Hi Guys i finally got to see a new Rheumie this week, she was fantastic very understanding and supportive - took me of mtx which I am trilled about and has put me on Arava - which I will start after Easter - is anyone else on this and what side effects have you experienced????
Have a great Easter everyone
I was on Arava for about 6 months, and did well on it. I had mild diarrhea on it, but no other side effects. It helped about 30% with my symptoms.
(I stopped taking it because my twice a week Enbrel injections are helping a lot more, so I stopped taking the Arava).
Thank you - glad to hear no nausea - on mtx I was sick for 2 sometimes 3 days
One dose of MTX and I threw up for 3 days... I was very nervous about Arava but did very well on it... and I usually get ALLLL the side effects :)
Chez said:
Thank you - glad to hear no nausea - on mtx I was sick for 2 sometimes 3 days
Yes, I’m on Arava as well as mtx. It helped with one of my symptoms, but others have got worse. The only thing it does to me is it gives me daily diarrhea, just after taking it. I’m OK the rest of the day. No nausea. My new rheumatologists are putting me on Enbrel, and I understand that the plan is to discontinue the Arava at that point.
My biggest objection to Arava is that you must be very strict about abstaining from alcohol. Not extreme moderation. None. Period.
Good luck! I seem to remember reading that about 40% of patients get a good response on it.
I've been on Arava for almost 6 months. Overall, I've been happy with it. I had been on MTX for 6 months prior to that, but it didn't work. Side effects. . . When I was on the full dose, 20mg/day, within a few weeks it had built up in my system, and by 2 months I was having real problems with diarrhea. I had also started losing hair. We cut back to every other day, and the diarrhea is much less of a problem, only a day or two a week, as opposed to having the runs every day for a few hours.
The hair loss has slowed down, but my hair is definitely quite a bit thinner. Not too thrilled about it, but the medication works so well overall that I'm willing to put up with it. Apparently you need to keep taking folic acid with it, and I added in biotin.
I see Seenie mentioned complete abstention from alcohol. I have a drink a week typically, and my rheumy is okay with it, but I guess it also depends on whether you've ever had elevated liver enzymes.
Thanks for that I was wondering about the folic acid
Alcohol. Quote from my rheumy: “With mtx you shouldn’t drink. With Arava you mustn’t drink.” So I didn’t until I had a meltdown in the wine bar on the cruise. They had those nifty high-tech autodispensers of fabulous stuff. I decided to have 70mL, about 1/4 cup. I did that for 10 days. It was glorious. When I got back home and got my bloodwork done, I got a call from the doc to quit whatever I was doing differently. OK then.
Now, bear in mind that I was on 20 mg of mtx as well as the 10 mg of Arava.
Should say that nothing happened to my hair. I was hoping it would all fall out and then grow back in thick, coarse and silver. No such luuck.
Hmm. Now I'm wondering what my bloodwork will look like after Passover. I may have had all 4 glasses of wine (smallish) plus Elijah's glass. I'm going to the doctor tomorrow and getting blood drawn. I'll get back to you on that.
No no no, Stoney, don’t panic. If your liver values are up, it doesn’t mean there’s damage. It just means that there could be damage down the road if it continues. It will be interesting to see what the tests show, if anytthing.
I was on both arava and mtx, remember, which seems to have been about the max load that my liver could take. Make sure you tell us what happens!
No panic Seenie. Just a regular visit. I go every 2 months since I added in MTX to plaquenil and an NSAID last year, but I switched to Arava. I could see how the combo of MTX and Arava could be a bigger deal.
I also get to see the orthopedist tomorrow to check out my hips, which have been giving me trouble. I want to make certain to modify my activity if need be, as I want to try and avoid major damage. I know you've just been through this and are in recovery Seenie.
Oh, OK, LOL. But make sure you get checked out: avoid the path I ended up on if you can!
And take care. Mazel Tov!
What did you add the biotin for? I am starting mtx on Friday and have been taking folic acid in the hopes that having it in my system before I start will reduce the incidence of side effects. Just wondering if the biotin would be helpful too. Both drugs have similar side effects, right?
Stoney said:
I’ve been on Arava for almost 6 months. Overall, I’ve been happy with it. I had been on MTX for 6 months prior to that, but it didn’t work. Side effects. . . When I was on the full dose, 20mg/day, within a few weeks it had built up in my system, and by 2 months I was having real problems with diarrhea. I had also started losing hair. We cut back to every other day, and the diarrhea is much less of a problem, only a day or two a week, as opposed to having the runs every day for a few hours.
The hair loss has slowed down, but my hair is definitely quite a bit thinner. Not too thrilled about it, but the medication works so well overall that I’m willing to put up with it. Apparently you need to keep taking folic acid with it, and I added in biotin.
I see Seenie mentioned complete abstention from alcohol. I have a drink a week typically, and my rheumy is okay with it, but I guess it also depends on whether you’ve ever had elevated liver enzymes.
My rheumy added in the biotin due to hair loss. The goal was to see if it would help slow down hair loss. I had really thick curly hair, so we were joking that a bit of hair loss wouldn't be too bad. Except that it's thinned mostly around the hairline, all around, and at one of my temples it's pretty much all gone. So I still have lots of hair, but it's thinned. I wear a lot of hats or wide hair bands, as I don't really like the look. When I was on MTX I didn't have hair loss.
The side effects can be similar in terms of hair loss, but the primary side effect of MTX seems to be nausea and mouth sores for a lot of people, and for Arava it seems almost guaranteed that diarrhea is a side effect.
GrumpyCat said:
What did you add the biotin for? I am starting mtx on Friday and have been taking folic acid in the hopes that having it in my system before I start will reduce the incidence of side effects. Just wondering if the biotin would be helpful too. Both drugs have similar side effects, right?
Stoney,
Have you tried mtx while taking folic acid? I don’t care about my hair too much, but I want to avoid the mouth sores!
Stoney said:
My rheumy added in the biotin due to hair loss. The goal was to see if it would help slow down hair loss. I had really thick curly hair, so we were joking that a bit of hair loss wouldn’t be too bad. Except that it’s thinned mostly around the hairline, all around, and at one of my temples it’s pretty much all gone. So I still have lots of hair, but it’s thinned. I wear a lot of hats or wide hair bands, as I don’t really like the look. When I was on MTX I didn’t have hair loss.
The side effects can be similar in terms of hair loss, but the primary side effect of MTX seems to be nausea and mouth sores for a lot of people, and for Arava it seems almost guaranteed that diarrhea is a side effect.
GrumpyCat said:What did you add the biotin for? I am starting mtx on Friday and have been taking folic acid in the hopes that having it in my system before I start will reduce the incidence of side effects. Just wondering if the biotin would be helpful too. Both drugs have similar side effects, right?
GrumpyCat- I did take folic acid with the MTX. I had some mouth sores, but nothing too significant. That wasn't much of an issue for me. Even the unrelenting nausea wasn't so bad. The problem was that I had unrelenting nausea with no improvement of symptoms.
GrumpyCat said:
Stoney,
Have you tried mtx while taking folic acid? I don't care about my hair too much, but I want to avoid the mouth sores!
I switched from MTX to Arava a few months ago and it has helped my symptoms. I was on 20mg daily and the only side effect is a lot of hair loss. I am now on 10mg daily and hoping that helps. Besides that I havent noticed anything else.
HI Chez. How are you doing on Arava since starting? I was on it about 2 months, along with MTX. I had tingling forearms, hands, extra dizzy, couldn't be a passenger in a car, never mind the bus! Not sure if it added to hair loss, but that happened on MTX alone. Some meds work well for some, not so good for others. Hope it's helping you.
H meri, thank you for your reply,
I had to go off it for a Few months as I was having breathing problems which it seems was unrelated. I am back on it now and also on humeria. I think together they are working. I have been lucky I haven’t had any hair loss. While I was not taking anything I had a terrible flare up.
Regards Cheryl