Are any of you taking both Methotrexate and Arava? I was on this combo for several years, since Arava first became available, until a year ago when Arava was not available for 6 months. Have no idea what that was about.
I know I was better, stronger, willing to be more active than I am now, without Arava. My pharmacy tells me they can't get it from their supplier. I can get it from pharmacies 20 miles away, but I can't drive any more, so hesitate to constantly depending on my daughter-in-law to take me.
What I need to know is, has anybody else been taking both, and do you feel it is worth it to try to get it? Thanks much. XX Loret
I have only been on metx and then arava - not together, really really do not like the arava at all. I don't feel right on it even though i don't have severe side effects.
If it has been prescribed to you, surely the pharmacy that has it can send it to your nearest pharmacy or deliver it to your house? That seems very strange, i also wonder why it wasn't available.
in reply to
It was out of production, so they said, last year. Now I learn it is available generically.
Another incidence of the pharmacheutical companies jerking us mortals around
Mads it's interesting that you say you don't feel right on Arava. It is a weird drug as I thought I was doing great on it (certainly helped my joints) however since I've been off it, realise how many issues it was causing for me (hair loss, rashes, really bad stomach, low lymphocytes...). I didn't even think at the time they were side effects and was really happy with the way it helped my joints, but jsut feel so much better since being off it!
I made some phone calls today, first to my regular Pharmacy, and asked if they had Leflunomide...Would you believe they do, They just don't carry Arava! Now why on earth couldn't some young chick there know it's the same thing?!!!
And now I'm not sure I want to take it along with Methotrexate and Simponi, the biologic.
Thing is I have obvious signs of disease progression, so whatever I am doing is not working enough. My rt wrist is feeling like it might as well drop off!
Can't read books, can't hold them, have trouble even turning the pages, can't chop and dice or slice veggies in the kitchen, and writing isn't all that great anymore.
My son and daughter-in-law gave me a Kindle eReader, which I really like and can get books from the library put on it for 14 days.
But I need to be concerned about where all this is going, where does it end, and what can I do to stop it. Phooy!
That is frustrating, and so irritating when people don't use their common sense & save you time & trouble. I think we all do have a love/hate relationship with our meds and there are many days where I long to put them all in the bin. However, you do need to try to reflect on what you want for future and the possibility of stopping or even slowing long term damage is a prize worth trying for. Perhaps the way to think of it is that if you can get your diseases under a bit better control then you might be able to slowly decrease the levels of meds you take overall? We all know that the meds react in different ways with each of us, ultimately you're the only one who can decide whether it's worth it for you. But not sure if you made freudian slip in your post as you said that you were better without Arava??? Px
Also, I don't have any life-threatening illnesses and I don't want to end up in a Nursing Home because my bones have all dteriorated and fallen apart!
Hi Loret,
I take Mtx and Arava (Leflunomide] and am much better on the combination than I was on the Mtx alone. I've had no side effects from the Arava:-} I can't have anti-tnf because of other health problems so I can't comment on that being in the mix.
Cece x
Cece, That is encouraging, thanks. Guess I will get the Rx filled today and give it a try.
I have been on MTX and Arava for about 5 years. Although I am also now on anti-TNF I still take both. My consultant is trying to get me to reduce the Arava and I am very reluctant as I have always felt that it helped me far more than MTX.
I have reduced the MTX as far as I can I think - 6 tablets weekly. My problem on reducing it anymore is extremely dry skin! Cracked hands and feet and the soles of my feet get very sore. It was one of my first problems with RA and went away when I got to a higher dose of MTX. I hoped that the inclusion of anti-TNF might have made the difference but it hasn't.
So now I am going to have to give reducing Arava a go. Not happy about it as I am facing many surgeries over the next few years and I would rather stay as I am until they are done with.
I'm glad you have solved your problem of getting Arava. If you ever have the chance of an anti-TNF don't worry about taking it with both MTX and Arava. I feel better now than I have done for years. My problem is that it took so long to get here I am having to deal with the consequences of RA running amok for years.
Jo, Good to hear from you! I had been taking Arava ever since it came out about 8 yrsa. ago, along with MTX, until last Feb. I have also been through a few anti-tnf's, Humira, Enbrel and now Simponi. Actually Remicade was the first, in 2002 Did very well with that, except it allowed me to develop Sepsis from a spider bite. Not good!
Got fitted with a different splint on my rt. hand today, and it's not letting me type very well. Also, the Hand Therapist said I must see the Ortho. Hand Surgeon. The wrist is deformed, the ulnar is twisted, and the thumb joint needs some kind of repair.
Your response, along with a couple others eases my mind, especially taking the antitnf also. I just wasn't so sure about all of the chemicals and don't feel they have accoplished enough, since my wrist, hands and feet and some of my back is still progressing with the disease.
I've already had 8 spine surgeries, with metal and bonegraft fusions, and both knees replaced, and all of those are still very good.
I do remember being very well with just the Arava and MTX, so for this month I am going to skip the Simponi and see how the Arava goes. In the meantime, I will have to go see the Hand Orthopod. I have been treated for all this stuff since 1985, though didn't have MTX until 8 yrs ago, along with Remicade. I believe had I had these things earlier , I might still be working! So I encourage people to go with the Rxs they can. Thanks so much for writing, I feel better. XXLoret
Hi Loret, Good to hear from you too! My spinal fusion is set for January 28th. I didn't get to see my ortho consultant till December and am so grateful that he has found a theatre for me so quickly. Probably because my spine is deteriorating quite a bit and this is the first of 2 ops.
I'm sorry to hear about your wrists. I know when my hands have flared how horrendous it is to be without the use of your hands.
I feel the same way as you about my early treatment. Unfortunately I had a Rheumy consultant who did not believe in `going in heavy' and stopping the disease in its tracks. He started me on MTX on the basic dose and it took 18 months for me to get to the max. Even then it did not work very well so he added Arava. That helped enormously for quite a few years but then I started having flares every 6-8 weeks. He kept dangling anti-TNF in front of me but never doing anything about it.
I had to give up work, I took to going into the clinic when I had flares (if I could get there) just to try to show him how bad things were, but nothing. I was about to tell him that there was no point in me coming to see him any more when he told me he was retiring! It was all I could do not to do a happy dance there and then, He actually said to me `I am sure (name of new consultant) will continue with the same medication'.
When I went to see my new consultant he had read my notes and the first thing he said to me was `Your medication is not working. I am referring you to anti-TNF`
But by then I had had over 2 years of flares on a regular basis and that is what I am having to deal with now. I think sometimes with joints, once the deterioration has set in it just progresses, even if your RA becomes well controlled. That certainly seems to be the case with me.
Very depressing though. I just get to feel OK about my RA and how I am feeling when all these problems kick in. I also need 2 knee replacements but they have to wait until my back gets sorted out.
My God, Jo, I think we have the same body design! I've had both knees replaced, 5 years ago. They are my best parts.
When is your spinal scheduled? It will likely be one of the best things you've done, once you are recovered.
My problem was with spinal stenosis, caused by an overgrowth of bony tissue inside the spinal canal and thus pressing on nerves to the arms and legs, which was caused by the Psoriatic Arthritis, which I had for 20 some years before RA developed. Guess, if you get one auto-immune disease, you can get others! Especially if it goes untreated.
Then the "crud" just kept advancing up the spine every 3-5 years. But it has been 6.5 yrs since my last back surgery and that was a doozy! But, in less than 3 weeks in rehab and I was on my own! Now there are only 4 vertebrae in the thoracic spine that are not fused with titanium rods and plates and screws. I do set off the airport alarms! I carry cards explaining the implants, but they don't care, they're going to feel all over anyways!
Until late this summer, I felt I was as good as I would likely be and was doing most everything I wanted, enjoyed going to my grandkids ball games and going places with lady friends, all of whom have some kind of ailment, one other with RA. But then, by September, I felt really tired and sleepy alot, felt lethargic, like I might have to remind me to breathe! And my right hand and wrist were screaming with every little movement. and even when I wasn't doing anything. It became too difficult to read a book, couldn't hold it. I used to go out on my canopied swing to read, under a tree and in front of a line ofnpine trees, where the neighborhood cardinal perched at the top and sang his little heart out every morning and evening.
Now I am dragging myself to get my usual duties taken care of, so I'm sure there has been a flare, despite the drugs. So, guess I must go ahead and take them all and see how much I can rot my liver and kidneys.
I sure will be glad to help you through your surgery, you know that old cliche "Been there, done that" ? Well, been there, done that, way too many times. But I will say, each time was a definite improvement in my abilities, I went back to work, in a hospital laboratory after 4 of them. Then my feet flared really bad and that was the end of my career, had to take disability, at age 55. I was a very depressed kid for atleast 2 years. My family and friends kept me going.
Must get to bed, had a fun but physically exerting day. My son and daughter-in-law took me to the varsity girls' basketball game this afternoon, so I got to walk into the school, and through the gymnasium and climb the bleachers. My son-the Dr. one-Doug, stands right behind me and makes sure I get up the steps OK. He is such a dear. The most popular dr in town!
Must go, your eyes are surely blurred by now. I will be back, stay in touch. and thanks for all your words and info! Love, LoretXX
I've been on both MTX & Arava for over 10 years, it was just about 4 months ago that I had my first side effect-mouth sores. I'm finally almost over the last one, I couldn't even eat on that side of my mouth for almost 2 weeks. It lasted about 2 months.
I can't tell which one caused it; I take the Arava on Tues & Fri, & MTX on Sundays. I'm going to ask my Dr about Folic Acid when I see him in 2 weeks. I learned about that on this wonderful site.
I had mouth ulcers when I started taking MTX but I read about others who took folic acid every day except MTX day. My consultant said that was OK and ever since then I get very few mouth ulcers (maybe a couple a year) and they only last a few days. So do start taking it more often, it really will make a difference.
Jo
Dear tw2, Most do take Folic Acid especially with Arava. Well I am impressed! Ten yrs! So, tell me, do you have limitations? Are you able to be as active as you want? Do you run the Queen's Marathon every Year? (kidding, just threw that in there)
This is a marvelous site, wonderful people!
Good to hear from you, hope all goes well for a long time! XX Loret
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Leflunomide/Arava
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