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Methotrexate - Remicade and TNF's - and TYSABRI (highest risk?)

Ive been on all the above except MTX and Tysabri. I Refuse to try TYSABRI.

Every drug has side effects. And yes, this is probably a question for my pharmacist or doctor based on data.. But most of our doctors dont have Crohn's. (Most!)

I think I will be starting MTX soon. Thanks!

I care about my liver.. haha.
I have been through so much and I want remission so bad. It's been tooooo long.

What do you consider "more risky" Or Dangerous" Or skeptical to go on.
 
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soupdragon69

ele mental leprechaun
Hmmm.

I had a discussion with my gastro team last Tuesday as am having a really bad flare at the mo and just cant seem to nail it.

MTX isnt an option for me at all - was on it originally for my arthritis and they hoped it would help my crohns but it impacted on my liver and I had to stop it last Autumn. Liver function still hasnt returned to normal ALT is still approx x3 what it should be...

I will have been on remicade 3yrs this coming May and cant believe where the time has gone. I originally was 8wks and have been 6wks for last 18mths at least. I was very "twitched" initially with starting it because of the mouse protein going into my body and still ponder it from time to time, however, what else can I do in the circumstances? Humira also wasnt around so much at the time of starting the Remi here so it was a no brainer for me. I think though the biggest impact was getting my head round the fact that I really had reached that stage of needing one of these drugs then and there. Cant put into words the huge mental and emotional leap that was for me.

Since before Xmas have been struggling. GI said when I last saw him he could reduce it to 4wks but was concerned regarding the increase in possible reaction and side effects. He also mentioned Humira again to me but in his view it just isnt as effective as Remi.

On Tuesday he sent me word via the registrar that if I wanted to change to Humira he would happily do it but if it didnt work as well as the Remi has for me and we went back to Remi that it too wouldnt have as good an impact! Does any of that make sense?? LOL

So the current choice I had last Tuesday was to have my Remi, start 40mg pred for 2wks and then slow taper according to how I felt by 5mg every week. As a result I will be on steroids now for at least a couple of months. This is all on top of elemental drinks grrr.

He also wants to retest me for Coeliac Disease so I have to eat a bit each day and ensure it has gluten in it until Friday week when my blood tests are. If it is positive then my prize is an upper scope hooray! ;-)

For me overall Remi has been a lifesaver. It has improved my quality of life all round, helped my asthma, my skin problems and my gut.

MTX gave me horrendous nausea, compounded the fatigue and exhaustion and made my muscle pain worse.

Humira I cant comment on apart from the above. Tysabri - have had no dealings with it at all.

Let us know what you decide.

Thinking of you ((hugs))
 
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I am on Humira and Metho currently. Have experienced no side effects from either and I am feeling great!

Was on Remicade for several years before this and had no side effects from that either.
 
Methotrexate was baaaaaad. Made me feel like a zombie; the day following the dose I slept. The next day I could usually do something, but tended not to arrange anything I needed to drive for. The rest of the week I just felt like the living dead. And it didn't do anything for my guts in the 2 or 3 months I was on it.

Sorry, probably not what you want to hear.
 
no it isnt. but thx anyways. I've been on fentanyl for months on and off and anxiety runs through me.. so i feel like a zombie anyway. No worries.
 
MTX zombie is a whole different game, you'll certainly know about it if dislikes you in that way - my quality of life whilst taking it was just not worth any good it did or could possibly do. Just be aware, like.

Did you get to see someone at a pain clinic? I still recommend gabapentin for back/joint/chronic pain - another quality of life thing just the other way about, and a very good anti-depressant too.
 

soupdragon69

ele mental leprechaun
Hey Sue,

There isnt really a "drug" to help the liver in those kind of situations. Basically what the liver needs is for the drug to stop. Its the only organ in the body that literally can regenerate itself.

Kasper,

What works for one doesnt always work for another and I guess its a case of try it an see in many instances. Unfortuately we all end up feeling like a guinea pig and its frustrating trying to figure out with each new attempt whether it helps, what is a side effect for you with that particular thing and what makes no difference or worse impact. Then to round it all off there is the valuable energy that you expend physically, emotionally and mentally trying to work out what is the best thing to do for you. Drives us all crackers at some point in each type of treatment.

Last year I kept saying the MTX was doing nothing on any front for me and the docs kept saying keep going. In the end I just refused any more because I was tired of feeling crap with it. On the other hand some folk as you have seen on this thread do really well with it.

We all totally understand where you are coming from on this one.

Keep us posted with how you are getting on

Thinking of you ((hugs))
 
I loved methotrexate. It was the only drug that made my strictures better and I had no side effects till my liver got pretty damaged. Just make sure you have regular blood tests while on it. I was a bit naughty and didn't have them often enough.
 
I loved methotrexate. It was the only drug that made my strictures better and I had no side effects till my liver got pretty damaged. Just make sure you have regular blood tests while on it. I was a bit naughty and didn't have them often enough.
Misty,

What type of liver damage? I use to take Methotrexate along with Remicade. I ran out of my perscription for Methotrexate around 5 years ago and never bothered to tell my doctor. I have been taking Remicade though for 10 years and never felt better. In fact I am still able to work as a Paramedic...Not bad considering 11 years ago I was using crutches and canes to get around.

Darn I can upload pictures to album but not my profile picture....grrrr technology
 
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