Hi! Gosh I'm sorry to hear about your terrible weekend . I'm very surprised to hear about someone on Arava so long.
I had Arava added to my treatment plan of Rituxan because I was not doing very well. It appeared that the Arava was going to work out ok. The things that happened with me were abdominal discomfort with severe diarrhea for the first week and again with dosage increase. I also lost about 50% of my hair volume. Then a strange facial rash that comes and goes, and tingling, prickling feelings in my legs after walking or exercise. I had to stop taking and my rheumy said that a lot of people wind up just feeling very bad and not doing well with Arava. I only took for about 7 mos and side effects will last for a long time.
I'm assuming your liver function was ok too? I hope you can get some answers as this has been a mystery medication AND I'm sure it has been a scary time!
Take care of yourself and stay in touch - Debora

I had to quit Arava shortly after starting on it. It gave me horrible diarrhea and a weird squeezing sensation in my chest.

I've been on Arava for 10 days. So I'm not exactly an expert. I've had just about every side effect listed, but not for long. Dizziness, then nausea. Then muscle pain like the muscles were being torn off the bones and detached from the joints.

I just realized tonight I am getting migraines, which for me, is caused by my stomach getting damaged. So I am probably going to go off. But no diarrhea, because the morphine is making me so much the other way, I am literally normal.

Oh yes, since I went on the drug, I have totally lost my appetite, in spite of the prednisone. I have lost 3.6 lbs. My goal is to stay on Arava till I lose 50 lbs, even if it never helps my RA! LOL

After all, prednisone put all this weight on, Arava can dang well lose it!

I was on Arava for a couple months. It didnt help me at all. It gave me daily headaches and that was about it

allergic, hives and swelling.

it's supposed to be methotrexate's newer twin but I was allergic.

depot

It made me incredibly sad. I know it's weird, but I cried all the time while on it. It also made my hair fallout for almost a year when I had only been on it one month. My Rheumy even RX'd the drug (Cholestyramine) to eliminate it from my system and my hair still continued to fall out!

Maybe you should ask your doctor about Cholestyraming?

Leah

To leahdh: did you lose an extreme amount of hair? I did. So much that I've been considering a wig. My dr said the elimination med is not worth what it would put me thru. He only uses it in cases of liver toxicity and pregnancies. He also said it's not guaranteed to stop the side effects I was experiencing either.

I had very long red hair I constantly got complimented on. After that Arava I had to cut it to my jaw line to give the look of some volume and I hardly have any bangs they are just straggly. The quality of my hair is just bad overall so I started putting coconut oil on it last wknd I'll do that once a wk now to see if there is a change. It has really made me sad on top of everything else.

So sorry you went through the hair loss also. It is VERY depressing. I lost about a third of my hair and a lot in the front/bangs as you did. I don't have bangs now, just growing out what is left to the side. It really hits your self-esteem to lose your hair. I started taking Biotin and Folic Acid, but not sure they helped. I have Hashimotos also and my hair was in it's thicker mode when I started the Arava. It's a good thing or I would definitely need a wig. I did cut off about three inches which helped.

I guess Arava can stay in your system for up to two years. The Cholestyramine powder was orange flavor that you mix in water/beverage. I had to watch when I took other meds and take them around it. You do it three times total. I had no side effects and it didn't taste yucky either. In fact I felt better while taking it.

Do you still have your gall bladder? I'm sure they checked that. Hope they figure it out!!

Leah

I started taking Arava in 2008 when I developed RA and because of a blood disorder (G6PDD) could not use many of the other drugs. It worked and I was on it until 2011. Yes, I lost my hair and that was the most difficult(when I told my rheumy I thought it was making my hair fall out she said Arava doesn't do that. After researching of course I found out it does cause what they call reversible alopecia, but mine has not recovered and I now have to wear wigs). I hate wearing wigs but the the bald spot is right on top-as a woman this is hard to handle. I was off Arava with doctors permission, and in remission until December 2014 after a major family stress episode and changes in medicine that had caused problems with my heart for my BP. They kept trying different meds and my pressure was out of control for six months. I went into a major flare and started back on Arava plus prednisone. Almost a year later things are finally calming down, but I don't think the Arava is working as well as the first time. I also think I may now be dealing with carpal tunnel because of the swelling for so long in my wrists so I have to deal with those symptoms too. Oh well. Hopefully my new rheumy will be helpful, he's really good so far.

I took it for about ten months and felt better than I had j in 6 years but it started making my legs ache so I had to stop. I've not felt as good ever since.

I had to quit Arava because my blood pressure went sky high. I had only been on it for about six weeks. I've been off for seven days and the BP is looking much better. I learned that you need to monitor your BP because 10% of people will get really high BP. My doc doubted me so I called the manufacturer of Arava and the pharmacist there confirmed the 10% number.

I have to wait a month to get into my Rheumy to see what to do next. Now hanging on on 7.5 mg of prednisone.

So all that hair in the shower the other day is Arava? So sad. I have so little hair left from the other meds. I do think it will be a wig soon for me, too.

I used to have thick brown hair. It went gray, which is fine, but it is so fine, and there is so little left, I cry when I wash my hair. I also put off washing it, because that is when I really notice how bad the hair loss is. Sigh! So do I want hair or no RA pain? I guess no RA pain. I've run out of options.

I'm going to find my bp machine and test it. Nothing like high bp to be a silent killer! Thanks Steppiemum for mentioning it.

Saw my Rheumy yesterday because of continued abdominal pain. He said it was not from the Arava but had me stop it anyways as well as my Celebrex. So here in about 3 days I should feel even worse with terrible joint pain to add to my nausea and abdominal pain. Also got a redraw of blood work. Liver enzymes remain good. My Rheumy tried to send me back to the ER to see a surgeon but I cannot afford another visit so here I am. Ugh!

Hi RNMomof2 (cute name!!) and everyone -

I too have taken Arava, and I really really did like it, it felt to me to be a cross between prednisone, celebrex and a pain reliever all in one. My liver enzymes went way too high, but I do have non-alcoholic liver disease and gallstones, and it could have been those two conditions flaring up - causing an increase in liver enzymes. I didn't want to stop taking it, because it takes so much energy to keep starting and taking RA meds and then getting your hopes dashed!!! Bummer!!!

All meds have side effects so in retrospect, I wish I had taken it every other day or something because it did help me, energy wise and pain wise and i was able to do more when I took it. I could walk better and that made me feel better and in more control of my life.

It's true, I did lose some hair, but RA can itself make you lose hair just because of the inflammation effect. I wish I had tried to just take less of the Arava. little bitty baby steps because we have very tender autoimmune systems now.

Thank you for this post!

hang in there everybody

I have been taking Arava for about two years. It works very well for me. I did have to stop taking Celebrex due to high BP and tummy issues. So sorry to hear about all these nasty side effects!
Lynne