I was hoping some of you might be able to help. I just got back from the Doctor and because my disease is not under control we needed to make another change. I have had side effects from mostly everything I have tried, so he is putting me on ARAVA. I have been reading on this drug and also got a pamphlet from the pharmacist. But I would appreciate hearing from those of you who have actually taken this drug longterm. Kind of scares me but then all of the drugs effect me like that until I am actually on them and doing better. The liver side effects and the Neurological and a breathing problems that insue are what stops my taking most of them. Thanks so much for you information. Hope you are having a good day! Susan LeeI am not on Arava but my mother is. She has been on it for about
4 or 5 years. She has really good luck with it mixed with the
MTX. She has had little to no side effects from it. The
Arava has been her best med. Again, it is one of those things
that depends on the individual response, I think.
I took Arava after having been on Mtx. I took it for about a year but
stopped due to thinning hair. It was coming out in the shower,
brushing...anytime. I never had that problem with the mtx.
beckyI haven't taken it, but I'm about to - it''s my next step up from MTX. Not thrilled about it, but I'm getting worse again, so it's time to do something.
Hi! I am on Mtx 15 mg. and Arava 20 mg. daily. I have had no problems so far. I have been on both for over a year. Good Luck!!!Thanks everyone...Doesn't seem scary when you hear that it has been a help to others! Take care and have a good evening! Susan LeeI took Arava for 3 years - best drug I ever had for my RA. Then I found I was in liver failure from it. Apparently my doctor "forgot" to call me when my liver enzymes started to go bad. He had told me previously that when liver damage with arava shows up inthe blood tests, it's already too late and it's irreversible. Now I have cirrhosis of the liver, but the damage is not progressing after I stopped arava. All my docs agree the damamge is from arava. I sugest you take it, cause it's a great drug, but be sure to be vigilent about your blood tests and make sure you find out each time what the tests show. Don't depend on your doc to track it for you.That's really good information, Kathy - in the end, no one suffers but us when things go wrong.
Hi Susan, I have taken Arava as like you I have reactions to all the others, with Arava, I was on and off it for about 2 years. I mostly came off it quite regularly due to terrible diarrheoa, and chest infections, but I got chest infections from every Dmard, I have to say though, it really does work and they have a support service (the pharmaceutical company "Aventis"). A nurse phones you regularly to help you with any queries, questions, or worries you may have. You fill in a form when u first start it and they send you a journal and a video about RA, I liked that side of it, and now even though I am not on it anymore, the nurse still phones me to see how I am. Don't be frightenend to try it, I am sure you will be OK, especially if you have a good Dr. Best fo luck from Janie.
Thank you everyone for all your information. I am so glad this drug seems to have worked well at least for awhile. I am not happy that it can effect your liver and then never have a chance to bring it back to normal. But I will watch my levels closely. What are you taking now Kathy? Are you doing alright? Please let me know.
And Janie, I am so glad they have a nurse who you can ask questions to as well. I am still a bit scared but I am a strong person and I will get my head around this too! :) I am not doing well and I really need to be proactive. I am so lucky though, I have a wonderful husband , family and friends who are so supportive. Plus most importantly a great doctor. So I am in good hands. Hope all is well for all of you! If anyone has any more information I would so appreciate hearing from you! Susan Lee
Thanks for the inquiry...I'm fine. My enzymes are holding. I have to get regular ultrasounds for liver cancer and regular endoscoies to check the varices (sp?) to make sure they aren't ready to bleed. (Comes with cirrhosis - varices are like varicose veins on the bottom of the esophages caused by the change in the blood pressure of the liver by scarring.) When the liver failure was discovered was when I was bleeding from the varices, a crisis, and at the time I'd need to go on the transplant list in a year - but when I went off the arava it stopped progressing and now they say I won't need a transplant. I'm only on prednisone now though - can't take Dmards or Nsaids because of the liver.
I hope this doesn't scare you off - I'm really doing fine now! I hope all goes with you too - keep us informed!
93Kathy10,
Your post scared me. My enzymes are raised and I'm waiting to hear if they are back to normal. I'm a nervous wreck! I am wondering how much time had passed between when your blood test showed raised enzymes and when you had the bleeding problem? Were you on 20 mg Arava? I am only on 10 mg, and thought I had nothing to worry about and therefore put off my labs! Do you know how high yours were? Mine were only up slightly. Last, in hindsight did you have any other symptoms? Sorry to ask so many questions but I have been in a panic for 2 weeks.
Jodi...I am so sorry you have to worry about this but I am so glad you are getting your answers too.
And Kathy, how are you doing with just prednisone as your mainstay? You said you are doing fine now. What does that mean?Please write and let me know.
I have discussed this with my doctor and I may get to the point where there is nothing else but prednisone left for me too. I wonder if this happens to lots of us? And maybe this sounds silly but sometimes I wonder if it is worth taking all these drugs in the first place? Then I think it is because at least we gave it a shot at stopping the progression. What do you think?Susan Lee
I think my enzymes had started rising in the fall of 2002 and I didn't start bleeding until March of 2003 when I was in the hospital with colitis - I was really feeling sick - how much of that was my liver, I don't know. When they tested my enzymes they were "off the wall". Months later, I asked my liver doc if I would know if I started getting bad again and he said that he would know before I did from the blood tests. My tests are good now - a little high but not off the wall. I think I was on 20 mgs or arava.
It's important to know that I already had some liver damage from mercaptopurine (6MP) and MTX before I took arava.
I've had RA for 27 years so I have a lot of joint damage. I don't know if my RA is just not as active now but the flairs are farther apart and not as bad as they were. I sometimes have to up the prednisone for a while, which I don't like to do, but it does help. And I try to get right back down. The worst of my pain is in my back (DDD & spinal stenosis) and my torn shoulders.
Don't panic!
SusanLee
SusanLee, Thanks for your concern and thanks for asking your questions so that I could hear Kathy's story. We can all learn from her experience that we have to be our own health advocates. I know I got complacent when I was feeling good. I never called about blood test results. They say they will call if anything is wrong-- but I will call now! Also I wanted to tell you my mom has been on arava for years. She calls it her miracle drug and her enzymes have never been raised.
Kathy, Thank you for anwering my questions. I got my labs- they are near normal after stopping arava for 17 days. My RD says don't worry. (big sigh of relief) I hope that your remission lasts. Will they let you try one of the biologics? Remicade has made me feel almost normal. I hope it continues to work without the arava!
Thank you both so much for your help and support. At first I thought I might not take it but now after listening to you, the pharmacist and ofcourse my doctor I think I will go ahead. And yes, my doctor is right on with his blood tests every month so I will pray this works for me. I am sorry you had to stop it Kathy, and I will pray that you do feel better and better with each new day. And Fusie, I am sorry you had to add another med but I guess that is the name of the game with this disease. It seems from reading all the information on this site that many of these drugs only last a few years and ultimately need another in the mix. I am glad you got some relief for over 2 years and I pray that mixing it with Humira will bring relief again. Please keep in touch and let me know how things are going. I will do the same. If anyone else has any comments please feel free to add them. Thanks again, Susan Lee