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Medical Forum / Diseases and Disorders / Arthritis / September 2006Any long term Arava users?
Hi...I have lurked here many years and have been taking Arava for 3 years, and until about 2 months ago was 99% pain free...just a few flares. Now I am having all kinds of problems in addition to carpel tunnel symptoms in both hands.....pain, numbness, shooting pains in fingers...kinda feels like they are on fire and cold at the same time.....have an appointment in Nov for a Neurologist. Anyway I am retired from the Air Force and have been lucky enough to get the Drug from the local Base, the script is a 31 day supply and I take one a day, 20MG. I was calling in a refill yesterday and noticed a generic drug label.....I didn't know there was a generic form of Arava out so now I am wondering if that is why my RA has gotten worse the last few months...not sure when they changed to the generic as I didn't pay attention to the warning label until yesterday. Oh I also take Plaqunil TIA for any replies Donna  SignatureSome people try to turn back their odometers. Not me, I want people to know "why" I look this way. I've traveled a long way and some of the roads weren't paved. Hi Donna,,,, How it was for me may not be how it is for you but Arava stopped working for me just how it did for you. This probem is something you work out with your RD but it does not hurt to hear how things went for someone else. I have RA(you do not say what you have) and had been on Methx for years and years which had stopped working for me slowly,,, over two year and I changed to Arava which stopped working for me very quickly after doing a great job on my RA for from one year to two years. For me, it on to Enbrel. People's systems change and we do not always know why. It takes an RD and a good one to come up with the right answers but the faster we come up with them the less damage takes place with our bodies. Please,,,, do not just endure,,,, work with your RD,,,,and make changes to fit what is taking place today. Also,,,, take part here and talk to people that know what your day is like and what worked best for them. Welcome to ASA. Harv > Hi...I have lurked here many years and have been taking Arava for 3 years, > and until about 2 months ago was 99% pain free...just a few flares. Now I [quoted text clipped - 16 lines] > > Donna Thanks harv for the welcome...yes I have RA, was 35 am 53 now and ran the gambit of Gold Injections, Methx + Plaquinl and currently Arava + Plaq. Most of my flares are in the ankles, hands/wrists, neck, shoulders and knees but not all at the same time and only for a 24 hour timeframe. This carpel thing is new and I feel the RA is the cause and not repeative motion. I have a very good RA DR but he is active duty and deployed to Iraq....he goes for 3 months and is back for 4 in cycles the last 2 years so as he is the only RA Dr I am on my own except for my Primary Care Dr. As to Enbrel no way...I hate needles and could never give myself a shot. The Metx+Plaq worked ok but had more flares but I will go back to that combo if need be. I can't take any of the drugs that weaken the kidneys as the reason I was taken off Gold [which was wonderful] is I started leaking protein. My PCM refered me to the nurologist so will just have to wait it out. I could get a referal to a Civilian RA Dr but by the time I get an appointment my Reg DR should be back. I pretty much was curious if any had taken the generic form of Arava and if there was a difference. Yes I will be more active here....thanks! Donna > Hi Donna,,,, How it was for me may not be how it is for you but > Arava stopped working for me just how it did for you. This probem [quoted text clipped - 39 lines] >> I've traveled a long way and some of the >> roads weren't paved. hi donna, i've been on the generic (leuflonimide) (spelling?) for arava since it became available. i'm also on remicade. a year or so ago, i asked if i could go off the arava. we tried it and that's when i realized it was helping. lol. that's one way to find out! i've done fine on the generic, but of course, your mileage may vary. diane Hummm ok maybe I am just in a funk<G> yes I know it works cause about 2 years ago I got pyst and stopped taking all my drugs....I also have a thyroid condition.....no function type and also take 3 different BP meds twice a day..well after 2 months I could barely walk so learned my lesson<G> > hi donna, > [quoted text clipped - 6 lines] > > diane I take Arava and Remicade and have had one 4 week dose of Rituxan. Been on the Arava for 5 or so years. It never held me well enough hence the addition of Remicade and when they both lost their effectiveness we boasted things with the Rituxan. That was a year ago in May and things are still holding. Interesting about the Arava generic. I have had one med - Flonese - which absolutely didn't work for me as a generic. Had to fight Medco about it but have the non generic in house again. I need to go check if the Arava I am taking is the generic one or the non generic. I have been fighting a tiredness that I am not found of. I would call your RD Duckie > Hi...I have lurked here many years and have been taking Arava for 3 years, > and until about 2 months ago was 99% pain free...just a few flares. Now I [quoted text clipped - 16 lines] > > Donna Hi Duckie.....well just got a refill and it didn't have the generic warning so it's the real stuff....I only get a month at a time so will keep track if there is a difference. My current pain is from carpal tunnel in both hands.....not sure what to do about the pain and numbness....it is running about a week on and a week off but is interfering with my knitting projects for Christmas. I too have bouts with feeling tired...no more all day shopping trips so have to plan for a day of rest after<G> My RA is deployed to Iraq and not sure when he will return. > I take Arava and Remicade and have had one 4 week dose of Rituxan. > Been on the Arava for 5 or so years. It never held me well enough [quoted text clipped - 28 lines] >> >> Donna For carpal tunnel try to get the inflammation down. Nothing repetitive such as knitting for very long if at all, ice, splints at night and during the day so you don't bend them into constraining positions. The carpal tunnel release operation does wonders for most too. Even when my RA is wild now the wrists don't get as numb although the actual joint does get pain. Use a timer when knitting - it will remind you to stop before pain. Good luck, Kelly > Hi Duckie.....well just got a refill and it didn't have the generic > warning so it's the real stuff....I only get a month at a time so will [quoted text clipped - 38 lines] >>> >>> Donna |
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