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Hi ,

Kathleen here, formerly from NY and now in CA. Just want to say first, that

even though I don't always write, I read and catch up on the posts on a regulary

basis. I want to respond to your methotrexate questions. Remember, we are all

individuals and we all respond differently to the medicines we are prescribed.

I had an exceptional experience with the methotrexate and after 7 months of

treatment and weaning off of the drug, I have been flare free and meds free

(absolutely no maintenance doses of anything) for 2-1/2 years now. I don't like

to toot my horn, which is another reason I don't post much. I just want everyone

to know there is hope for all of us.

If you have only been prescribed 4 pills of 5 milligram methotrexate, you should

not experience any hair loss. You will probably experience some upset stomach

on set until your body adjusts to it however, you can get something from you

doctor for that too. I don't remember taking anything for naseau after the

first month or so. After the first 12 weeks of being on the drug and not

experiencing any flares, the med was reduced by 5 milligrams and repeatedly

reduced every 8 weeks with good blood test results and no flares, until I was

completley weaned off. If you are only on 3 mgs of prednisone .. this is a good

sign. You might see your liver levels elevated while you are on metho and

taking all the ibuprophen (2400 mgs is a lot). I would check with your

pharmacist ... I take the prescription version (Anaprox) which is prescription

motrin .... not a good mix with the Metho and I received a call from my

pharmacist warning me not to mix. So, please mention this to your Dr. All of

the rhuemy's are different when it comes to folic acid. Dr. T would not allow

me to take any while I was being treated with the metho it some how had adverse

effects to the treatment ... so I took it afterwards.

As far as fatique goes, with this low dose, you should only be minimally

affected. The first day or metho day, I took the dose in the afternoon, stayed

home, and got plenty of rest. I usually took the treatment on Fridays so I had

all weekend to rest. By Monday, I was back at the gym ... yet another way, I

feel, beat this beast into sleeping. Drink a LOT of water, everyone should no

matter what drugs they are on. My mother thought I was a lunatic for exercising

while on the treatments, but I prooved her wrong .. Now she agrees it was

probably very beneficial, even if you have to force yourself to do it. Once

your body adjusts to the drug, so will the fatique levels.

I wish you great success with your new treatments and pray you join the rest of

us who have sleeping RP soon. And I wish this for the WHOLE group as well.

Take care,

Just me, Kathleen (CA)

> Message: 23

> Date: Wed, 6 Nov 2002 16:01:02 EST

> From: OneSuperMema@...

> Subject: Methotrexate

>

> Hello everyone,

> Okay, I should have paid more attention when you talked about methotrexate.

> Yesterday my doctor took me off Imuran and put me on metho. I do NOT want to

> be on it, because I DO remember reading the horrible side effects some of you

> have had. She does not think Imuran is working for me, she wants me to

> continue lowering the Pred (I'm now on 3 mg. YIPPEE!), and she has started me

> on a low dose of 4 pills weekly of the metho with the possibility of

> increasing. She also gave me Folic Acid to take every day. I am also taking

> 2400 mgs. of Ibuprofen daily. She will be doing lab work monthly. PLEASE

> give me any hints you have found that work best for you to lessen the nausea,

> migraines, etc. Is it better to take it in the morning or evening? What

> should I expect? She thinks the Fibro is contributing to my pain as much as

> the RP. Does metho work on Fibro? I am EXTREMELY tired already, and I'm

> afraid the metho will take the last ounce of energy I have left.

>

> She is also sending me for a full body bone scan. I've been having a lot of

> chest pain, and she thinks it could be caused by chest wall inflammation(?).

> Does anyone have any information about THAT?

>

> Thanks for any information or suggestions you can give me. I pray for

> everyone that is in pain and rejoice with all of you that are feeling

> well....even if it's only for a day.

>

> God bless,

>

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