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Meredith
07-03-2013, 02:20 AM
My doctor put me on Leflunomide in May (I had my last Rituxin treatment in 2012). He was hoping that this would prolong having another one. I can't tell you how great a move this has been. Went to my throat doctor last week and he said there was no inflation showing, there had always been some before. Not only do I feel good but I have been so much more active. (I am on 5mg Pred., bactrim, nexium). I think maybe he has found another treatment for Weg's. I see him at the end of July and can't wait to see my bloodwork numbers.

Alysia
07-03-2013, 03:27 AM
Hi.
my doc also wanted me to take it (it is also called Arava) but then he decided do do RTX. Im also on pred + MTX.
can this med replace MTX ?

Meredith
07-03-2013, 03:51 AM
Sorry should have said inflammation - it was my undestanding that if MTX did not work that then you would go to the RTX. I was always on cytoxan for a long time then we did the RTX. I had good luck with the RTX but the longest it lasted for me was approx. 14 months. I can't believe how good I feel. My hope is that if everything looks good he will back me off the pred's.

Alysia
07-03-2013, 04:38 PM
Sorry should have said inflammation - it was my undestanding that if MTX did not work that then you would go to the RTX. I was always on cytoxan for a long time then we did the RTX. I had good luck with the RTX but the longest it lasted for me was approx. 14 months. I can't believe how good I feel. My hope is that if everything looks good he will back me off the pred's.
I understand that rtx is givven every 6 months. How was it with you?

Meredith
07-03-2013, 10:28 PM
I did not have any problems at all - had 4 infusions the 1st time (1 a week), then approx. 14 months later had 2 infusions. It takes a while for the RTX to start kicking in which I really thought that was a miracle drug now the Leflunomide might be beating it -

LisaL
07-20-2013, 02:56 PM
I was taking mtx then my doctor added arava but I ended up w/ a csf leak and two surgeries. I don't believe the arava had anything to do with the csf leak. Now I just had my second round of rtx infusion was feeling better but now feeling sick (Kids had cold). I'm wondering if I should try the arava again in a week? I spend the whole day in bed after I take the mtx. Let me know how the arava works for you. No one heard of using it for Wegener's when I talked about it months before.

pberggren1
07-20-2013, 03:01 PM
What is Arava again?

LisaL
07-20-2013, 03:22 PM
Leflunomide belongs to the class of medications called immunomodulators. It is used to treat some of the symptoms associated with rheumatoid arthritis, such as inflammation, swelling, stiffness, and joint pain. It works by blocking the body's ability to produce the immune cells that cause these problem

pberggren1
07-20-2013, 03:23 PM
Yup, okay, I know a few that are on it but don't know if it works or not.

Meredith
07-30-2013, 05:35 AM
Just got my blood work back - best it has ever been but my liver test showed "it was not happy". So I started researching and found out that there are multiple things that can cause stress on your liver. I had shingles from Feb thru end of April, on paid meds the whole time. So pain meds can cause issues with your liver. I have been cutting back on sugar and using artifical sweetners, have stopped that now. Eatting more fruit and drinking more water. I am not a big drinker but probably drink 2 glasses of wine a week. Hope it was just the pain meds and not the Leflunomide since everything else showed such a marked improvement. Go back in 2 to 4 weeks for another blood test. Anyone else have liver trouble?

Alysia
07-30-2013, 01:08 PM
Hi,
my liver functions were out of norm because of sulfa (I had to stop taking it). they are also out of norm when I'm having a flu or some virus.

drz
07-30-2013, 03:50 PM
I had to cut back on both my azathioprine and pravastatin to get liver enzymes back in tolerable range. I also need to try avoid other meds that put a heavy load on liver.

mishb
07-30-2013, 11:38 PM
I had liver trouble which ended up being from the multi vitamins I was taking. Could have been any number or just one of a vitamin that was doing it - so just stopped taking them and within a month, the liver came good again.

I'm glad the Leflunomide is working and hopefully it is not the cause of the liver stress.

Maybe you should also cut out the wine until the next test and see it there is any improvement.

I hope by the next test, everything has settled down and all blood work comes back excellent - with a gold star on the report.

drz
07-31-2013, 12:50 AM
I also gave up wine for over a year when taking CTX cause wine or any alcohol does put an extra load on liver.

Mizamonie
08-04-2013, 03:51 AM
So glad to hear that you are feeling good. It's nice to hear something positive is happening.

Meredith
08-16-2013, 05:29 AM
Just got my 2nd test results back - liver tests were normal. The only thing that I can think I did wrong last month was that I had gone to the beach for a week and did not drink the normal amount of water I should have. From now on I will make sure that does not happen again.

mishb
08-16-2013, 04:31 PM
Thats good Meredith.

So you can continue drinking the wine :flapper: :biggrin1: