[cjmclaughlin]

I saw my rheumy yesterday and am still in pain and taking painkillers at least 3 times a day. He pushed my MTX up to 6 tablets but said this is the highest he will go as usually after 6 tablets it becomes difficult to tolerate. Have any of you experienced this? I'm not sure if this is just me since I've had a hard time tolerating it or not. What would come next? Any thoughts? Should I expect to be mostly pain-free on MTX or am I hoping for something that just doesn't exist?

 

[sam101360]

Hi:

I am sorry, it's been a very long time since I took MTX. I was taking 5 pills a week and was very very sick from it. I lost 20 lbs and was grey from the drug. They switched me through a bunch of medications that I could not tolerate or did not work, and I am now on cellcept. I tolderate this medication very well.

I hope you do OK on the higher dose of MTX

Stephanie

 

[LolaLola]

I am on 8 tablets, 20 mgms a week with no bad effects. My only side effects were at the initial low dose and soon faded. 20-25mgms seems to be the top dose I have heard of, and for me is VERY good indeed.
Hope this helps.
x lola

 

[Pink Pearl]

From my own experience, I say that doctor is full of hot air. I have been on mtx for 17 years....yup, years. I started at 15 mgs, went to 25, then up to 50 and have been at 70 mgs for 11 1/2 years. SO....... I disagree with him that you can't get benefit from higher doses.

One thing I have learned from my oncologist is that this:
oral tablets - you get about 50% benefit of the mtx from this method as the liver detoxifies about 1/2 by going thru the gut.
injection - you get about 80 to 90% benefit from this before the liver detox's the blood.
IV - you get nearly 100% benefit this method as it is direct flow in the blood to the needed areas.

I had less side effects on injections than I did on tablets and felt better than with the pills
initially I had reaction with the iv, but it is now worked its way thru.

For me, prednisone is not an option medication and we had to find other ways to control the lupus. Mtx was my solution and has done quite well.

I'm sorry that your doctor is locked into an out of date concept of mtx and its use.
Sally

 

[cjmclaughlin]

I guess I misspoke as he is willing to increase the dosage of the MTX but not with tablets. If I need a higher dosage then the 6 tablets he wants me on injections since I'm having a hard time tolerating the 5 pills currently. Sorry for the confusion.

I'm really hoping the 6 pills work without too many side effects as I really don't want to go on injections.

 

[Bullwinkle]

I have been on MTX injections , self admin'ed for a year at least. I find them the perfect way to go. More bang for your buck, & easy to do.

 

[Pink Pearl]

I would not go back to tablets even if I could! Injections are so much easier on the body and they are NOT hard to learn to give oneself. I got skilled where I could do the injection with either hand and either arm. I prefer arms to legs...just easier for me. You will get more benefit from injections than you will tablets. The method the body does to detox the drug from your system leaves the injected meds more able to be used more fully.

You may be put on folic acid. The scientific thing to know is that folic acid and mtx are only one chemical bond separate and will neutralize the mtx and its effect on the body. It is used as a "rescue" for this purpose. Your body will need this drug constantly so if your doctor asks you to stop it when you take your injection, ask why. Usually your body is not able to produce enough folic acid those days to meet its daily requirement. Then, your body plays catch up for several days. Ask your pharmacist if you are not sure what to do about this.

Good luck, and don't fear doing injections. Once you get the idea, it is not hard.
Sally

 

[cjmclaughlin]

Are any of you pain free on the MTX? I'm wondering if I am expecting too much of the MTX. I would love to have no joint pain in my hips, knees and ankles or pain that is handled by OTC meds...is this possible or are my expectations to high?

 

[Bullwinkle]

Pain Free ???? I don't understand .... LOL. Nope I'm never pain free ... 'cept in my dreams.
Keep smiling tho'.

 

[Pink Pearl]

No, pain free is not a description I claim, but it is less pain than without the mtx.
I am remembering what it was for sle before mtx as I have had to skip my last 2 weeks. The antibiotic I have been on is not compatible with mtx, so have had to skip them. I get to do my first in 3 weeks tomorrow, and am VERY much aware of how much my body has come to rely on the chemo.

Sorry, things are better on mtx, but not ever expected to be "gone."
Sally

 

[keebler]

I am currently on 20mg (tablet). That is the highest tablet wise my rhumey will go.

My joints really haven't improved since going on metho.
He said there is injections so who knows what is next for me.

I guess we are both alike with metho not doing much for either one of us.

Hang in there,
Lyn

 

[laineyrock]

I've been on MTX since January 2009. I started out at 10mg and am now taking 17.5mg/week (pill form). I do have to say that although I still get pain and swelling on my joints, it doesn't last as long anymore. Now the pain lasts about a day or two (the longest) and I don't get the pain as often as I did before. In a nutshell, MTX has helped me. I'm also taking 2mg folic acid a day to counteract the effects of MTX. I am also taking Plaquenil.

One thing I didn't like about MTX and have posted about it is that I lost quite a bit of hair at first. My hair is starting to fill back in slowly but surely little by little with the help of Biotin and nioxin shampoo and conditioner.

Hope this helps!