Hello and Help

[Dennis J.]

Hello and thanks for taking me in!
My name is Dennis I am a 44 year old farther of 3, ages 6, 3 and 3, living on Long Island N.Y. I was diagnosed with Weg’s back in February 2011. I have been on Prednisone, Prilosec and Bactrim since then. I had a kidney biopsy in March and started a 6 months Cytoxan treatment. I just finished the Cytoxan and am feeling really good. Then I started the Azathioprine on October 12. I’m a big boy (over 350 lbs.) so I was given 400mg daily. On October 21 I was in the hospital with a high fever and joint pain. All my test came back negative for infections. So on November 5 I started the Azathioprine again at 200 mg daily. That afternoon I had a high fever and joint pain again. I’m now off of the Azathioprine and starting Methotrexate this coming up Monday starting at 10 mg once a week. Also 5 mg of folic acid the next day and continuing once a week. My question is; has anyone else had the same experience with Azathioprine and if they were switched to Methotrexate how did they do? Any help you could give will be greatly appreciated.
Thanks,
Dennis

[Dirty Don]

Hey Dennis, welcome to the most supportive forum on this stuff we've got! Anyway, have never been on Azath, but am on mtx...was taking it one massive dosage once a week, made me terribly lethargic and kind of sick to my stomach for about 3 days afterwards. Doc told me to split the dosage into twice on same day, half & half, 12 hours apart...it seems to have made a difference with the ingestion of the mtx and I feel better too! Best to you, ask all sorts of questions, you'll get all sorts of answers!! But, for me anyway, this site has been invaluable! Take care, be persistent!

[Dennis J.]

Thanks I've been reading through the posts and everyone seems very supportive and that they actually care for each other. I think this is going to help. Thanks again

[Al]

Welcome to our exclusive little club, Dennis! Here is my experience with azathioprine: I started with it about a year ago, but then had a relapse, so obviously it didn't do any good in the short term. Now, after another course of cytoxan, I'm on the stuff again, in the attempt to prevent another flare. Digestive problems are, they say, not uncommon with azathioprine. So far, I've done okay, though there have been a couple of times that I just couldn't face some specific food, even though I usually like the cuisine in question. This is totally out of character for me, so maybe it is the drug. The other med I take is, of course, prednisone. Fortunately, the level is down a ways from full-out. I can't take MTX because of severe kidney involvement.

That's my story; keep us informed about your progress!

Al

[Chris G]

Thanks I've been reading through the posts and everyone seems very supportive and that they actually care for each other. I think this is going to help. Thanks again

We don't really like each other at all. :w00t: LOL

That's the strangest thing about the aza! Did they say that the aza was CAUSING the fever & pain? Did it cease when you stopped taking it? Some sort of allergic reaction or something?

What dose of mtx will you be on?

[Red]

400 mg aza seems high i am 300lbs and dr. stated me on150mg aza 2 months ago no problems good luck with metho.

[Chris G]

400 mg aza seems high i am 300lbs and dr. stated me on150mg aza 2 months ago no problems

Yeah, that IS high. Come to think of it.......when they TRIED me on aza, I started out at 50 mg. I couldn't tolerate even that low a dose. So that little experiment was short lived.

[Al]

We don't really like each other at all. :w00t: LOL


Dennis--pay no attention to Chris. She's just paranoid. She thinks everybody is mean to her. Just because she deserves it....

[RudiK]

Hello Dennis: Welcome to this group. I have been on 150mg Azathioprine (3 x 50 mg daily) for the past two months and so far no problems, except my blood pressure has gone way up to about 175 over 80. My docs are trying to fight the high BP with 12.5 mg Hydrochlorothiazide, I'm due for a review next week. I'm also on 7.5 mg Prednisone. I weigh about 190 lbs.

[Chris G]

Dennis--pay no attention to Chris. She's just paranoid. She thinks everybody is mean to her. Just because she deserves it....

Nope not me .... you must have me confused with someone else :w00t:

[Red]

Dennis did your dr. due blood test to see if azathoprine will work for you ? they probibly did.

[Dryhill]

Hi Dennis welcome to our happy little band. I know nothing about Azathioprine but have been on Methotrexate (20mg once a week) for some months now and have not experianced any problems. I note you have the Folic Acid the next day, I was told to take mine three days after Mtx.

Hope you enjoy our company and the fun little disease we all have in common.

[Dryhill]

Hello Dennis: Welcome to this group. I have been on 150mg Azathioprine (3 x 50 mg daily) for the past two months and so far no problems, except my blood pressure has gone way up to about 175 over 80. My docs are trying to fight the high BP with 12.5 mg Hydrochlorothiazide, I'm due for a review next week. I'm also on 7.5 mg Prednisone. I weigh about 190 lbs.

Rudik, have you tried eating beetroot (or drinking beetroot juice) to help control your blood pressure? Here in the UK our lorry drivers (Heavy Goods Vehicle - HGV) have to take an annual medical and one of the ways round highish blood pressure is to drink beetroot juice the day before the medical. There is only one small problem with consuming lots of beetroot, urine gets a really preety colour!

[Psyborg]

Welcome to our Group Dennis.

[Al]

Nope not me .... you must have me confused with someone else :w00t:

[Darn, Chris. You don't...(whimper) think I'm m-m-meqn enough?]

[Sangye]

Hi Dennis, welcome to the group! I'm glad your initial treatment went well. Your reaction to aza is not unheard of. The blood test they do before giving you aza checks to see if you can safely take it. Unfortunately the test isn't 100% useful, and many people are surprised to have a terrible reaction like you once they start aza.

I hope mtx works well for you.

[Dennis J.]

Thanks to all of you!

[delorisdoe]

Dennis--pay no attention to Chris. She's just paranoid. She thinks everybody is mean to her. Just because she deserves it....

i am the one people are mean to. and by people i do mean chris and phil. they let me know they would prefer if i dont whine. thats mean.

[pberggren1]

Is someone whining again?.........lol

[delorisdoe]

Nope...not whining about it. That would imply that I want you to be nice to me.

[pberggren1]

Nope...not whining about it. That would imply that I want you to be nice to me.

I will always be nice to you, unless you don't want me to.........lol

[freakyschizogirl]

I'm nice to everyone so hugs all round :hug2::hug1::hug3:

[jola57]

Beware Putin is lurking.

Welcome Dennis

[Dennis J.]

I have a little time before the boss catches me not working so I’ll answer some of the questions asked.

Chris – Yes the Docs believe the aza causes the fever and pain. Also my wife thinks I’m mean on occasion but my mommy thinks I’m a nice boy.

Red – the docs conferred (renal group and rhumy) and they all felt the 400mg was right for my weight but they did reduce it down to 200mg after the second reaction they decided I can’t handle the aza so mtx here I come.

Dryhill – Thanks I’ll ask the doc about the spacing of the Folic Acid

Sangye – Thanks for letting me know that I’m not the only one that had this type of problem with aza

Thanks to all of you I should have joined this back in Feb. this is helping.

[LisaMarie]

I have problems with AZA and had to stop...fever chills joint pain and elevated liver enzymes...so far RTX has the most tolerable side effects...wish you luck on our roller coaster ride.....we are here for each other....:razz:

[RudiK]

Hello Dryhill: No, I have not tried beetroot or beetroot juice. I will look around El Paso and try it if I find it. Thanks for the tip. Rudi K.

[Kami]

Dryhill – Thanks I’ll ask the doc about the spacing of the Folic Acid



Hello! And welcome to the group!
Just wanted to add that I am on MTX, 20mg weekly, and I take Folate everyday.
Glad to hear you doing so well after being diagnosed, it takes awhle a find what medications and doses works, everyone is different. Funny thing about that Wegeners!!
Take care!

[Chris G]

Dennis -Regarding mtx and folic acid.... mtx leaches the folic acid from your body. When mtx is taken as a cancer treatment it's effectiveness is due to the folic acid being removed from the body. When weggies take mtx it's to supress our immune system. When we take folic acid to prevent a deficiency it has no effect on the effectiveness of mtx as a wg treatment. I took 1mg folic acid daily while on mtx (2mg the day immediately following my weekly dose). But i've also seen the 5mg once a week method.

[Dirty Don]

I'm on similar dosaging. mtx & folic & pred. I had to split the 'one' weekly dose of mtx cuz was getting severely lethargic and a bit nauseous...went to one weekly dose, same day 12 hours apart, half and half...it worked so far...no more symptoms to date. I take the folic daily though.

[mishb]

Hi Dennis and welcome.
I am on 20mg MTX and now down to 5mg Pred.
I also was told to have a 3 day gap between the MTX and folic, therefore I have the MTX on Monday and Folic on Friday (M for Monday, F for Friday is the way I remember to take them).
- no side effects at all with the MTX

Best of luck to you

[Al]

Dennis--I'm glad you have sorted out the AZA issue. It is curious, though, why they started you on so high a dose. I'm at 125 mg, at less than 80 kG (about 170 lb.) And most docs do a ramp-up from half the final dose, just to test the reactions.

Mom's are like that, but that's a good thing, right? My wife doesn't think I'm mean, though I do cringe when she comes after my beard with a sharp shear....

Al

[Kami]

Dennis -Regarding mtx and folic acid.... mtx leaches the folic acid from your body. When mtx is taken as a cancer treatment it's effectiveness is due to the folic acid being removed from the body. When weggies take mtx it's to supress our immune system. When we take folic acid to prevent a deficiency it has no effect on the effectiveness of mtx as a wg treatment. I took 1mg folic acid daily while on mtx (2mg the day immediately following my weekly dose). But i've also seen the 5mg once a week method.

Thanks for stating that! I have often wondered if MTX works by getting rid of the folic acid, aren't I just contradicting the treatment if I take folic acid? I am always going to ask my doctor but I never seem to remeber that question when I am there. Thanks!!

[Dennis J.]

I’ve been real busy the last few weeks, So here an update

I started the MTX this past Monday 11/14/2011 so far so good.
The doc's say AZA and MTX work about the same for maintenance. So I’m crossing my fingers. As for the folic acid the doc’s feel it’s ok to take it the day after or a few days later it’s up to how Ii feel with it.

Thanks again for the support

[maria garcia]

My daughter is taking the folic acid everyday. Is this wrong? Im also wondering about what Kami wrote. If we use MTX to take the folic acid away then why are we replacing it?

[Psyborg]

Daily folic acid is correct if on MTX. As I understand it the MTX depletes it too much.