Arava question

[Guest guest]

Marilyn-

Thank you so much. That is exactly how I feel. That makes me feel alot better. I will think positive when I start taking it again on Monday. Were you taking MTX with Arava?

So you went from Arava to Remicade? You haven't done self injections? If the Arave doesn't work our next step is self injections, Humira.

But I am praying it works cuz I hate the thought of having to do the self injections.

Thanks again.

Are you feeling okay? Are you having problems sleeping too? Just wondering cuz it is so late. Well I shouldn't assume that you live in the US, but do you? Happy Thanksgiving!

TaKe Care

Love and Support,

Keri in CAMarilyn Hogg <mhogg69@...> wrote:

Hi Keri, sorry to hear that you are not feeling well and I do hope it subsides soon. I took Arava a few years ago and I remember during my loading dose feeling almost like I had flu type symptoms, after a week or so it passed and didn't have any problems that I recall but did notice that after a month or so I began to feel sooo much better and could walk around without the cane and even other people were noticing how well I was doing. It was a great feeling to feel that much more mobile. But then unfortunately I caught a very bad case of pneumonia that caused me to go into septic shock. The doctors felt that the Arava was lowering my immune system too much and gave me some type of drug to get the Arava out of my system in order to give my immune system a much better fighting chance. After I recovered from the pneumonia, maybe 7 months or so later, the doctor restarted the Arava but not the initial loading dose and it just wasn't

the same and didn't have the same effect. So I later came off of it and began Remicade infusions.

I do hope that these side effects will pass and that you will be able to stay on this drug and I hope it will help you as much if not more then it did when I first started taking it. Just double check with your doctor about stopping the medication while you have a chest cold, etc.

Take care Keri,

Marilyn

mhogg69@...

----Original Message Follows---- From: Kerilyn Read

I have a question regarding the side effects of the loading dosage of Arava. My Rhemy gave me the loading dosage which was 10x the dosage that I would take on a daily basis. So I finished the loading dosage and it seemed almost immediately I started feeling nausas. And bad headaches. Has anyone else had any side effects from the loading dosage or even from the regular dosage. If so what side effects did you have and what did your doc do about it? Did you continue to take the medication or did you stop? How long did the side effects last? Love and Support, Keri In CA

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[Guest guest]

Hi Keri,

no I took Methotrexate about 10 years or so ago and it didn't do anything for me except make me sick so it was stopped and I haven't been on it since. After the Arava I switched to Remicade infusions which seemed to work but after a while it wasn't lasting in between infusions which were every eight weeks so we brought it down to having the infusion every six weeks and then that didn't seem to last after a while. The Rheumy then decided to switch me to Enbrel (self injections) and I dreaded the thought of doing injections twice a week but you know what, it turned out not so bad at all. Unfortunately, it's been a year on the Enbrel and I am finding that it isn't really doing much for me so we are off in search of yet another drug to try. I figure it might be either Kineret, Humira or Rutiximab. I have to phone the Rheumy in a few weeks to see what he has decided upon as he was looking into some study's that I could participate to try some of the drugs that aren't available here in Canada yet. So time will tell.

I saw the specialist for my neck the other day and he said that my upper veterbrae has collapsed and this is why I'm having so many problems with my neck right now. Although he did say that it has stablized it's self so I'm not in any danger at the moment of it affecting the spinal column but he is monitoring my situation every six months to keep ahead of any problems that might occur in the future. This arthritis just doesn't know when to give up, but hey I just don't think he knows what he is dealing with, heeeheeee!

Yes, I too am having problems sleeping. It's 5:40 am and I still haven't gone to bed yet! What time is it there?

Take care Keri,

Marilyn

PS: Happy Thanksgiving!

----Original Message Follows---- From: Kerilyn Read

Reply-Stillsdisease Stillsdisease Subject: Re: Arava Question Date: Thu, 27 Nov 2003 02:22:22 -0800 (PST)

Marilyn-

Thank you so much. That is exactly how I feel. That makes me feel alot better. I will think positive when I start taking it again on Monday. Were you taking MTX with Arava? So you went from Arava to Remicade? You haven't done self injections? If the Arave doesn't work our next step is self injections, Humira. But I am praying it works cuz I hate the thought of having to do the self injections. Thanks again. Are you feeling okay? Are you having problems sleeping too? Just wondering cuz it is so late. Well I shouldn't assume that you live in the US, but do you? Happy Thanksgiving! TaKe Care Love and Support, Keri in CA

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[Guest guest]

Hi Keri,

I have never taken Arava so I can't help you there. I have forgotten....what medications have you already taken that do not work? And, besides the Arava, what are you taking now? I'd like to be able to suggest something that might have worked for me but I don't know what you are taking at the moment or have already tried and it didn't help.

I sure hope you can get out a bit for Thanksgiving. It's so yukky feeling nauseous. Try to have a little enjoyment today.

xxoo,

Mi. Carmen

[Guest guest]

Gosh Darn it, Keri,

I can't think of a single thing to make you more comfortable. It sure seems that you are trying your hardest with the medications you now take. I took Celebrex and even doubled the dose and it did nothing to help me. The injections that you might try.....would they be Enbrel or Kineret or Humira? I had the hardest time for over a year to self inject. It would take me ages in the morning and a few tries each time to get the needle in my tummy. My mind and hand would not stick it in me. But........I can say with this new Enbrel needle, it goes it the first time. I actually felt kind of proud of my self the other day. Plus the smaller needle does not hurt at all and now we are allowed to inject only once a week instead of twice. I haven't tried that way yet. You might want to have your husband or your mother or a friend do the injecting if you don't feel comfortable doing it yourself.

I sure draw a blank on what more to suggest to you. Didn't someone send an article on the drug CTLA41G ? It's supposed to be a major help but I don't see anything more about it. CAROLINE????? This is your expertise department.....any more news???

Being house bound is a real drag. Those four walls close in and squeeze you so hard that it does get depressing. Same thing day after day. I'm glad you were able to get out for a while and know that you were extremely happy to frolic in the California smog..... We'll be home in Palm Springs soon but we don't get much smog. You, Pattymelt and I shall have to meet for lunch somewhere one day when we all feel up to it !!

Take care and I really would look into some kind of an injection. Enbrel plus MTX has really helped me.

Carmen

[Guest guest]

Gosh Darn it, Keri,

I can't think of a single thing to make you more comfortable. It sure seems that you are trying your hardest with the medications you now take. I took Celebrex and even doubled the dose and it did nothing to help me. The injections that you might try.....would they be Enbrel or Kineret or Humira? I had the hardest time for over a year to self inject. It would take me ages in the morning and a few tries each time to get the needle in my tummy. My mind and hand would not stick it in me. But........I can say with this new Enbrel needle, it goes it the first time. I actually felt kind of proud of my self the other day. Plus the smaller needle does not hurt at all and now we are allowed to inject only once a week instead of twice. I haven't tried that way yet. You might want to have your husband or your mother or a friend do the injecting if you don't feel comfortable doing it yourself.

I sure draw a blank on what more to suggest to you. Didn't someone send an article on the drug CTLA41G ? It's supposed to be a major help but I don't see anything more about it. CAROLINE????? This is your expertise department.....any more news???

Being house bound is a real drag. Those four walls close in and squeeze you so hard that it does get depressing. Same thing day after day. I'm glad you were able to get out for a while and know that you were extremely happy to frolic in the California smog..... We'll be home in Palm Springs soon but we don't get much smog. You, Pattymelt and I shall have to meet for lunch somewhere one day when we all feel up to it !!

Take care and I really would look into some kind of an injection. Enbrel plus MTX has really helped me.

Carmen

[Guest guest]

Welcome Patty!! I am another Patty that Tricia was telling you about but I use my nickname of Melt here with the group.

I cannot help with the medication question either but also get the tingling nerve pain. It comes and sometimes stays for a few days or just hours. For me, my doctor has always told me it was neuralgia. With heart palpitations I was also advised to drink lots more water. I had them mostly while on Prednisone in the early years.

I have been diagnosed since 1977 and am now 45. My Stills was very bad in the early years but maintainable for quite some time now.

Again, welcome and we look forward to knowing you and supporting you any time. Till soon, Melt

Re: Re: Arava Question

> Hello all-I was diagnosed with AOSD about 12 years ago at the age of 34. I have been on methotrexate injections for about 7 years. I recently went off prednisone and am wondering if there are "withdrawal symptoms" that anyone else has experienced. I am often nauseous and feel like I have electricity running through my body at times. Sometimes I get a prickly sensation in my skin and have heart palpitations.

[Guest guest]

Hi all

From what Ive read Arava is stored in the body (for up to 2 years after you stop

taking it.)Presumably stored in the liver mainly (?)

So if you take 10 mg/day, that would be about 3-4 grams /year. So after 5 years

does your liver have 15-20 grams of Arava in it?? Yikes! Does that mean if you

stop taking it, it takes a couple of years to stop working?

Also, I think Walt just takes Arava, (thanks Walt for your encouraging replies

to my questions, it does help to have faith in what you're taking, and it helps

if others have been helped by the same thing), are there others who have then

dropped MTX (I'm taking both at the moment).

thanks again

regards

max

[Guest guest]

I took Arava a number of years ago. I had an unusual reaction,in that I was

rapidly loosing my hair and headed toward being bald. It was about 8 months

after I quit using Arava that I finally quit losing hair. It does stay in

your body for quite a long time. Arava really helped me but I couldn't

manage the side effects.