I started Leflunomide 20 mg today, along with 2000 mg of Sulfa daily. I had no success with the MTX (7months) and Sulfa(5months) Combo. Hopefully this new combo will be successful!
I decided to take the Leflunomide in the after noon as I take the Sulfa morning and night, this will break up the meds a bit. Does anyone have any tips on this medication? Should I still continue on the Folic Acid?
Any feed back would be greatly appreciated :-)
Thanks,
Tara
Ask your doctor to be sure... mine said whenever u are on methotrexate... u must be on folic acid.. not sure about with what you are taking....
Sinc..
Karen
20mg seems high for leflunomide, I've only heard of 10mg as the highest dose.
I've been on leflunomide for about a year total (with a 6 mo. break while trying a new med, because my liver enzymes were slightly elevated).
I tolerate it 1000x better than MTX. I have once a day very loose stools, and then I'm done (diarrhea is the most common side effect). Keep some Immodium on hand if you have something important and you're not sure how your body will react to the meds in the first few months.
For me, the leflunomide seems to help about 10-20%. Not much, but at this point I'll take ANY improvement.
Oh, forgot to mention it takes awhile to build up to therapeutic levels.
Thanks Marietta,
20mg daily was going to be my loading dose and I was originally going to take 10mg with 25mg MTX but since I'm no longer taking MTX my rheumy said to stay at 20mg daily. I haven't had any real relief from the meds thus far, other then the pain levels during a big flare have been slightly decreased. Today I have more overall consistent daily pain then when I started taking meds almost 9 months ago. If there is no success with this then it sounds like we will be switching over to Biologics.
Marietta said:
20mg seems high for leflunomide, I've only heard of 10mg as the highest dose.
I've been on leflunomide for about a year total (with a 6 mo. break while trying a new med, because my liver enzymes were slightly elevated).
I tolerate it 1000x better than MTX. I have once a day very loose stools, and then I'm done (diarrhea is the most common side effect). Keep some Immodium on hand if you have something important and you're not sure how your body will react to the meds in the first few months.
For me, the leflunomide seems to help about 10-20%. Not much, but at this point I'll take ANY improvement.
Oh, forgot to mention it takes awhile to build up to therapeutic levels.
I'll put a call into my pharmacist. Thanks Karen ;-)
Karen said:
Ask your doctor to be sure... mine said whenever u are on methotrexate... u must be on folic acid.. not sure about with what you are taking....
Sinc..
Karen
Hi TaraLynn, I have taken leflunomide for about twenty months. Initially 10mg a day then the dose was increased after about six - eight months to 10mg/20mg alternate days. 20mg daily is, I understand, the maximum dose. It started to work for me after I'd been on it around seven weeks and I had three months of pretty good remission before the aches started to come back, hence the increased dose. I stopped it at the end of December due to high blood pressure, another side effect but the only one I had from it, and also because it wasn't controlling the PsA even when I went on to Humira as well.
I used to take mine at night but for no reason other than to take it separately from my blood pressure meds. And I didn't take folic acid with it ... stopped that when I stopped mtx. But this is worth checking with your doc. If I remember rightly I don't think you can od on folic acid as surplus is excreted in your urine.
Good luck with the leflunomide and hope that in a few weeks you'll be reporting an improvement to us all.
Just FYI, you can take leflunomide WITH biologics. I've been taking mine in conjunction with a few different ones as we keep trying to get my disease under control.
TaraLynn said:
Thanks Marietta,
If there is no success with this then it sounds like we will be switching over to Biologics.
Thanks Jules, glad you had some success...even if it was a short course. I am have low blood pressure and have had for years so an increase in blood pressure shouldn't be a problem. Crossing my fingers this combo works :-) I believe your correct in regards to the folic acid, any excess is excreted in urine. Thanks again :-)
Jules said:
Hi TaraLynn, I have taken leflunomide for about twenty months. Initially 10mg a day then the dose was increased after about six - eight months to 10mg/20mg alternate days. 20mg daily is, I understand, the maximum dose. It started to work for me after I'd been on it around seven weeks and I had three months of pretty good remission before the aches started to come back, hence the increased dose. I stopped it at the end of December due to high blood pressure, another side effect but the only one I had from it, and also because it wasn't controlling the PsA even when I went on to Humira as well.
I used to take mine at night but for no reason other than to take it separately from my blood pressure meds. And I didn't take folic acid with it ... stopped that when I stopped mtx. But this is worth checking with your doc. If I remember rightly I don't think you can od on folic acid as surplus is excreted in your urine.
Good luck with the leflunomide and hope that in a few weeks you'll be reporting an improvement to us all.
I kept taking the folic acid, 3mg/day, as well as adding in biotin, due to some hair loss that the leflunomide caused. Not sure if it matters about time of day for leflunomide, it stays in your system a really long time, so it may not really matter.
I started off on 20mg/day, then had to back off to 20mg every other day, because I wasn't just off to the bathroom once a day. . . I was in and out for up to 3 hours at a time. It was taking over my life. That said, it was really working. I've recently gone back up to 20mg/day with no increased side effects, but no increased benefit either. It's been almost 4 months now, so clearly I've built it up.
Definitely ask your rheumy about continuing the folic acid as well as timing. My guess is timing isn't important, and to continue folic acid.
Good luck with it.
thanks Stoney...I see my doctor tomorrow but I also have a feeling I should remain on the folic acid as I have been having a lot of issues with my mouth...maybe due to not taking it. So far no big issues...a little stomach upset yesterday and sore throat along with finding breathing difficult when moving but may be a virus. Will have it all checked out tomorrow. Thanks again :-)
Stoney said:
I kept taking the folic acid, 3mg/day, as well as adding in biotin, due to some hair loss that the leflunomide caused. Not sure if it matters about time of day for leflunomide, it stays in your system a really long time, so it may not really matter.
I started off on 20mg/day, then had to back off to 20mg every other day, because I wasn't just off to the bathroom once a day. . . I was in and out for up to 3 hours at a time. It was taking over my life. That said, it was really working. I've recently gone back up to 20mg/day with no increased side effects, but no increased benefit either. It's been almost 4 months now, so clearly I've built it up.
Definitely ask your rheumy about continuing the folic acid as well as timing. My guess is timing isn't important, and to continue folic acid.
Good luck with it.
Thanks Sybil :-) We are on the exact same meds! I'm also taking 20mg Leflunomide daily, along with 2000mg Sulfa. I take the sulfa morning and night and the Lefunomide at lunch. Just started my third week and finding this way more tolerable then when I was on the MTX. As far as joints, I believe it is too soon to tell as I haven't seen any big improvements thus far but crossing my fingers this works! I talked to my doctor and he said to stay on the folic acid if it is helping with the mouth issues and it is, so I will remain on it for a while longer.
sybil said:
Hi, I'm on 20 mg Leflunomide daily - not as a loading dose, permanently I believe. I've been taking it for 3 weeks and was under the impression I no longer needed Folic Acid, I thought that was just an Mtx thing.
I also take 2000 mg Sulfasalzine daily & have done without any problems since last June. I'm beginning to wonder if the Leflunomide is making me more sensitive to Sulfasalazine which I take morning and evening, as I'm starting to feel nauseous before my lunchtime dose of Leflunomide but okay after.
But overall I've no real concerns & time of day doesn't seem to make much difference to me. Hope Lef does the trick for you, TaraLynn - I think I notice some slight improvement but not enough as yet.
I believe if this combo doesn't work, we will be going on to Bio's. Leuflunomide is my 4th Dmard trial. I have done a bit of research and mentioned I'd like to start with Enbrel as it is one of the older Bio's, my Rheumatologist said I should also consider Humaria too as it's a bi-weekly injection and has been around for a while too. I really do hope that we both find this current combo works.
sybil said:
Lets hope it works out for both of us - we'll compare notes. I'm also looking at biologics if there's not significant improvement in a few months time so we are on very similar paths.
TaraLynn said:Thanks Sybil :-) We are on the exact same meds! I'm also taking 20mg Leflunomide daily, along with 2000mg Sulfa. I take the sulfa morning and night and the Lefunomide at lunch. Just started my third week and finding this way more tolerable then when I was on the MTX. As far as joints, I believe it is too soon to tell as I haven't seen any big improvements thus far but crossing my fingers this works! I talked to my doctor and he said to stay on the folic acid if it is helping with the mouth issues and it is, so I will remain on it for a while longer.