Don't want to take Lefludomide

I have had to come off all the other dmards after 2-10 days because of severe reactions. The next one they want to try is lefludomide but after reading all the horrendous side effects I don't want to take it. I have to go to clinic tomorrow. Does anyone know any alternatives I can ask to try.

I always get gut related side effects so not sure why lefludomide would be a good next option apart from the fact it seems to be another cheap option for the hospital. I also already have higher than normal blood pressure

13 Replies

  • Hi

    I understand your reticence. I have high blood pressure, and diverticula disease, so I was a bit shocked to be given leflunomide. It took me a week before I actually took it, I was so scared!

    It's really been OK, my blood pressure is high, but it's lower than it's been previously. I was really worried about gut problems as I had chronic diarrhoea anyway. I just increased fermented foods and my stomach is fine.

    Sorry don't know what other options are. I've had sulfasalazine (hellish), I can't take methotrexate, so am now on leflunomide.

    It might not be as bad as you think?

  • Think of it as Arava and it works really well for me. I'm in remission why read all the side effects if you know it worries you. If 10% get them then 90% don't so its likely you won't get them !

    To be honest Lef is far from cheap look it up, the cost will surprise you its widely used in USA and its because its not cheap its not the first option here.

    If your allergic to RA meds then I do understand but side effects can be temporary as the body gets used to the new substance its being subjected too. I am allergic to Penicillin and thats life threatening and not the same as feeling slightly queasy etc for a few days. Do try not to read anymore stuff yes Lef can do a lot of thing like put you into remission take away the swelling and pain and relieve fatigue. Its always a chance it won't help you but you won't know until you try it.Lef did give me a lot of pain for a couple of weeks but it was so worth sticking too. Take with food or at night as like a lot of meds not just RA it can help along with a glassful of water. I do take Omeprazole with it to protect tum and absolutely no issues with that and I also have an odd tum as have Celiac disease too.

  • I've been fine on arava and take a tummy protector too . I also have plaquenil with no side effects xx good luck , just talk through your worries at the clinic x

  • I've tried hydroxycholquinine, methotrexate both oral and subcutaneous and sulfasalazine. Not lasted more than a week on any of them. Severe side effects mean had to have them withdrawn early :(

    Also allergic to Omeprazole and all anti inflammatories.

    Only thing I'm not allergic to is penicillin:)

  • Hard to understand, are you sure it is side effects as it might be the lactose or something like the medium that the actual stuff is mixed with. A week is not really long enough to give any a chance to work unless its an allergy. Did the RA consultant withdraw each medication as week its hardly in the system ? Not all medications suit everyone but a week doesn't give any a chance really.

  • I absolutely agree. I've been taking leflunomide since October. It gave me a bit of flatulence but that's bearable. These powerful drugs take a while for your body to adapt to.

  • Poor you. I don't react well to lots of medications either. However, there will be drug out there you will be able to tolerate.

  • Hi

    Leflunomide has been OK for me. I take mtx as well and much prefer the lefl re side effects. I've had relatively minor side effects with it......a little hair loss which has recovered now and I think only me and my hairdresser noticed, and a slight upset stomach.......again ok now.

    Your team will want you to take a Dmard even if you move onto biologics as it has been shown that taking a Dmard alongside the biologic helps prevent us building up antibodies to the biologic and so helps it to keep working. I am now on a biologic which is working well and I want it to stay that way if possible! I think some biologics are only prescribed providing you are taking a Dmard as well. Your choices may be limited otherwise.

    Even if you get side effects at the start, they often diminish as your body gets used to the drug.

  • They put me on Leflunomide but I had to come off it after a few weeks as my blood pressure went very high. Up to that point I had never had a problem. They took me off it and have now had two infusions of Rituximab. They have to go through the various meds before you can be put forward for a biological treatment. Sounds as though you are heading that way. Hope it works out for you .

  • The consultant has taken me off each time. It's severe allergic reactions rather than minor side effects. I am considering asking to try the subcut methotrexate with non synthetic folic acid and curcumin rather than jump straight to lef

  • hi I suffer with RA last year I was in a very lot of pain and my eyes had flared up. I was on methotrexate only I was offered to go on enbrel which I thought about a lot. I finally went on it and it has helped although there are side effects. If used can get some pain relief it's something.

  • So here is an update on my appointment today.

    I suggested to the consultant that I was not keen to move on to lefludomide. I suggested that perhaps I rechallenge the subcut methotrexate but instead of taking the prescribed folic acid. I take the methylfolate version just in case I have the gene (common in white European people) that prevents the absorption of synthetic folic acid. I suggested I combine this with natural version of B12 and also 500mg curcumin extract (research showing promising results with combining curcumin and methotrexate the curcumin is and anti inflammatory but also seems to have protective results on the liver and kidneys of people taking methotrexate.

    The consultant said go for it. So I will try this and if it doesn't work move on. The nurse and the consultant were worried about the lefludomide with my blood pressure and but issues

  • Or even gut issues lol

You may also like...