Medication

[seasailor]

Methotrexate or Sulfasalazine? anyone been on both of these at some point and could say pros and cons of them?

[Hidden]

I’ve been on MTX for 4 years. Tablets first then injections last September. Tried sulfasalazine but I had a severe allergic reaction . I did good on the MTX until February this year and started having extreme tiredness after dose for up to 5 days a week and once I slept 36 hours straight. They took me of it for 4 weeks then reintroduced a much smaller dose all good now. I also started a biologic in January things much improved

[seasailor in reply to Hidden]

Thanks for that I’ve been on methotrexate for 4 months now experiencing some excess hair shedding so was thinking of Sulfasalazine but pain mgt on MTX is good do I’m not sure what to do

[Hidden in reply to seasailor]

Lots of people suffer with hair problems when they first start mtx for some it settles down others including myself have found supplements help. Mtx is the gold of DMARDS and others are normally added along side rather than an alternative ( unless I you have very adverse side effects eg. Liver problems) 4 months is still quite early for any real improvement it tends to be slow and steady

[seasailor in reply to Hidden]

That’s good to know MTX appears to be the gold standard BUT I don’t want to be bald 🤣 what type of supplements did you take to help with hair loss, if you don’t mind sharing I know everyone is different so no pressure to reply

[Froggie70 in reply to Hidden]

Hi this is really interesting. I’ve been on MTX for six years and it’s not working as well now. Previous consultant was going to add in Azathioprine but moved hospitals and new consultant wasn’t interested in this. Had a telephone consultation a couple of weeks ago with a registrar in place of consultant as she is so busy and she said I must be mistaken as they never put someone on MTX and another DMARD at the same time. Is this not right?

[Hidden in reply to Froggie70]

No many people are on double or triple therapy. Mtx with Hydroxychloroqine and or sulfasalazine. In fact you have to have 2 failures on a DMARD before you qualify a Biologic (usually)

[Froggie70 in reply to Hidden]

That’s really good to know, thank you. I’m better prepared for my next appointment.

[Ferret18 in reply to Froggie70]

I was on MTX, hydroxychloroquine and Sulfasalazine for a while so the registrar is clearly mistaken. Had to stop MTX injections due to chronic nausea and now on Leflunomide as well as the other two.

[Froggie70 in reply to Ferret18]

Hi there. Thanks for replying, that’s really helpful, I did wonder how my previous consultant got it wrong as she was so good. I know what you mean about the nausea, I’m hoping that they will reduce MTX dose if I take something else with it. Thanks again 🤗.

[Ferret18 in reply to Froggie70]

I was fine on the MTX tablets which I was fine on. Then switched to 20mg injections, which were ok, then 15mg injections which completely floored me.

No rhyme nor reason to these things.

[Froggie70 in reply to Ferret18]

That’s strange isn’t it. Hope you’re feeling better on your new meds.

[helixhelix in reply to seasailor]

My hair thinned to start with on MTX, but that settled down over time and if now normal again. Can’t remember how long, but at least 6 moths I think.

[helixhelix]

I took both for many years. They are totally different drugs so a bit like comparing a lemon with yellow ball. MTX is recommended as the most effective first drug for moderate to severe RA. Sulpha is a gentler drug and is offered first for mild to moderate RA.

Both may give you side effects, but equally both can be side effect free. There is no way of telling in advance.

If you are female of child bearing age, and think you may wish to get pregnant (again), then discuss this with your rheumy before taking MTX. Not sure if same applies to men, but it could affect sperm too perhaps.

[BoneyC]

50 years of RA and 40 years of MTX orally and injectable and can say it's been the best drug for me.

[Belle76]

I was on sulphasalazine, but after a while it stopped working for me so was put on mxt only 1small dose and felt like I had been hit by a bus did not like it at all so was then put on lefludimide (Sorry about spelling) that was great for 6 months ish until bowel issues so back on sulphasalazine and biological, doing fab on this. Pain and swelling free and loads more energy. I have PSA

[Bookworm55]

I’ve been on methotrexate since diagnosis in Feb 2016 and sulfalazine ( to replace (hydroxychloroquine ) since summer 2019. A few mildish side effects with both early on but nothing serious. And for me they’ve worked very well.

[Knit12]

I was on sulfasalazine for 20 years, then I suffered massive stress, made redundant, packed up my flat and moved over 200 miles as I decided I would move back and look after my elderly mum. Within a month of returning home I had the biggest flare up ever with my RA. Total nightmare had to wait to get documents with new address before I could register with doctor before I could be referred to new RA Consultant. Eventually after more steroids than I could think possible I was put on methotrexate. First 6 months tablets and then injections. Unbelievable side effects, at 55 I developed acne all over my face. I was embarrassed to go out. All my core strength had gone and thankfully my rheummy nurse got me with the physios, where before this lockdown I was getting Pilates which was helping. Side effects of methotrexate was like nothing I’d ever experienced. Unfortunately the first biologic I had I developed gave me another rash. 4 weeks of my new one and touch wood things are finally looking better.

[Bully915]

O hello sailor. I'm on 10 of the little yellow pearls a week and 7 big orange bombs daily also retuximab twice yearly umpteen steroids injections and still the same

[Dibbers]

Hi, I was on MTX for about 6 months but couldn’t deal with the hair loss, which became excessive, and it was almost a year before it started to regrow. Luckily MTX didn’t work (nor did hydroxy) so I was taken off it and put on Sulfasalazine which has worked brilliantly so far with very few side effects at the beginning. I took and still take folic acid and biotin every day but it’s anyone’s guess if they work!

[seasailor in reply to Dibbers]

Thanks for that I suppose with everyone it’s trial and error but wish I had a crystal ball 🤣

[Olderguy]

Hi seasailor, I was prescribed mtx just over a decade ago. This, along with folic acid was a real turning point in my fight against PA. Slight thinning of hair, but not substantial. Five years ago, I started bio (Etenercept) in conjunction with mtx. Three years ago, I experienced a huge flare and was left with a persistent cough. Following a chest X-ray and CT scan, I was diagnosed with pulmonary fibrosis. My total medication was halted for a period of six months. Afterwards, my bio was commenced (Amgevita) along with Sulphasalazine. So far, so good! I was always aware of the possible consequences of taking these drugs but their benefits have far outweighed my concerns. I would do it all again, but I would advise myself to be very aware of side effect, particularly with persistent cough and lung function. The combination of these treatments along with bilateral knee replacements (due to long term damage) have transformed my quality of life. For me, the trade off has been a personal triumph. I hope all goes ok and I wish you well.

[seasailor in reply to Olderguy]

Glad to hear you have come through all that and still sounding positive

[Mattsdog1]

I started on sulfazalazine 2018 but was taken off it as it depleted literally all of my white blood cells so I wouldn’t have had a defence against catching anything. I had to wait about three months to go on methotrexate tablets then injections that’s when my blood tests went normal from Anya 👋

[bubblyalex in reply to Mattsdog1]

Is white blood cell count a reliable indicator of the immune system being functional or not? Ie if you’re in the normal range (I need to check if I am) but on high dose pred and a DMARD then you’re not immunocompromised?

[Mattsdog1 in reply to bubblyalex]

Hi yes we need white blood cells to fight anything we catch like colds virus etc when I went on the methotrexate injections (must have suited my body better ) as that’s when my blood tests all went normal as I have tests every 2 months although it’s been 4 month with the virus going round, presume you have regular tests too, take care

[bubblyalex in reply to Mattsdog1]

I do and I’m now wondering why I’m being told to shield because I’m immunosuppressed if my white cell count is in the normal range despite the high dose prednisolone. That said the level of asthma also apparently means I have to shield. You take care too 🙂

[Hidden]

sulfasalazine made me nauseous and lose my appetite