Taking control, I want off Methotrexate

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cbrossman
Regular Member


Date Joined Apr 2005
Total Posts : 191
   Posted 9/14/2005 11:00 AM (GMT -7)   
Since I think I am as healthy (RA-wise) as I will get, I want to see if I can begin to reduce some drug dependancies.
I called my doc., but of course spoke to the PA. Party line response, "don't do anything until you see the doc." which is 1 month away. I won't even get into how I dislike this uninformative response, so I will take control myself.

Here is what I have planned.
Right now I am on 25mg of MTX injectable once a week, it is 1 CC. Also taking 50mg of Enbrel once a week.
I think I will reduce the MTX by 1/4 for the next 4 weeks, in 1 month no MTX shot.
I will not change my Enbrel dose or frequency, one thing at a time.

That is about the time I see my doc. again. She may not be happy about this, but it is my body.

Does anyone else have experience with reducing their drugs (prednisone does not count) as they get back to normalcy? I don't expect to stop taking Enbrel anytime soon, but I no experience on just Enbrel alone, since I started MTX 4/5 months before starting Enbrel. My hope is that Enbrel will be sufficient. I also think that independent of price, MTX is probably a lot harder on my body in general (opinions?).

Any advice/concerns/stories would be appreciated ... Craig

ach
New Member


Date Joined Sep 2005
Total Posts : 8
   Posted 9/14/2005 11:08 AM (GMT -7)   
What is mtx? Is that code for methotrexate? Why do you want to stop it?

cbrossman
Regular Member


Date Joined Apr 2005
Total Posts : 191
   Posted 9/14/2005 1:00 PM (GMT -7)   
Yes, MTX = methotrexate.
I want to stop because it is not very good for you. It can cause liver problems, lower blood counts, and others. I like my beer and I have high cholesterol, I am not currently taking my Lipitor. And because of my level of physical activities here in Durango (well above sea level), I can use all the red blood cells I can get. Riding a bike at 10,000 ft. above sea level for many miles on a rocky trail requires good aerobic training, red blood cells are an important part of that.

If I can be just as healthy on Enbrel alone, than it sure seems like a good idea to me.

... Craig

curley
Veteran Member


Date Joined Mar 2005
Total Posts : 4305
   Posted 9/14/2005 7:05 PM (GMT -7)   
Hi,

Ok you ask so I'am fixen to tell you some thing's that you may want to consider.

My Dad whent off of his Methotrexate cold turkey and it caused him some harrable side effects.His GI said that he needed to be wing off of it becasue of the side effects that can acure.

Well by the time his GI and Rheumy told him this it was just a littler to late because he had gotten off of the methotrexate without telling them what he was doing.

So please don't try winging your self with lut first talking to your Doctor and see what he has to say.Let us know how things are goig.
Thanks
Curley......
a.k.a.Mela...........


CaMama
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Date Joined Mar 2005
Total Posts : 1884
   Posted 9/14/2005 9:02 PM (GMT -7)   

What kind of side effects occur by stopping cold turkey? I had to stop suddenly, but that was because the drug put me in the hospital. I haven't taken it since.

Craig, I don't know about Enbrel, but with Remicade, your body responds to the medication better when you have a secondary medication. Methotrexate was shown to have the best combination effect with Remicade. From what I am understanding, you body can get used to Remicade, but methotrexate helps from that happening. My brother in law started Remicade solo like I did, after a year or so, he added (reluctantly) methotrexate back in to his medication (pills, not injections.) He said he feels much better with the addition. The MTX helps your body to not reject Remicade and have some of the side effects you might incur while taking it.

Possibly, this is NOT the same case w/Enbrel, but I do not know. Plus, that info above was 2nd hand info from other patients telling me what their doctor told them and a little from my own doctor.

Maybe the doc and you can find a lower dosage that will work okay with you for now...also, can men take folic acid? When I was on MTX, the doctor had me taking a LOT of folic acid and B vitamins to help with some of the side effects of the medication. I'm certainly not pushing the drug - I refuse to take it after what I've been through...but, as my posts will show, I have a horrible immune system and all these drugs are making it worse! I know it's a big help to many others who do take it.

Good luck. Let us know what you decide.

**


 


cbrossman
Regular Member


Date Joined Apr 2005
Total Posts : 191
   Posted 9/15/2005 8:33 AM (GMT -7)   
Thanks CaMama and curley. Since I see my Dr. in a month and I feel like I am riding better than I have in a long time, I guess I'll wait.
I still hate the shots!
Craig

ach
New Member


Date Joined Sep 2005
Total Posts : 8
   Posted 9/15/2005 10:13 AM (GMT -7)   
How old are you? do you have reg blood wrk done? Are you taking folic acid? My doc ( not that he is GOD) said because i was not older, and have never had kid or liver probs and reg bld wrk,that should be fine. He gave me folic for the side effects, and like CaMama he said most of the meds work better with metho. CaMama, what did go through that you would never take it again? You can ride a bike Craig? It sounds like u are doing okay.Are you in a remission? If u hv been in remission for a good while, why should you have to keep taking any of them ,especially metho? I would tell my doc though, if i were to stop.Can't you drink non- alcohol beer while on meds? I am not a drinker ( 4 personel reasons not moral) but my clan is and my husband drinks couple after wrk.

Flopsie
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Date Joined Jun 2005
Total Posts : 1361
   Posted 9/15/2005 10:24 AM (GMT -7)   
Just a word of caution. Non alcoholic beer still has alcohol in it. My hubby has Hep C(loves his beer) so he started drinking Near beer, his doctor hit the roof when he found out, said it still has some alcohol in it. In my state you must be 21 to buy it and it is not sold on Sunday..just like regular beer.
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CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 9/16/2005 9:54 AM (GMT -7)   
Ach, I did not feel well on MTX, I was having breathing troubles, chest pain, and always felt "off." As time went on, I became very fatigued all the time. Less than a year after starting MTX, I came down with an acute case of Ebstien Barr Virus/Mononucliosis with an inflammed liver and slpeen. My liver enzymes were so high, they were through the roof. I was hospitalized for a week. It took months for the levels to go back to normal, my spleen enlarged so bad it started to bleed/ bruise and I wasn't allowed to hold my children for over 5 months. They think the MTX helped make my situation worse. My white blood count was so low, they said it was as bad as a luekemia patient - and that was just from my monthy blood work taken a week before I actually knew I was sick!
 
Needless to say, with all that, even though it may have been a fluke - I'd prefer to stay away from it. Now that I have liver problems again, I don't think I'd risk it either way.
 
Thanks for the tip on Near Beer, Flopsie - not that I drink, but good to know!
**
 


cbrossman
Regular Member


Date Joined Apr 2005
Total Posts : 191
   Posted 9/22/2005 7:15 PM (GMT -7)   
CaMama,
All reasons I would like to get off it, but I feel pretty darn good most of the time and I'm riding hard 5 days a week. I get my liver numbers checked every 6 weeks and there is no indication of problems yet. In Novemeber I'll have been on it for a year, 25mg injections once a week.

I have breathing troubles on occasion as well; the last time was this past weekend at 11,000 in Telluride while riding up a steep rocky trail :)

I see the Dr. in 3 weeks, we will talk about it at that time.

Thanks for all the input ladies ... Craig

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 9/22/2005 9:14 PM (GMT -7)   
were you par chance riding up bridal veil falls? :-)
 


cbrossman
Regular Member


Date Joined Apr 2005
Total Posts : 191
   Posted 9/23/2005 8:57 AM (GMT -7)   
Nope,
When I was riding near town on Sunday, I was on Deep Creek and Mill Creek trails. On Saturday, I was up on the ski hill, Papa Smurf and Alta Lakes trails.
Craig

Ducky
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Date Joined Mar 2005
Total Posts : 3199
   Posted 9/23/2005 9:27 AM (GMT -7)   
Craig - I went to that link that you posted with the pics, wow, are those some pretty places... maybe some day, I will get better and can ride there :) I know the bruises on my legs aren't very happy with me, but I'd have been fine had that D@(& spider not been on me! :)
Diagnosed January 2005 - Psoriatic Arthritis/Dactylitis/Spondylitis 
   -Currently taking 50mg shot weekly of Enbrel
 
Diagnosed May 1998 - Graves Disease
   -Complete Thyroidectomy September 1998 - While 11 weeks pregnant
 
Other Complications - GERD/Scoliosis/Hiatal Hernia


cbrossman
Regular Member


Date Joined Apr 2005
Total Posts : 191
   Posted 9/25/2005 1:34 PM (GMT -7)   
Thanks for the info Judy, I have decided that my reasoning for wanting off MTX is probably not good enough right now. The main reason being I don't want to lower my aerobic ability by killing of red blood cells. I guess I'll just compensate by riding harder and smarter.

we all have our demons ... Craig
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