Arava Experience? Need advice and input. | Arthritis Information

I hope this post finds you all well. I've been feeling ill since Friday. I posted a few days ago trying to figure out if it was a flare or illness. After going to my PCP yesterday - it was decided I have a virus. However, the "virus" is not subsiding. I'll feel better for a while, then it will hit me again.

I've been taking Arava for about three months. I've read that the side effects can hit you even after you've been on it a while and the side effects include nausea, diarrhea, headache, etc. I'm wondering if maybe my problem is the medication since it comes and goes.

Has anyone had any experience with Arava? I need some relief from feeling so terrible - I think I'll call my Rheumy today and tell her what is going on. I've not found many pro-active docs who truly listen, so it's always challenging when something is going wrong in my body.

I just wanted to see if anyone has had a similar experience or what their experience was with this drug. Thanks everyone so much again.

Jen

My biggest issue with Arava was hairloss. I ended up swictching back to
MTX.
I would call your dr. and let him know how you are feeling. If it is the
Arava maybe something else can be prescribed to lesson the side effects.

I hope you feel better.

Becky

Thanks Becky. My hairs has been falling out like crazy lately also! Fun fun! Thank you for your post - I appreciate it greatly. I left a message with my Rheumy to see what to do. Thank you!

Jen

I've been on Arava since November. I had suffered some hair loss but it seems to be getting better. My dr. did warn me about the diarrea and said if it is a problem to try taking Imodium. Why don't you try taking the Immodium for a day or two and see if you feel better? Maybe that way you can tell if it's a side effect or not. Good luck

It effected my breathing but i have intrinsic asthma so it just made it worse, it was one of the rare drugs that didn't cause the other odd side effects.

Always remember to go to your doctor when in doubt. You don't want to keep using a medication if you think it might cause your problems.

Don't forget, check any and all other medications to see if they are causing problems. Methotrexate is horrible for nausea, prednisone causes me to have periods over a month long (yah it sucks lol).

You just never know what might be working against you and be sure to check and see what over the counter vitamines you are using, any bone suppliments etc. as they too can have these odd side effects.

I am sorry to hear you are feeling so ill. If you are having a lot of diarrhea, be sure you are drinking plenty of fluids, if you get dehydrated that can cause headaches and ill feelings as well. Try to stick to a "white" bland diet, such as rice and bagels or potatoes for a day or two and see if that doesn't calm the tummy down a little. Flat Vernor's and graham crackers are a favorite when I feel ill. I have not taken that drug so have no info but wanted to send you a hug and a get well wish!! Jen,

I'm probably one of the very few who had an extremely bad reaction to Arava. I started Arava in October of 2000 and by February of 2001 I was no longer a functioning human being. It affected my liver (all blood tests were in the normal range and did not signal a pending problem) and suppressed my immune system to the point that I was no longer making red or white blood cells (treated with Procrit and Neupegen to jump start the blood cells or I would have needed blood transfusions). I had severe diarrhea (3 weeks) even though I could not eat anything (not nauseated or throwing up, just not hungry and having a hard time getting food down). I finally jaundiced (the worst French's Mustard color yellow you'd ever want to see) and my Rheumy did so many blood tests that I felt like a pin cushion (was tested for every form of hepatitis know to man as well as lupus and any other liver affecting disease). It wasn't until I had a liver biopsy (which they wouldn't do until I had an immune system - still got a staph infection)that it was finally determined that the problem was Arava and I started the process that removes it from your system. By the end of June, I was pretty much back to normal only 50 pounds lighter (heck of diet) and losing a lot of hair. So I guess you could say Arava is not for me - EVER. But I don't knock the drug because I know several people who are on it and they are doing amazingly well. I'm just one of the few who cannot ever take it(my Rheumy had to document my reaction to the drug for the FDA because my reaction was not among the known and documented reactions).

Between October and February the only thing that was out of the ordinary for me was the constant indigestion for which the Dr prescribed Nexium and continued my monthly blood tests. The other symptoms did not appear until February and it was down hill from there.

Today I'm fine except for RA and fortunately my liver was not damaged as result of my reaction to Arava.

I agree with Becky's advice of getting back to your Dr and letting him know how lousy you are feeling. The sooner the better. Are you going for monthly blood tests? Has he been checking your liver function (blood test) while you've been on Arava?

Sorry for the long post.

Marianne

Wow,I have been taking Arava/Lefludimide for years now and luckily I havnt had anyside effects.agatha39294.512962963

i take arava . i had taken it for over 12 months with no problems at all until i had to stop it for a while due to a lung infection . i was on high prednisone and 3 lots of antibiotics. when i started back on arava after the infection cleared ,i started getting an upset stomach. not bad but enough to be annoying. i am still taking it until i see my rheumy next to find out what the next step will be.

Thank you all for your input and information! I so appreciate it. I called my Rheumy and she told me to discontinue the Arava. But then she added that since I am moving, I should just control my RA with pain meds until I can establish myself with a new physician. That's not until the end of Sept - so I guess she sort of wiped her hands of me. Fun fun! Oh well, onward and upward!

Thank you all so much. I'm hoping these side effects go away soon. Ugh!

Jen

Jen,

Just got around to reading posts this AM and found yours. I am also one of the people who cannot tolerate Arava. It causes intractable diarrhea and weight loss. I have tried two courses of it, but both times it affected my GI system severely. I even ended up getting scoped because no one tied the symptoms to the Arava I'd been taking. I was having colitis symptoms and since my daughter has Crohn's, they wanted to be sure that I didn't have it as well. Once I quit the Arava...it took a few weeks to work it self out...I was back to normal.

It also lowered my LFTs the first time I was on it.

Hi jennifermichael

I was on Arava for over a year

regards gigabyte[ check my post on mabthera]

I had the same reaction as molly bee. Hospitalized for 3 days then taken by ambulance to another hospital for 5 more days. They tested me for everything and was scoped inside out and backwards. I was taken off the arava and am doing better, but its been a year and my abdominal pain still rears its ugly head. That pain was a definite 10 on the painscale, and I consider my childbirths an 8 - so that gives you an idea how badly I suffered.I also had bad stomach problems from the arava. I also got worse while I was on it. So the doctor took me off it and started another. It took over 2 months to get rid of the stomach problems from the arava. I too had stomach and liver problems. I tried it twice for a month each time, and had to stop.

I have been on Arava several years now. I started it when only name brand was available. I have not had any problems with it at all. Not even hair loss.

I have read that Arava and MTX have just about the same side effects.