, methotrexate won't cause your hair loss, maybe ask for some research supporting that, just to be tricky.
It is entirely possible for doctors not to have all of the facts, for example, I have a condition that most of my doctors haven't heard of, yet it's been around for over 20 years. The medical profession needs to be more involved in recent studies etc and go as far as to look at new studies to support their patients x
I was once told that after about six months on mtx it shouls settle down, I've been on it seven years now. I realise it's a small dose compared to people with cancer,but having it every week for over seven years must do something. I've read numerous posts on forumsand lots if people report hairloss.
I've read the article in the link and found it interesting. Thank you. It did mention enbrel and I've been on enbrel for five years.
For a woman I think her hair is so important.
I once read an article stating that the first thing most women diagnosed with cancer say......will I lose my hair? While men ask......am I going to die.
Think that says an awful lot about how important hair is to a woman xx
Hi Paula, It seems that rheumatologists do deny that symptoms are not caused by the drug. Especially if it's an uncommon one. Just googling Mtx and hair loss produces results, and yes increasing folic acid is recommended. My husband lost all his hair on Humira. The rheumatologist said it couldn't be caused by the drug. He was referred to a dermatologist, who confirmed that it was the Humira and that the hair follicles can be permanently damaged.
Paula-C, about 10 years ago I began to lose large quantities of hair every time I showered. Had recently been taken off of all hormone replacement therapy. My Cosmetologist said to begin supplementing with a dose of Folic Acid each day. It began to work IMMEDIATELY! Thus, I have remained on it and have every intention of doing so until I pass. Have only been on Sulfasalazine for approximately 3 months. After 8 back surgeries (the last being a permanent Spinal cord Stimulator that WORKS), I was diagnosed with Inflammatory Polyarthritis and Degenerative Joint Disease. It took about 3 weeks before I could actually tell a difference, but now I take one pill each am and one each pm. I can tell a SIGNIFICANT difference! Hoping this helps, both you AND ESOGERM!
I am on sulpha and it works fine for me.I am also on MTX and both work well for me.xxx
Hi I started on sulfasalazine about 3 months ago adding to my list of meds taken for RA. The first few weeks I was a bit nauseous and had headaches. But this has started to subside still get a few headaches but no longer fell sicky.
For what it's worth I started off with Palidromic Arhritis & Sulphasalazine. I was very naive & did as I was told & took it every day for 12 weeks, sick most days & lost a ton of weight.
Rheumy said I should have complained earlier! Wish someone had told me that!
I moved on to Mtx & never looked back.
So if you feel SSZ is not helping...say so now! Your blood test results will convince your Rheumy you are right.
Hi AgedCrone, thank you for responding, that's awful! Firstly I'm sorry that you were so sickly on the sulphasalazine, secondly I'm sorry you had to suffer those side effects when it wasn't working for you! I've heard of the progression from PR to RA can be months, or even a decade, I hope you don't mind me asking, but how long was it before your PR had progressed into RA?
I have had it for about a year now, and have only now started treatment. I will certainly be listening to my body and remembering your story.
I hope the Methotrexate is treating you better! Best of luck!
I'm 8 weeks into diagnosis for RA and on hydrochloroquine and sulfasalazine. Feel utterly hideous. Headaches, dizziness, nausea and feel like I have early flu most of the time. I have told my rheumy and she said try and stick it out for a few weeks. I feel so dreadful I almost want to stop it myself. Had so many days off sick. So I see her again in 2 weeks.
Hi Jules! You have been recently diagnosed, I am sorry to hear that, and how awful that you feel this way. It's much easier said than done to just stick it out, hopefully it improves over the next few weeks and is abit more kind to you! It's still quite early I understand but do you notice much difference with your pain? I saw your post on vinegar and feeling as if that could be a trigger and It's encouraged me to start looking at my diet more and what I'm eating before my bad flares so thank you for sharing that also!
It's a bit tedious but great to keep a food diary. Every time I feel swollen i write down what I had the day before.
Only 8 weeks diagnosed. I was put on steroids for the first 6 weeks which helped the pain a bit, not massively. They did do wonders for my Osteo knees though!!!!
I guess I'm so worried that for 8 weeks I might be on the wrong drugs and everyone says that the first 3 months after diagnosis are absolutely crucial. What if I'm on the wrong drug and the whole 8 weeks the RA is progressing. I feel much worse than I did 8 weeks ago.
Hang in there Jules as no one can say you haven't given it a try as you'll be almost three months of taking them when you see the rheumy. They always like you to try the meds for three to four months (unless really bad reactions bedore then( as that's when most of the RA meds start to be most effective and you notice a difference. I hope so for you anytime soon but if the side effects are too awful you have to tell them just how they are. I always felt like I had flu early days of RA when the RA was not controlled and inflammation was high so never really thought that was the meds for me. I have never had Hydrochloroquine so can't comment. I felt odd in my tummy with Mtx tablets and when I got up to 20mgs dose I felt pretty nauseous the day after but quickly reported this to my rheumy nurse and was switched to injections which don't have that effect. x
Trouble is, it's coming on so fast. From last week to this week the pain is so bad. Can now feel Inflammation in my left hand and fingers. That wasn't there 2 days ago. But then again I am 3 days off taking steroids. Maybe that is why too.
Hi, daft question maybe, but do you eat something before you take Hydroxyxhloroquine? I've been on it for a few years now, but it still makes me nauseous unless I make sure I've eaten something first, then it's totally fine. Might be different as you've only just started taking strong meds, it can take a while till your body gets used to them, but from personal experience I'd always advise making sure you've eaten something before taking them. Hang in there, hopefully they'll start doing their thing soon for you
I am allergic to sulphalazine, methotrexate and leflunomide so am on hydroxychloroquinine, for which I have had no side effects but don’t feel it is very effective, and Benepali which I started 2 weeks ago. It has taken me 2 years to get to this point. Think it was complicated though by PMR diagnosis a few months ago as well. I am on steroids for that.
Hope you get on alright with it. Good luck.
That's unfortunate Tracey! The medications designed to help you and you are allergic! Thank gosh for the variety of treatment we have, I'm so glad to see hydroxychloroquinine hasn't brought any side effects but there's still a difficult way to go to finding the perfect treatment for you it sounds. I wish you the best of luck in getting there, and I hope that you hold your head high along the way, to have a physical weakness is to have a mental strength! X
I tried Hydroxycloroquine aka Plaquenil nasty side effect with my hearing, moved to sulfasalazine had headache and dry mouth. Headache left after a couple weeks, dry mouth stayed. Sulfasalazine didn't cut my inflammation enough so my rheumatologist added mtx. 3 weeks into mtx, So still in the side effect mix, but hopeful!
Hi Mandy, I love that you added that you are hopeful in the ending, that's the perfect attitude to have and I follow that. Hopefully the mtx being the big kid on the playground gives your RA a little push in the other direction. Best of luck and keep strong!
Have PsA. Had these so far. Sulfasalazine, leflunomide, Otezla (very bad side effects drug stopped after 5 weeks) starting Hydroxychloroquine soon in diabetic eye screening people give clearance. I have background retinopathy and H can affect your eyes. Next step anti TNFs
Hi Scottie! Thank you for your response! Sorry to hear you have PsA, did that develop from psoriasis or on its own? I hope that one of these finally works for you and is kind to you at the same time. Keep strong and I wish you the best of luck!
Thanks Esorgem gem
#esorgem sorry sent previous one early. Blame my sausage fingers. Had symptom 9 years before diagnosis. New rheuo saw miniscule patch of psoriasis and gave diagnosis. Amazing that such a small patch could be linked with huge joint issues
Yes! I only have psoriasis in my hairline (as well as some dodgy nails). The GP dismissed it as dermatitis when I showed it to him but the rheumatologist looked at it and said, "Plaque psoriasis". I'm waiting for further tests but she's written that the "likely diagnosis is psoriatic arthritis".
I know it's a lot to take in, but I tell myself that I am the coolest science experiment ever!!!!
A couple weeks ago I was in seeing the vampires (phlebotomist) and they all looked at me like I was an 👽 when I raised my hands to the sky and said...... Wooohoooo!!! That's a new personal best!!! 21 vials of blood on an empty stomach!!!!
I am a proud smart@$$ with a strange sense of humor that's the only way I keep from crying! Keep your chin up and keep the doctors on their toes!!!!!
Hi Megan, fellow PR sufferer. I've been on mtx injections for 18months without many side effects (nausea/headaches initially). It helped a bit. Now I'm on ssz as well. I wouldn't say I was very well controlled but maybe some improvement. The last couple of months, I have had plenty of attacks but possibly less severe. I had to reduce dose of ssz bcos it was giving me palpitations. Good luck x
Hi Elmo, lovely of you to respond! How long have you had PR? & if you don't mind me asking, how have you come to accept it? My issue is the unknown, its a precursor and might develop into RA but we just have to wait and see. That's scary, and frustrating!
Great to hear about the minimal side effects with mtx! How is your fatigue on either medication? I know that this already takes some energy but I was curious to know if fatigue increases, it seems like it would being the kind of drug it is but no one seems to complain about it!
Thank you, and good luck to you as well, I hope it all starts to stabilise soon, give you a little bit of a break! Xx
Hi. My consultants opinion is that I have PR but RA as well (based on Rheumatoid factor, anticcp, ESR, CRP and ana all being positive!!). Most of my symptoms fit perfectly into the PR diagnosis though. I get short (2-3days) worth of immense pain and then it switches to another other joint it chooses. The most frustrating thing being the unpredictability. I have not had a proper attack for about 3 weeks which is a very long time in my disease so I think the mtx, ssz combination might finally be working. Lots of people talk about extreme fatigue the day after taking the mtx but I don't really find that-maybe initially but not anymore. I don't have fatigue all the time and I don't think it is linked it the medications (for me anyway!). Do you have positive bloods yet? Not many Drs have even heard of PR. Did you struggle to get a diagnosis? X
That is very confusing isn't it! Hopefully having more of the PR symptoms will protect you for awhile from the awful joint damage in RA. The unpredictability of it is the worst, you are right! I don't have any positive bloods, so I feel crazy most of the time I do have slightly elevated inflammation markers though. Will be ordering some follow up tests soon as my last ones were about 5-6 months ago and I understand bloods can change.
Fingers crossed that your medication is really working, that would be great! Hopefully it's not the PR or RA being deceitful and hiding out for a few weeks. Fatigue is a major issue for me, I have a very abnormal sleep study that I need to redo so it could be a problem on its own (joy!). I was diagnosed after about a year of complaining, I was just diagnosed with tendinitis in the beginning because the joint swelling made the tendons in my palm swell too but considering people have gone a decade or more without a diagnosis, I am quite grateful. How long before you received your diagnosis? Also did you have your PR and RA diagnosed at the same time?
Hiya Megan. I have RD (RA) not PR but have been on HCQ, MTX & SSZ & LEF. HCQ was my first DMARD which worked for a year when MTX was prescribed. This has been my longest serving DMARD at 8 years & have no side effects really, I'm just a bit more tired the following day & pick at food rather want a full meal. As I can't go higher than 17.5mg on MTX injections (increased liver levels) & with disease activity determining I needed another DMARD next was SSZ but had to stop as I felt so low on it, nausea too not solved by antiemetic so I'm now on MTX & LEF which I tolerate but I'm not convinced is working too well.
You're right, as much as each of us is different so are our reactions to meds so whilst we can share our experiences there's no saying yours will mirror them. I hope SSZ works for you though, it can be a good med for many.
Sulphasalazine worked well for me for several years with no side effects that I was aware of. Side effects with HCQ; MTX in tablet form not effective but via injection worked well for a while. MTX + Enbrel too strong; Enbrel as mono therapy brilliant.
I could use it became very sensitive to sunlight even on a very cloudy day. Got taken off it.
I'm have been on rifles for about 2 years first on 4 a day then 6 then back to 4 with along Hydroxychloroquine side. The only side effects I had was the orange pee and I had some hair loss but not enough to stop me taking it. I had some relief but got more with the Hydroxychloroquine added in.
Hi, I started this month 1st. I can’t cope with taking the Sulfaslazine in the morning so I’m just two pills just before bedtime. My hands have shown an improvement. But my lower back left knee and neck still give me pain. The injection I had before the meds’ really sorted the pain. I asked the nurse to just put me on the injections. She replied with “they create brittle bones” I’m over due for a blood test and I will let them know that I am unable to cope with the side effects in the daytime. (If I take a pill in the morning)
Hi, Melancholy 😔 . Sorry you are another victim rowing this boat for a satisfactory treatment plan against RA. I also have RA (40 yrs) and only recently learned I also have palindromic rheumatism which I've only recently learned about.
Over the yrs, I've been on all sorts of meds. Most recently doc put me on methroxate & remicade but had me discontinue methotrexate b/c of effects on liver.
Hope you continue doing well with methotrexate be safe.
Hi Megan, I started on Hydroxy then they added metho, which I didn't like - gave me breathing issues. Stopped that and then I was given suphasalazine along with hydroxyl... Wasn't sure if either of them were doing anything, but I definitely notice the difference when I'd run out of hydroxychloroquine whilst being away on holiday so it does help. A few months ago my sulpha was reduced from 2 in the morning and 2 at night to 2 in the morning and 1 at night but I started getting quite sore again. It's now back to 2 and 2 and I'm feeling much better, so it's also obviously doing its job properly too. Always make sure you eat before taking them, I feel sick if I forget, but other than bright yellow urine back when I first started taking supha, I don't think I have any other side effects, which is good Those 2 meds on their own didn't stop my condition progressing, so I've been on one of the biologics too for almost 2 years, but they both work alongside them so it must be a good combination for me. Good luck with them, hope they work for you too
I had breathing issues from MTX so stopped. My rheumy said she's never heard of anybody having such problems but I've come across quite a few on these forums. I wish the rheumys would read up on these illnesses, they could learn so much from people who have got them!
Yup, think we are def the experts! I thought breathing issues was listed as one of the potential side affects mind you, maybe your rheumatologist has just had a bunch of lucky patients who have never had that particular issue. They should definitely read some of the posts on here
Quite couldn't get that tablet there an ingredient in it that I'm allergic too
I could not get that tablet there is an ingredient in it I'm allergic too
Maybe Iida 🙋🏼♀️( healthunlocked.com/nras/pos... ) might too?
Very best wishes to you, Megan. 😌 🙏 🍀 🌺 🌞
Abundant experiences on NRAS forum with:
. . . Rifles 🔫 (Sulfasalazine): healthunlocked.com/search/s...
. . . Bombs 💣 (Methotrexate): healthunlocked.com/search/m...
& on NRAS website too:
. . . Rifles 🔫 (Sulfasalazine): nras.org.uk/search?q=Sulfas...
. . . Bombs 💣 (Methotrexate): nras.org.uk/search?q=Methot...
And, this infographic 🔢 gives a nice overview of the 3 (+1 more) DMARDs: healthunlocked.com/cure-art...
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