Re: METHOTREXATE

[Guest guest]

Dagny,

It has been a long time since we chatted. How are you doing? Thanks

for the positive spin on metho. I hope I " sail through " and will let

you know after I've been on it awhile. How long have you been on

it? Dr. Buckner told me it was her choice of medications, so I'm not

surprised that you're taking it and having good success. She said

most of her patients did take it with no problems. I hope I'm as

fortunate. Thanks, Dagny.

Love,

> Dear and anyone else thinking about or just starting to go on

MTX. I know that many members have been having a lot of problems

going on it due to nausea, exhaustion, etc., and I too dreaded going

on it for that reason. I have found to my great joy that it hasn't

bothered me at all. I take 15 mg every Friday night with food, and

the worse thing I can say is that sometimes I'm a little bit tired

the next couple of days. But not always. Mostly I just sail

through. It's a far lot easier to take than same of the other

choices, and you may be just like me and can tolerate it very, very

well. Give it a try with a positive outlook. There are worse

choices! Love, Dagny

>

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[Guest guest]

> , not everyone suffers from nausea with the metho.

> Also it does not make you tired like the imuran, so

> hopefully you will get more energy. I take my seven

> tablets in the morning. I too started on 4 then

> increased slowly. Hopefully it will be as good for

> youas it is for me. Take care, love Liz

>

Liz,

Thanks for the encouragement. I certainly hope I have more energy.

I doubt that I could get by with any less. I have heard a lot about

fatigue with the metho, but I have been extremely fatigued with the

Imuran, so perhaps (hopefully) metho will work better for me. I'm

starting it today, so everyone keep your fingers crossed and say a

prayer please.

Love you,

[Guest guest]

I have been on met. for 6years or more. I take eight pills Sat. night and I feel awful Sunday. I am so out of it and feel so bad but do feel better on Monday. METHOTREXATE

Hey, what's the longest anyone's been on Methotrexate and what doses. This is the 3rd time I was put on it and I had the same side effects the first two times and was able to deal with it. This time it's ripping up my bowels and I just feel like shit,.

Anyone? Anyone? Buller? Anyone?

[Guest guest]

I was on it for 4 years at 7.5 mg for my pulmonary sarcoidosis. When I was honored (LOL) with the neurosarcoidosis this past November I went to 30 mg and let me tell you I know what you are talking about. I stayed at 30 for about 3 weeks and then was cut down to 20 and have been able to tolerate that a lot better.

Subject: METHOTREXATETo: Neurosarcoidosis Date: Sunday, August 8, 2010, 10:13 PM

Hey, what's the longest anyone's been on Methotrexate and what doses. This is the 3rd time I was put on it and I had the same side effects the first two times and was able to deal with it. This time it's ripping up my bowels and I just feel like shit,.

Anyone? Anyone? Buller? Anyone?

[Guest guest]

i have been on the metho injections now for about 9 months now and the sideffects i get , the night i give myself the injection and the next day i am sooooo tired. when i first started them i lost all my hair..yep i was bald but after about 4 months my hair started to grow back in. my hair is not growing fast but it stoped falling out.

That is the only sideffects i got from the injections. i took the pills before and they didn't help me but the injection has calmed things down for me.

good luck

jessica

Hey, what's the longest anyone's been on Methotrexate and what doses. This is the 3rd time I was put on it and I had the same side effects the first two times and was able to deal with it. This time it's ripping up my bowels and I just feel like shit,.

Anyone? Anyone? Buller? Anyone?

[Guest guest]

I , I'm so glad your hair did come back on its on.. I have always had problems with very thin hair but when I started with the meds from Sarc it was very embarrassing, so my doc's started me on some Biotin its a Bvitamin, along with some zinc, and right now I can't think of the other vitamin but will let the group know when I remember it.. My hair came back quickly and it was full and just as curly as if I had just had a perm.. I was so proud of it. Well of course when I did stop taking the vitamins the hair loss came back.. I am getting really tired of pill taking.. so I need to get to taking something again...This may not work for everyone, just wanted to let you guys know what worked for me in the past..

To: Neurosarcoidosis Sent: Mon, August 9, 2010 10:25:34 AMSubject: Re: METHOTREXATE

i have been on the metho injections now for about 9 months now and the sideffects i get , the night i give myself the injection and the next day i am sooooo tired. when i first started them i lost all my hair..yep i was bald but after about 4 months my hair started to grow back in. my hair is not growing fast but it stoped falling out.

That is the only sideffects i got from the injections. i took the pills before and they didn't help me but the injection has calmed things down for me.

good luck

jessica

In a message dated 8/9/2010 7:46:35 A.M. Eastern Daylight Time, mjcv29a (AT) aol (DOT) com writes:

Hey, what's the longest anyone's been on Methotrexate and what doses. This is the 3rd time I was put on it and I had the same side effects the first two times and was able to deal with it. This time it's ripping up my bowels and I just feel like shit,.

Anyone? Anyone? Buller? Anyone?

[Guest guest]



I have been on Metho. for almost 6 years. I take 7.5 mg weekly. It is working I guess I am not sure what it is for. lol silly me. I am sure they told me and I know I have it written down. I guess I should look.

Jackie

METHOTREXATETo: Neurosarcoidosis Date: Sunday, August 8, 2010, 10:13 PM

Hey, what's the longest anyone's been on Methotrexate and what doses. This is the 3rd time I was put on it and I had the same side effects the first two times and was able to deal with it. This time it's ripping up my bowels and I just feel like shit,.

Anyone? Anyone? Buller? Anyone?

[Guest guest]

Back in 2004 (I think) my local neuro started my on MTX after weaning me off Pred & Imuran. He ordered \25mg/week; shortly after that I saw Dr. Baughman in Cincy & he said that their research showed that anything over 15mg/wk did not increase benefits & increased side effects & liver damage. So we backed it down to 15. I was fortunate to have no side effects except some hair loss. Luckily I had really thick hair to begin with, so my hair still looked okay.

I know some members have used the injectionable MTX; don't know if that will decrease the GI symptoms. Might want to discuss that with your doc. Someone posted that they were taking 75 mg; I wonder if they meant 7.5. I couldn't find the post again.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: gstroop1497@...Date: Mon, 9 Aug 2010 06:43:14 -0700Subject: Re: METHOTREXATE

I was on it for 4 years at 7.5 mg for my pulmonary sarcoidosis. When I was honored (LOL) with the neurosarcoidosis this past November I went to 30 mg and let me tell you I know what you are talking about. I stayed at 30 for about 3 weeks and then was cut down to 20 and have been able to tolerate that a lot better.

Subject: METHOTREXATETo: Neurosarcoidosis Date: Sunday, August 8, 2010, 10:13 PM

Hey, what's the longest anyone's been on Methotrexate and what doses. This is the 3rd time I was put on it and I had the same side effects the first two times and was able to deal with it. This time it's ripping up my bowels and I just feel like shit,.

Anyone? Anyone? Buller? Anyone?

[Guest guest]

I just started my third time on Methotrexate. I've been on plaquinil and prednisone for over 3 1/2 years since diagnosed except for the 6 weeks I was in remission years ago. The prednisone side effects are much worse in my opinion. I've been between 5-80mg (mostly at 10 until I have a flare up) The first two times on MTX it was very predictable (always 15mg) took it on tuesday- wed (some cramping) thurs ( a bit tired and a bit cramping) Fri (not bad) sat and sun (very tired) Monday (fine) and over again. wasn't that bad. This time I've felt like shit (severe cramping and lethargy) but over all just feel like shit.

Welcome to the worst club to be a member of lol. But at least we go through it together.

METHOTREXATE

To: Neurosarcoidosis

Date: Sunday, August 8, 2010, 10:13 PM

Hey, what's the longest anyone's been on Methotrexate and what doses. This is the 3rd time I was put on it and I had the same side effects the first two times and was able to deal with it. This time it's ripping up my bowels and I just feel like shit,.

Anyone? Anyone? Buller? Anyone?

[Guest guest]

Just to back up what Rose has said: there is a possibility of liver

damage, although this doesn't necessarily affect everyone. This is the

reason for sticking to the blood test regime, especially at the start. I

am one of the lucky ones, for whom the blood tests have remained normal, so

the 30mg/week isn't a problem. Downside is that I don't take alcohol any

more, as booze can make matters worse. However, it's only after a really

tough day at work that I miss the cleansing beer! I have noticed the hair

thinning a bit faster than before, but that is minor in comparason with the

reduction in symptoms. Incidentally, the blood tests are also used to

confirm that the ACE and other levels are correct, which shows whether or

not the MTX is working at the level ordered. Adjustments can then be made.

Best regards,

>

> Back in 2004 (I think) my local neuro

> started my on MTX after weaning me off Pred & amp; Imuran. He ordered

> \25mg/week; shortly after that I saw Dr. Baughman in Cincy & amp; he

> said that their research showed that anything over 15mg/wk did not

> increase benefits & amp; increased side effects & amp; liver damage. So

> we backed it down to 15. I was fortunate to have no side effects

> except some hair loss. Luckily I had really thick hair to begin with,

> so my hair still looked okay.

>

> I know some members have used the injectionable MTX; don't know if

> that will decrease the GI symptoms. Might want to discuss that with

> your doc. Someone posted that they were taking 75 mg; I wonder if they

> meant 7.5. I couldn't find the post again.

>

>

> Ramblin' Rose

> Moderator

>

> A merry heart is good medicine. Proverbs 17:22

>

>

>

>

> To: Neurosarcoidosis

> From: gstroop1497@...

> Date: Mon, 9 Aug 2010 06:43:14 -0700

> Subject: Re: METHOTREXATE

>

>

>

> I was on it for 4 years at 7.5 mg for my pulmonary sarcoidosis. When

> I was honored (LOL) with the neurosarcoidosis this past November I

> went to 30 mg and let me tell you I know what you are talking about. I

> stayed at 30 for about 3 weeks and then was cut down to 20 and have

> been able to tolerate that a lot better.

>

>

>

> From: mjcv29a@...

> Subject: METHOTREXATE

> To: Neurosarcoidosis

> Date: Sunday, August 8, 2010, 10:13 PM

>

> Hey, what's the longest anyone's been on Methotrexate and what

> doses. This is the 3rd time I was put on it and I had the same side

> effects the first two times and was able to deal with it. This time

> it's ripping up my bowels and I just feel like shit,.

>

>

>

>

>

> Anyone? Anyone? Buller? Anyone?

>

>

>

>

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>

>

>

>

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