Any advice please?

[annie1954]

Hi I have been taking Hydroxychloroquine (2 daily). I am due to see my consultant at the end of this month. They asked me to read up on Sulfasalazine and Leflunomide so assuming they may put me on one of them.

Has anyone taken them and how did any of them affect you? Was there any awful side effects ?

Would be grateful for any replies xx

[binlid]

sulpha made my legs bad was on 4 a day reduced to 2 and ok lefumoide caused me breathing problems sowas taken off them so now just metho and sulpha good luck x

[jeanjack]

Hi annie1954. I have been on sulpha for 5 years and have never had any problems with it. I have now added Leflunomide and have been taking it for nearly 8 weeks. It is working well and I like it much more than Methotrexate. The only side effect I am experiencing is discomfort in my stomach a short while after taking the tablet. It is not pain as such but more of a feeling of indigestion and bloating. I have just posted on this site a few minutes ago to see if anyone else has experienced the same so hoping for some replies. Other than that I am very happy with Leflunomide.

[annie1954 in reply to jeanjack]

Thank you jeanjack

A few people have said it effects their liver, and my selfish problem is I like a glass of wine when I go out for a meal, or sometimes at home, so my liver would have no chance !! I have packed up smoking, so a glass of wine now and then is my only pleasure. ??

Hopefully I will be like you and have no problems,.....

[jeanjack in reply to annie1954]

Hi, I too love a glass of wine so I know how you feel having to restrict myself. The leaflet says you can have 4 units a week which is 2 small glasses of wine so that is what I have. I will also have Cobra beer which is alcohol free and tastes good and Sainsburys do a 1% cider which is only 0.5 units of alcohol per bottle so I sometimes substitute the wine for cider. I have only had one blood test since starting on Leflunomide and it was okay so will see in the next few months whether my liver tests are okay. I did drink more over Christmas and New Year ( don't tell anybody!! ) but have abstained since so as to give my liver a rest. My next blood test is at the end of January so hope it will be okay. I am not quite sure but I think Hydro is about the only drug that does not affect the liver so really we do not have much choice if we want to be pain free.

[nomoreheels in reply to annie1954]

Sorry for jumping in here but have valid reasons! I haven't contributed so far because I've no experience of sulfasalazine or leflunomide though I have been on hydroxychloroquine). I've been on MTX 5 years & any increase above my regular 15mg elevates my liver scores. I don't drink only because it doesn't like me but if I was to I've little doubt it would show in my liver score given that an increase in dose does. In fact it has been queried on occasion when my score has gone up & I've been asked to not drink though never truly believed when I say I honestly don't! What I would do as you like the odd glass or two is to try & see how it affects your liver scores & if there's a slight or acceptable rise or none at all you know you can enjoy the odd glass without it affecting your liver. Worth trying, because I know if chocolate affected the liver I wouldn't be best pleased lol!

[jeanjack in reply to nomoreheels]

Hi nomoreheels. That's exactly what I am going to do as I am new to Leflunomide . ( no apologies for Christmas and New Year but you've got to have a life and it's only once a year!! ) I will stick to the recommended 4 units a week as per the leaflet and see how my test results are over the next months. Obviously if the medication affects my liver then I will give it up altogether as there is no point in deliberately giving myself another problem to deal with.

Hopefully I will be okay and I can continue to enjoy a glass of wine.

[nomoreheels in reply to jeanjack]

I think that's a commonsense approach. If your liver is fine with a tipple then all is well! There are recommendations regarding alcohol after all & it would be churlish not to adhere to them lol!

[KathleenB]

Been on sulphasalazine for years, other that yellow urine, so side effects.

[Nurseratchette]

I have been on sulph for 4 months no side effects but isn't working so well so going on lefluomide

[helixhelix]

I've been on sulpha for years, and yes the orange pee is a bit of a shock! But apart from that it's fine. It took a few months to get used to it, as a caused a rather embarrassingly excitable digestive system to start with. However that slowly calmed down.

I don't know about Lefluomide, but it is supposed to be very effective if it suits you, and probably more so than sulpha. nras.org.uk have information on each of the drugs which is worth looking at.

[annie1954 in reply to helixhelix]

Thank you Helixhelix

This is such a good site for all the help and advice, and it's great to know all the side effects on us all.

[Patsy-57]

I have taken both. Sulfasalazine affected my liver results even on the lowest dose, and Leflunamide sent my blood pressure up even with blood pressure tablets,

so didn't stay on them long.

Patsy-57

[annie1954 in reply to Patsy-57]

Thank you Patsy, it's helpful to have advice from every one, so I'm still not sure? It's a mine field out there with all the drugs. Will have to see when I go to the hospital.

[annie1954]

Thank you every one for your replies, hopefully I will try the medication and see how it goes. What is the best pain relief to have? As I am struggling as the pain wakes me up during the night, and have pain during the day to. I only have Ibuprofen and paracetamol which I take every 4 hours.

I really do need to sort this out at my next hospital appointment.

Annie

[jeanjack in reply to annie1954]

Hi, before I started on Leflunomide I was in a lot of pain and getting very little sleep because of it. I got co codamol on prescription from my doctor and it was the only thing that kept me going until I could start on Leflunomide. I could at least get a fairly decent sleep.

[emiliekofi]

Hi Annie1954

I have been on Sulfazaline now for 4 years with no side effects at all, my first was hydroxy which I couldnt tolerate,. I am still on sulfazaline but now mixed with MTX as it didn't become effective enough as a single drug. I had regular blood tests to keep an eye on my liver etc but I must admit I drank glasses of wine without any limitation with no effect on my liver at all. As long as you don't over do it and have the regular blood tests.

I hope the meds work for you.

Take care

Xxx

[shareasmile]

I have been taking leflunomide since last June and it has recently had an effect on my liver. I am also on Humira so I stopped leflunomide and will see if my bloods come back normal next time.