So because I have rotten side effects from the methotrexate it was agreed to try taking methylfolate (the natural version of folic acid) rather than the synthesised folic acid on prescription. This was in case I had the MTHFR gene that's stops synthetic folic acid being absorbed.
I managed to find some 5mg methylfolate on line but wonder what dose other people take as I understand it can be more potent. My rheumy doesn't know and has left me to find out
Try asking your pharmacist to find out for you. Not very impressed with a doctor who tells a patient to find out for your self!
Good job you haven't got a broken leg...maybe he'd tell you to plaster it yourself?
I asked my nurse about the possibility of taking the natural version as the folic acid tablets have their own side effects for me, she knew nothing about it! I was wary about buying them for myself, as I had no idea what dose to take, so I will be I interested if you do find out. Good luck.
Pharmacist also not aware. Apparently they were going to ask the specialist rheumatology pharmacist but they never got back to me.
I think you may need considerably less of the natural stuff as it's better absorbed so it is easy to overdose. From what I've read you need to build up to five mg. I've since purchased some lower dose methylfolate that also has vitamin b twelve
That's crazy! You shouldn't have to do that. Anyhow if the Pharmacist where you get your scripts filled can't help, my first thought, then maybe this link can. It's from a US site but states the FDA and European Food Standards Agency have approved L-methylfolate (5-MTHF) calcium supplements at doses you'll find towards the bottom of the page. It may help to get further advice if you possibly can though just in case dietvsdisease.org/l-methylf...
After difficulties with pregnancy, I was tested and I know that I have one of the MTHFR mutations.
I have been injecting methotrexate for about five months, and it has led to an amazing improvement in my pain level after three years of so much pain. As many others have said, it gave me my life back.
The first few weeks on methotrexate, I took no folate and no methylfolate. I didn't know that I should, and my rheumy had said nothing. I found this site and started taking 2mg of methyfolate, bought over the counter. A few weeks later, rheumy added in the 3mg of prescription folate and there was no decrease in the effectiveness of the methotrexate. Only when I reached that combination (3mg folic acid and 2mg methyfolate daily) did my mouth sores improve and my hair stop falling out. I take that dose seven days a week.
I also take sulfasalazine, cortef and plaquenil, but it was adding the methotrexate that really lessened my pain.
Dealing with the MTHFR gene mutation seems to be voodoo to many doctors and rheumatologists. I don't understand the trepidation as I believe that personalized medicine is the next great adventure in medicine.
Here is the perfect link for you!
mthfrdoctors.com/calculate-...
I have gone round and round with my rheumatologist with emails recently. I have 2 mutations of MTHFR A1298C. I was concerned about taking sulfasalazine since research shows that, like methotrexate, it depletes folate in the body. Her response to my concern about having the MTHFR gene mutation was that their clinic does not test for it and that they have treated thousands of patients with sulfasalazine with no issues. She said that if I wanted to stop taking it, that was my choice, but I risk a flare up. Alrighty then.
I, then, contacted my specialty pharmacist to ask his opinion about taking folate, since folic acid does me no good and may cause harm. He looked at my latest folate level, which was 25. I commented that maybe my blood level was so high because my body was not absorbing it. He understood my logic and was so kind to hear me out. He had no answer, but promised to look into it. He discussed the issue with my hematologist and then called me back just today. It was decided that I could most certainly take folate (no dose was recommended) and then he thanked me for him learning something new.
I am amazed at how little is known about this issue among doctors. Perhaps they don't want to know. In my opinion, they need to buck up and learn about it. Patients deserve to be treated on a personal level--mutations and all!
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