I was diagnosed with RD about 8 years ago, I'm currently on methotrexate injections and I've been having low-grade problems for about a year. It's not a flare, I've recently got over the most recent one of those, but my baseline just isn't really controlled. I've been on anti-inflammatories (meloxicam) for a year or so and can't come off them, and nothing's changing.
I had a phone consultation with my rheumy nurse this morning and I've been offered adding either hydroxychloroquine or sulfasalazine on top of the methotrexate. I said "yes please!" and now I have to pick one 😯
I've read all the info I can find, but there's not much comparing the two combinations. I've read mostly about each single drug, which is helpful but isn't really helping me pick.
So, I'd love to hear about anyone's experiences with these combinations, particularly if you've been on both at some point! Also, if you've come across any info comparing them, or even really anything about either of the combinations, that would be super helpful.
Many thanks and gentle virtual hugs 🤗
K
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tiff89
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I’ve been on both - ended up on triple therapy with MTX, Sulpha and Hydroxy. The order I was given them was MTX first, then hydroxy and then Sulpha. The reason given seemed to me to be that hydroxy was the gentlest of the drugs and might be enough to tip me into a state of control.
It did help, but not enough so Sulpha was added which did get me there. However when travelling in the other direction and trying to taper off drugs I didn’t notice much when I tapered off Sulpha, but I sure did when my dose of hydroxy was dropped.
Just one person’s experience and there’s no right or wrong answer as we are all so different!
I started on Methotrexate and Hydroxychloroquine and went up to the maximum dose of both. Sulphasalazine was then added and seems to have been the missing piece of the puzzle for me but who knows if it would have worked as well without the Hydroxychloroquine?!I was told by a rheumy registrar that Hydroxychloroquine isn't very strong in itself but that it's a good "enabler" which means that it was helping the Methotrexate to be more effective.
Ooo yes, I read that, which I thought was really interesting, and a big plus on my pros and cons list. I'm planning to ask the nurse about that at my appointment tomorrow
I’ve been on all three for a couple of years and have had no problems. How effective the combination is, is hard to say because I’ve not had experience of withdrawing one, or more. I still have symptoms of RA, but manageable.
Hello, I started out on hydroxychloroquine and methotrexate. No side effects from the hydroxy (seems like the least horrible of the RA drugs!) On the other hand the combination didn’t work for me and I’ve just started on bio similars. Good luck with your treatment!
It's good to hear you didn't have any side effects with hydroxy, it sounds like it's generally well tolerated, which is going in the pros column on my list I hope the bio similars work for you!
Hydroxychloroquin made a huge difference to my overall baseline once it was added to my mtx and Prednisolone. I was eagle to get the pred down quite low and although I’ve now added Adalimumab too I have a niggling feeling that it’s still the mtx and hydroxy that are doing all the heavy lifting!
A few years ago I was given Sulpha to go with my MTX . I thought I was doing ok but fortunately my partner noticed a downward depression.. this continued until she wrote a letter highlighting the problem.. I was then moved onto COSENTYX which has worked well..
Oh dear, that's an awful and quite worrying side effect! Your partner sounds amazing, taking action to get you help. I'm glad you have that support and are doing well
I had methotrexate injections and hydroxy I have tinnitus that was getting so loud ! Read something about hydroxy and tinnitus so they stopped hydroxy so far so good for my rheumatoid however still have the loud tinnitus!
I was started on both Hydroxychloroquine and Mtx. It took over a year to get the right dose of Mtx, changed to injections and that made the difference. I'm still on both hydroxy and mtx and am relatively controlled. The rheumy was going to add sulpa next if the injections didn't improve my symptoms.
Switching to mtx injections made a massive difference to me too, went from awful to amazing for about 4 years before it started creeping back in again. Fingers crossed that a second drug will get it under control again
Obviously everyone is different but I was on a combination of sulf and mtx and it worked well for me for quite a while, but started with sulf first then mtx was added. Im surprised you have to choose though- I would have thought it's for a consultant to make a decision about what is the most suitable drug for you.
Yeah, I had to pick my first drug too! I was offered either methotrexate or sulfasalazine when I was first diagnosed. I picked mtx and it worked well for several years. I've ended up with the impression that there isn't much to guide them on what will work, as we all react differently, and so maybe the decision should just be on what side effects we think we're most likely to be able to handle!!
I've only been on monotherapy HCQ & it failed me but the next DMARD I tried was MTX. That I’ve tried double therapy MTX with SSZ, which I gave a good go but it eventually was stopped as it caused my mood to drop, quite badly for me. The next I tried was MTX/LEF which also had to be stopped but it was nerve related. I'm still injecting MTX but monotherapy alongside low maintenance dose prednisolone, plus etoricoxib & others.
I hope whichever you choose brings you under control. Obviousky these were my experiences, nothing to say you'll have similar ones, you may do very well, I hope so anyway. This might be interesting reading ard.bmj.com/content/64/9/1252
Ooo, yes, thank you! A paper *rubs hands together in anticipation* I'll get stuck into that tomorrow 😁 I've been looking for trials and similar, but the abstract suggests what I was starting to get the impression of, that there's a lack of data. Then places like this can help fill the gap a little, with discussion, support and experience 🥰
Hi there , going by my experience those drugs were really bad for me as a lot of my skin started peeling off and I had to come off of them as I had allergic reaction, this was a good few years back but I now have been given Olumient (barasitinib ) biologics to take every day and they have been amazing with the meth injections it has taken pain away a lot especially in wrists and hand so no need to wear splints. but I do think it is trial and error trying to find something that works for you as we are all so different. Wishing you lots luck and good wishes xx
Yes, I think that's the main lesson I've learned on here, that everyone's responses are so different, and to keep trying til something works! I'm very glad it's working out for you now
Hi tiff89 been on metho and Sulphasalazine for about 6yrs now. They can make you sweat a lot, but they have kept other symptoms at bay. For me it would be the Sulphasalazine because they are coated and help protect your stomach. But you do sweat lots.
😕 that doesn't sound fun, I'll add it to the cons column! The main reason I want to come off the meloxicam is that I'm worried about long term effects on my stomach, so it's good to hear that sulfasalzine is protected against that Glad it's working for you
Hi Tiff89, I had to make the same choice last month. I chose to go with HCQ, just because it is milder and might help Mtx that I am already taking. It's only been 2 weeks since I started it though and I am also on low dose Pred for a month (started with 10 mg down to 5mg now) which keeps everything under control, so not sure if HCQ has had any effect yet. I guess once I taper off Pred, I will find out. So fingers crossed!Hope whatever you end up choosing works for you! Good luck!
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