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Brenda
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I have 2 questions.
1. I have read lots of people taking folic acid and are told to do it different ways. Only take it on the day you take the pill. Take it every day except the day you take the pill, etc. I've been told to take it every day starting a week before I start the shots. Does anyone know what the thinking is on the different ways of taking it?

2. I'm to start Metho injections next week (it has been put off and put off for various reasons) at .2 in the syringe (is that .2cc? not sure at the dosage "measure") I'm reading people starting with around 7mg and up to 25 mg. Does this mean I'm taking .2mg? Will that be enough to do anything?

And Finally... for those taking the metho by injection... are the side effects about the same time table as taking it by pill form? I see lots of people are sick the day of and the day after taking the pill. I'm not sure how long it takes to absorb it with the injection.

Thanks for looking and thanks in advance for your help :)
Brenda
 

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Folic acid...

Dear Brenda,

I have only started metho by tablets 3 wks ago, so can't help much with the injection or dosage questions. I'm sure someone will be on in no time to fill you in on that.

My doctor has had me on daily folic acid for a while and has said nothing about changing how I take this now that I am on metho. So I take it daily as usual. I have not had any mouth sores (though I have a nose sore this week-my third). No biggie though.

Hope it goes well with you. I had some side effects initially, but things are getting better already in the 3rd week. I hope it helps you!
Monica
 

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Hiya Brenda!

I am just as confused about the folic acid supplements as you. I had one doctor tell me to take it every day, had another tell me to take it every day except for the day I took the metho, and a third say it didn't matter, just as long as I was consitent.

That being said, I take it every day. That is how I started out with it, and I think my metho dose has been adjusted accordingly. I do think it makes a difference, because the shots really wipe me out if I haven't taken the folic acid.

I take prescription Folgard, which is 2.2 B9, .25 B6, and .500 B12 which I started taking for elevated homocysteine levels. I just stuck with it once I began the metho.

The .2 (cc's) on the syringe equals 20mg in a tablet form. I prefer the injections over the oral form. It bypasses the digestive system all together, so I don't have to deal with the nausea.
 

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Brenda
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Thank you so much tbunny! That all helps a lot! So .2cc isn't that small of a starting dose then? That surprises me. Thanks again for your reply. This site is so great. I can't imagine how frightening this disease would be if there weren't people willing to share their experiences.
 

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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
 

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:thanx: thank you, thank you, thank you Sally!

That is the most thorough explanation I have ever seen. No one (dr. included) has ever been able to tell me why we take the folic acid with the mtx.

Your experience is a valuable asset to this message board! Your amazing, thanks for taking the time. :bigsmile:

Tracy
 

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Hi Sally,

I agree with Tracy, your explanation is wonderful and helps a lot of us to understand things better.

Thanks for taking the time to post this and enlighten all of us.:wink2:
 

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Hi Karol & Tracy,
You are most welcome. Glad that the experience I have gained has paid off.

I guess that course I took in organic chemistry paid off. It definitely helped me to make sense of a lot of things that went on with me and mtx. It was a ****** of a course, but it made sense of a lot of things for me. Sort of being able to connect the dots.
Sally
 

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Thanks for the explanation Sally - very interesting!
(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.)
In fact, people mostly take folic acid from the get go. Prescribing habits and dosage apparently varies but one very common recommendation is not to take the folic acid the same day as the methotrexate. Doses Vary from 1mg a day, about 5 a week, or 5 or 10 mgs once weekly.

Of course it is not without its potential side effects, so check it out as with any drug, to see what blood tests need to be done before starting it or any other generally recommended tests. In the case of methotrexate this might be a chest X ray since it can sometimes affect the lungs- I have known several people on the forum who have had to come off it for that reason; what tests need doing after you start taking it and to make sure you know what side effects should be reported to your doctor; and check whether your case has any possible contra indications such as liver disease or trying to get pregnant since it is on the list that should not be taken.

It's also photosensitising like many of the medicines we take.

:)
Clare
 

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Brenda
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Discussion Starter #11
Thank you Sally, Clare and everyone who has answered. That info was incredibly helpful! He did do a chest xray to have something to compare it to and suggested that is a concern he has with me as I already have lung damage. But he assured me that we could tell if it was happening because I would feel really sick like I had pneumonia again.
 
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