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avonex + intrathecal Methotrexate

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gr8ful

Post subject: avonex + intrathecal Methotrexate

Posted: Fri Apr 07, 2006 9:18 am

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Joined: Thu Apr 06, 2006 3:00 pm
Posts: 5

Is anyone else getting intracath Methotrexate? I am going for my second infusion of this med next week. I have not noticed any beneficial effects yet. Is anyone else getting an immunosuppressant injected directly into their spine? I could not find any research supporting my neurologist’s STRONG recommendation to be on this med.

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wintergirl

Post subject:

Posted: Sun May 14, 2006 9:29 pm

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Joined: Mon Jun 27, 2005 3:00 pm
Posts: 8

Well I see it's been over a month since you posted and no replies. I guess what you're doing isn't all that common?

I am not doing intracath Methotrexate but my neuro and retinal specialist did put me on oral low dose Methotrexate. I took it for about 4 or 5 months and felt like it was killing me. Literally. I develped a cough that has never really gone away and towards the end I moved like a 100 year old person. My muscles and joints hurt so much I could barely get in and out of the car. This reaction puzzled my docs because I guess most patients do well with it. I'm not most patients though. I guess I'm one of those 2%'ers that have the strange reactions to most drugs I take.

So how are you doing with these treatments? Has it helped you?

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batpere

Post subject: most patients do well with it?

Posted: Sun May 28, 2006 6:40 am

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Joined: Thu Nov 11, 2004 4:00 pm
Posts: 97
Location: dallas

wintergirl wrote:

... my neuro and retinal specialist did put me on oral low dose Methotrexate. I took it for about 4 or 5 months and felt like it was killing me. Literally. I develped a cough that has never really gone away and towards the end I moved like a 100 year old person. My muscles and joints hurt so much I could barely get in and out of the car. This reaction puzzled my docs because I guess most patients do well with it. I'm not most patients though. I guess I'm one of the 2% that have the strange reactions to most drugs I take.

After being on CellCept for a year and not tolerating its side effects, my neuro switched me to 4.5 mg Methotrexate once a week. Can you give more details about what you mean when you say "most patients do well with it"? Are these drugs on top of the Avonex more effective at preventing further lesions and/or disability? My current neuro isn't very communicative.

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wintergirl

Post subject:

Posted: Sun May 28, 2006 8:26 am

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Joined: Mon Jun 27, 2005 3:00 pm
Posts: 8

Batpere,

I guess what I meant when I said that, was that I've been told most patients do well with it. Low dose Methotrexate is commonly prescribed for RA.....Rheumatoid Arthritis. I experienced the rare type side-effects that most people don't have. My neuro and eye doc put me on it specifically to try and back down the chronic uveitis and inflam in my eyes. My neuro does however have several of her other MS patients on it for their MS and she said they responded well to it. Now, she didn't tell me if they were RRMS patients or progressive......so I don't know her rationale for putting them on the drug.
If your neuro is being closed-mouth about it, you should do some reading on the subject of low-dose Metho. I read in several publications (Arthritis foundation etc) that taking folic acid along with the methotrexate reduces some of the toxic side-effects. My neuro knew nothing about that. Also.....there is an end-point for taking the drug. I can't remember what it is but it was like 18 months or something like that. Beyond that point.....heart damage was probable. Metho also carries the same liver toxcicity warnings that Avonex has so it's a double whammy on your liver. Be sure to get your blood tests every three months.
It really kind of irks me when a doc prescribes something and doesn't know much about the drug. Just about every description of the drug side-effects I could find listed mucsle/joint pain and a nagging cough under the "rare but possibly serious" list. When I called her about those symptoms she just disregarded them as "something else" and told me to carry on. As I felt myself getting sicker and sicker I chose to taper off it and quit. That's important to know also. You can't just stop it.....you must taper.
Anyway......I hope it works well for you. It helps a lot of people. Just be your own informed advocate......because so many docs don't seem to follow through once they write the script.

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batpere

Post subject:

Posted: Thu Oct 25, 2007 9:49 pm

Family Member

Joined: Thu Nov 11, 2004 4:00 pm
Posts: 97
Location: dallas

wintergirl wrote:

Batpere,
My neuro does however have several of her other MS patients on it for their MS and she said they responded well to it. If your neuro is being closed-mouth about it, you should do some reading on the subject of low-dose Metho. I read in several publications (Arthritis foundation etc) that taking folic acid along with the methotrexate reduces some of the toxic side-effects. My neuro knew nothing about that. Also.....there is an end-point for taking the drug. I can't remember what it is but it was like 18 months or something like that. Beyond that point.....heart damage was probable. Metho also carries the same liver toxicity warnings that Avonex has so it's a double whammy on your liver. Be sure to get your blood tests every three months.
It really kind of irks me when a doc prescribes something and doesn't know much about the drug. Just about every description of the drug side-effects I could find listed mucsle/joint pain and a nagging cough under the "rare but possibly serious" list. When I called her about those symptoms she just disregarded them as "something else" and told me to carry on. As I felt myself getting sicker and sicker I chose to taper off it and quit. That's important to know also. You can't just stop it.....you must taper.

Wintergirl, if you are still around... I stopped taking methotrexate 6 months ago in hopes that I might switch from Avonex to Tysabri. My doctor did NOT have me taper off. What problems would that cause? 2 months ago I stopped Avonex and last month had the first infusion. I had asked about the 18 month limit, but the neuro told me that was only for high-dose and not to worry about. I think I took it for about 18 months total. Hopefully my liver will survive. My primary care doc said my liver levels are slightly elevated and wants me rechecked.

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