Hi,
I put this together for Kate88, so have copied and pasted it here. Hopefully your questions will be answered. If I can give you any more specific info, then please do a PM to me.
Do NOT skip folic acid. If you are using a "rescue", then do that as well.....not in place of unless your doctor has advised you to do it that way.
Sally
"I seem to find myself as the "old hand" at methotrexate. Come March, I will have been on mtx for 17 years. My medical history is a long one, and the mtx was the only option we had as I had become toxic to steroids.
I started on 15 mgs weekly, using tablets. Within a year, this was not doing the work we needed, and we upped it to 25 mgs and was doing this with injections. I stayed there for a year or so, and then it was upped to 50 mgs. I was there for about 3 1/2 years. Then, 11 1/2 years ago, the lupus was escalating and we had to rethink this issue again.
We brought on board an oncologist to manage the mtx, I had a portacath put in, and we took the mtx to 70 mgs IV weekly. There I have stayed and gotten better and better as time has gone by. We know this is unheard of for most lupus patients, but we didn't really have much option. I am toxic to steroids, and can't go above my maintenance dose of 1 mg and 3 mgs alternating days. Even going up to 10 mgs has my body running fevers and weird disconnected brain actions.
When my oncologist retired, I took over doing my chemo administration. It is no worse than doing any injection, just a bit more attention needed and added things like saline flush and then heparin lock on the port.
My oncologist added in a B-12 1cc injection with the mtx and I found that this took my reactions down by over 1/2. It was amazing to me, that such a simple thing could make such a difference. But it has.
I do 3 leucovorin 5 mg post mtx staged in 3 doses in about 18 to 24 hours. It makes a big difference. Mtx and folic acid are only 1 chemical bond different from each other. The leucovorin is what I call a "pumped up" folic acid and is used to reduce the action/neutralize the mtx.
While chemotherapy drugs are used to treat autoimmune diseases, and cancer, it is important to remember the following:
cancer cells are rapidly dividing cells
inflammatory cells are rapidly dividing cells
which explains why chemotherapy drugs are used to kill off rapidly dividing cells.
BUT, with autoimmune diseases it is not desired to kill healthy cells while killing off the rapidly dividing cells. Thus, a "rescue" drug/leucovorin is used to slow down the effect on healthy cell kill off, yet get the desired effect on inflammatory cells.
The "rescue" is not generally used with cancer as it is desired to continue its destruction on rapidly dividing cells and the damage to healthy cells is considered a necessary evil of this therapy.
I apologize for this getting long, but it is important to explain why these things are used.
The muscle pain and soreness which sometimes accompanies mtx is caused by a pooling of all the dead inflammatory cells in the joints and muscles. Usually within 2 days these have flushed out and you feel back to normal. My cousin's assessment of this was that we need a "garbage truck brigade" to clean things up. Would be nice, but not happening any time soon.
If you get the burning mouth, which can happen, I have found that anything with mint oil will relieve this. Nausea, keep compazine on hand. It doesn't happen every time, but when it does, I need it. The same with intestine reactions. I keep lomotil on hand.....with the B-12 it is not often, but when it happens, I need it.
Mtx is an old, tried and proven drug. It is the least dangerous of the chemo drugs used. Blood tests need to be done with it to make sure your body is adjusting and handling it ok.
At the low doses used normally with sle, it is a safe and well tolerated drug. If the dose goes higher, you may also need to be on a daily folic acid supplement. This is a protection for you and to make sure you are able to tolerate the drug.
I hope that you are able to look at mtx addition with a positive lean. It is always scary to add in a drug with a history of usage for a dread disease. I am thankful that I have a doctor who was willing to look outside the box to find a solution that we could not find otherwise.
I found that I had less reaction with injections vs tablets and less still with IV vs inj's.
Good luck, whichever way you end up going."
Sally
