I Was Afraid This Would Happen | Arthritis Information

Well, my nearly three weeks of relief is over. I was afraid I would slide back after the RD dropped my MTX from .08 to .06. I was OK for several weeks and nearly back to normal for three. I told him at my last RD visit that I was doing great, although on that day I was having some symptoms again and I told him that too. I thought/hoped it was because I was overdoing it because I felt so well. I just needed some help with the face blisters. Since he didn't think more folic acid would help, he told me to drop down even further, to .05. I should have done it this past Sunday, but I didn't because I've been in pain the whole week. He said if I start having problems I can either call him and talk about it or just up the dose myself. I think I'm going to go up to .07 and hope that brings me back to the relief I had before. But I still have the side effects to deal with. This is what really ticks me off. I have to take the MTX but now I also have to take another medication to keep the blisters in check. Just what I need, more drugs. But what choice do I have? I have to take the MTX, no question. I'm seriously thinking about increasing the folic acid on my own, even though the RD says it won't do any good. Others here take higher doses...their doctors think it helps. So who's right, their RD or mine? I'm hoping my RD is all wet and the other RDs are right. Jesse882008-07-15 14:33:05

I am sorry to hear that you are in pain Jesse88. You should at least let your Rd know that you are going to up your dose of folic acid just so they have it on your records.

Have you tried Witch Hazel on your face? For any skin ailments I always use it.

I take the prescribed folic acid and whatever is in my multi... perhaps you need a multi to get all the vitamin benefits possible? many of those ... Like E are helpful to skin

I hope you feel better with the added MTX

babs102008-07-15 16:31:44Thanks Maimi and Babs. I do take a multi along with 10 mg. of Leucovorin but I know others here take even more folic acid than that. I wish I knew for sure if folic acid negates some of the good effects of the MTX. That would be a reason not to try a higher dose, but if it's just that my RD thinks it won't help, it certainly won't hurt to up the dose myself and see if he was wrong.

Witch hazel won't help with these blisters/cold sores. Only acyclovir helps and I'm now taking it twice a day to keep new blisters from popping up. I want to get off of it if I can and folic acid is a lot safer then acyclovir.

Aw, Jesse. I'm sorry it's going this way for you. Face blisters....every girls dream :(

I 'm glad that if you have to get them, at least their's a med that will keep them in check. Hope you feel better. Soon.

My RD is one of the believers that folic acid negates the effects of MTX if you take more than a small dose to prevent side effects. He allows me just 1 mg a day!Jesse - I am so sorry you are caught in a Catch-22 situation. Blistering from MTX is a new one for me to learn about. Or has your doctor figured out what is causing the blistering? Take care and big huggles ~~ CathyThanks, Linncn. I admit I'm pretty vain and blisters do nothing for my overall "look" LOL.

Wanttobe, your comment interests me. I've been doing internet research to try and get a difinitive answer, but it's clear there's no one consistent opinion on this subject. There seems to be a lot of disagreement about many things involved with this disease process...even when to take the folic acid.

JSNM, the blistering is from facial cold sores which is caused by a virus related to shingles. I didn't know it was the MTX causing it either until I did a specific "cold sores/MTX" search. Anything that lowers the body's resistance, like stress, overwork, menses, or even excessive sunlight could bring them on in the past. The MTX lowers the body's immune system/resistance, so the blisters just keep cropping up. I suppose I should feel grateful that I can keep them in check with the acyclovir. I remember as a child and teenager, there was nothing that helped much, so in a sense this is a God-send. I just hate adding another potentially dangerous drug to my already large medical arsenal.

I think first I'll increase my MTX to get this pain under control again, then, if my research shows more doctors agree with upping the folic acid than not, I'll try again to get my RD to go along with an increase. I don't know what else to do. I just hope that I'm not going to need even more MTX to get to the relief point I was at before he dropped my dosage.

Whew! I never thought I'd say this, but I'm actually looking foward to my next injection on Sunday.

Hey Jesse.. just thought of this..

call your pharmacist... they have the bead on what works w/ what and what is a detriment to the other... ask them!!

Babs, good idea! I'm with a new pharmacy now so hopefully they'll be better than the last one, although this new pharmacist couldn't answer one of my other MTX questions. Maybe I'll have better luck this time. Thanks!Jesse- let us know what the pharmacist says. I was surfing around getting mixed messages too when I was contemplating asking my RD for an increase in folic acid. I was bothered by hair loss. I take 15 mgs of oral MTX per week. Like I said he did not want to increase the folic acid at all and said the smallest dose that can be taken to prevent nusiance side effects from the MTX should be taken because folic acid definitely hinders the MTX from doing it's job. I didn't want to risk not feeling as good as I do so on Babs advice I tried biotin and it really has improved my situation. Dr. said that was OK to use.

Well, the pharmacist I spoke to didn't know and said to ask the RD. Back to square one.

I'm not having as much pain today and I'd like to think I'll be OK but I've been down this road before and I know I'm going to get hit again. I've got to increase the MTX but if history repeats itself it will be six weeks before I know if I'm getting enough to stop the pain and numbness. I guess it's just going to be trial and error, with the MTX increase and the folic acid increase. Wantto, your doctor's comment does give me pause so if and when I increase the folic acid I'll do it in the tiniest increments possible. I have to try something. I can't take acyclovir for the rest of my life. It's too hard on the kidneys and along with my other meds, it's just too scary.

Have you ever tried the topical campho-phenique? I have only had the sores on my lip but that stuff takes care of business almost overnight. If you apply it before a sore appears when you get that tingly I know I'm getting a cold sore feeling it stops it before it starts.Wantto, thanks! I'll try it. I've never found anything that works as well as the pills, but I'm willing to try anything that might help me avoid more medication.

BTW, I went back to the pharmacy today and the pharmacist supervisor was on duty. I asked him about the folic acid negating some of the good effects of the MTX and he said it does not. I still don't know what to believe, some say it does, others not. I guess I just have to try it for myself.

[QUOTE=Jesse88]Wantto, thanks! I'll try it. I've never found anything that works as well as the pills, but I'm willing to try anything that might help me avoid more medication.
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