Anyone else?: I have been on sulphvalazine and... - NRAS

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Anyone else?

Gayle1969
Gayle1969
21 Replies

I have been on sulphvalazine and methatrixate, both of which I can not take due to side effects! I have now been prescribed leflunomide. Does anyone else take this, if so what are your thoughts?

21 Replies
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sjhewitt42

Hi Gayle,

I was on Lef for a couple of months which I couldn’t tolerate due to side effects but I know some people on here get on with it really well and it helps. I hope this is the case for you and you get some relief xx Sarah

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Gayle1969

Than you! The side effects have been teribble😢

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sjhewitt42

How long have you been taking it and what side effects have you had? x

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Gayle1969

Not started it yet🤞

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Gayle1969

Only 2 weeks but already have a sensitive bladder and it’s effecting it😩

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sjhewitt42

I’m in Azathioprine now as I couldn’t tolerate the other DMARDs and apart from a little nausea I seem ok on the side effect front. xx

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Gayle1969

I will ask about, thank you👍

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Sjhoney
Sjhoney
in reply to Gayle1969

Hi, can I ask what the side effects were? I haven’t been able to tolerate any dmards and am wondering what to do next! Rheumatologist has been very unhelpful 🙄

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Gayle1969
Gayle1969
in reply to Sjhoney

With sluf, I had bad depression and feeling of dread, mouth ulcers, tiredness, swollen joints in fingers. With methatrixate I had water infections, mouth ulcers, water retention, chest pain, feeling unwell. With both I had hair loss! Not started leflunomide yet but I’m dreading it😔

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Sjhoney
Sjhoney
in reply to Gayle1969

Same here, I get dreadful depression and anxiety which renders me unable to function. At least when I’m mentally well I can cope with the pain. Good luck xx

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Sjhoney
Sjhoney
in reply to Gayle1969

Hi Gayle, I came across our conversation as I’m now on lefluonomide and the anxiety is starting up again.

Did you start to take it and if so how did it go?

I’m not sure what to do now. I know I need to take these horrible drugs but it’s not easy when they make me feel so bad.

Sarah x

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Gayle1969
Gayle1969
in reply to Sjhoney

I’m hoping this works as will be in the same situation 😢

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poemsgalore1

I have been on Sulphasalazine, Methotrexate, and Leflunomide. The only problem I've had with Lef is it has caused high blood pressure (alog with other meds that increased my BP. Apart from that, all these drugs have really helped me. Still on MTX and Lef, but would like to swap Lef for Sulpha, but only because I'm worried about my BP.

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allanah

Taken it for many years with no problems at all. It really helps especially with swelling for me. Good luck x

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pool0009

I have been on methotrexate and leflunomide for 7 years now and working well for me with no side effects thankfully, good luck

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Legley

Hi Gayle1969

Ive been on leflunomide for 4 mths now.

No major side effects as yet .

Ive lost about 5 pounds in weight which is not a bad thing and my hair feels slightly thinner but no major hairloss taking folic acid so it helps to counteract effects of meds. Ive had a little flare up this week but not as bad as usual.

Hope this helps xxx

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katrina1961
katrina1961
in reply to Legley

ive lost weight which not bad thing but hair loss is making me depressed so reduced doseand waiting on follow up appointment

w

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ifxx

Hi, I‘ve been on Leflunomide for about a year now and haven‘t experienced any side effects. It hasn‘t really helped with the pain, swelling etc. either on its own but not having to deal with the side effects is definitely a plus about Leflunomide. Hope it works for you!

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SLEepyhead123

Started on plaquinel which didn't help so I was put on methotrexate injections and my new rheumatologist stopped the methotrexate and put me on sulfasalazine.... lots of side effects, emergency appointment and sulphasalazine stopped and heart and lung tests done to make sure no underlying problems. Heart all good, lungs slightly below average air intake. Go back to rheumatologist Friday so will see what she puts me on next. I have systemic lupus and rheumatoid arthritis and hypothyroidism. I hope your rheumatologist finds something that suits you. 💜

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