Well, I had my second visit to the Rheumatologist today, she looked pretty bored with all my questions, I felt just another arthritic statistic but I persevered with my questions whether she liked it or not!! However, even though I feel improvement on Plaquinel alone she is anxious for me to start MTHX. Is that normal?? It's 2.5 mg. four tablets plus folic acid the second day. For all you experienced MTHX takers, is there any better time to take them, i.e. at night, weekends etc. Hopefully I won't have any side affects at all (wishful thinking) but if so perhaps there is a better time in the day to take them etc. I think I will also look around for a nicer Rheumatologist even though I don't dispute her diagnosis. Perhaps a lot of specialists are not given training in bedside manners too much or maybe I am expecting too much. I told her that lots of people were afraid of MTHX and she said that wasn't the case cos she had been prescribing it for years etc I nearly referred her to our web side just to fill her in otherwise. Note she is not taking it herself!!! Thanks again for all your help. Gillian
I'd find another Rheumy if I were you. In this kind of circumstance you need full support, trust and someone that actually wants to care for their patients rather than go through the motions as they work.
On the topic of MTX, the dose that you will be taking isn't to high so hopefully side effects will be minimal. I'm currently taking 15mg and was scared prior to beginning the medication but if you have to do it you have to do it. I take the Folic acid once a week also and have yet to experience any side effects in 11 weeks of taking it. I take mine every Sunday morning and haven't had a problem however I know of people that opt to take it of an evening so that any side effects are minimal and not experienced as they sleep through it. I'd go for it if I were you. You may be relectant now and in the future you may find it isn't the medication for you but its worth a shot if its going to help you to have some pain-free days. I have no pain right now and I'm feeling great! You may find the same! Good luck and lets us know what you decide to do. x
Hi Gillian
Sorry to hear that your rheumatologist was so bored. Maybe she should have been a childrens dentist or a veterinarian or something exciting like that. When I was put on MTX, which was many moons ago, I was taking Plaquenil and Imuran and Prednisone. I could tell the difference when I started taking the MTX and was eventually weened off of the Plaq. I've found that it doesn't make a difference what time of day I take the MTX, But be sure to take it on the same day every week. If I didn't have this reminder written down in three separate places (computer, fridge calendar, and phone alarm) I would forget to take it. I am presently taking 8 tabs a week. By the way, they do make "nice" rheumatologists. I have one and as a bonus, he is very knowledgeable also. Find a rheumy that you can be happy with.
Hi Gillian:
I've been taking mtx for 4 years. I'm suprised that your rheumy only has you take the folic once a week. I take 1mg everyday. Most don't have side effects. I did to begin with. I went as high as 30mg a week. I inject mine. I couldn't take the side effects of the pills.
Had some nausea and vomiting to begin with and some hair loss. But that faded after about a month. I was usually sick the next day. The pills messed with my monthly cycle. But things just took some adjusting to get it right. Now you'll have to pry my mtx from my cold, dead hands. It really makes a difference. Just know that if you are one of the unlucky FEW that have side effects, they can be managed easily, and they get better over time. The difference it can make for you is worth it. Keep us posted.
Hi Gillian,
I've been taking MTX for over 10 years and have not had any side effects. I've been taking 25mgs a week for a few years now. The only problem I've had with it is that last month my white blood cell count was very low and I had to go off the MTX for about a month until the white blood cell count went up.
As long as you get your bloodwork done regularly, your doctor will be able to keep on eye on any problems that may come up.
It took me a while to finally give in and take the MXT (I was afraid to take it) but I'm glad I enventually gave in. It's worked very well for me.
Kelly
Gillian;
I've taken MTX for about 3 years now. I'm up to 22.5mg with Humira weekly and it's made a huge difference in my treatment.
I'm one of the lucky ones that can take it orally without any problems.
As far as your RD is concerned I agree with the others; find a new one!! The relationship between you and your doctor is very important. You need to find someone that you like and gives you the kind of treatment you deserve. The relationship with your RD is likely to be a very long one (Often out living some marriages) make sure you find someone you can grow with. Someone that will make an effort to get to know you and exactly how this disease effects you. It's very, very important.
Best of luck to you.
Lovie
Hi Gillian. I've been on mtx for a year (7.5 mg) and have had no problems at all. I take it every Saturday morning. It has helped that's for sure. I think you should be taking the folic acid daily, however. I'd check with your doctor about that. Good luck!
Susan
Thanks girls for all your helpful advice re timing of MTHX etc. Just to add, yesterday I had a call from the receptionist at another Rheumatologist that I had contacted just after my first appointment with the original one (when at that stage I wasn't sure about her, but after my 2nd appointment I know I don't want to stay with her). Anyway, it's always very difficult in Canada to see a specialist, but I have managed to get an appointment via the nice receptionist next Thursday. Usually you have to wait months and months so hopefully it will go OK and she will take me on. This one has been recommended by a friend. I agree that it's vitally important to have a good relationship with this particular doctor because she is going to be with you for a very long time. A second opinion is a plus too. We shall see, will keep you posted. Thanks again. Gillian Good deal. I hope you like the new doc better.JENNA,
I wanted to add my note to you that folic acid once a week has to be in error. That is a med you take EVERY DAY even though you only take MTX once a week. I noted that Susan also mentioned this, but I am repeating it just in case you didn't see it. Check your prescription bottle--OK? Side effects from the MTX are handled better if you are taking folic acid faithfully.
Gillian;
I'm glad to hear you're getting in with the new doctor. That's a stroke of luck!! Hope all goes well.
Lovie
I've noted all your responses to the folic acid aspect of MTHX and will certainly make sure it's taken more than once a week when I see the doctor. Maybe I was mistaken but I am sure she said once a week. Don't worry, I will make sure before I start taking the MTHX, which now probably won't be for another week or so. Thanks again. GillianMy doctor had originally told me it was optional. Considering I take far more pills than I'd like I told him I didn't think my side effects were bad enough to take something to counter act it. He said that was fine. I'm going to ask him about in in two weeks when I go. If it will benifit me maybe I should be taking it...if it's just to counter act the side effects I'd rather not bother.
Keep in mind I'm the one who's doctor told me it was ok to have the occational glass of wine and other here say their doctors forbid it. (Although I kind of appreciate his additude on that one
Gillian,
Glad you'll be checking w/your doc on the folic acid. Lovie, I agree that we already take far too many meds on a daily/weekly basis. I have read a few articles extolling the merits of folic acid. I am past this stage, but folic acid is highly recommended for women of child-bearing age to prevent birth defects (esp neural tube--spina bifida, etc.) I think folic acid is touted for several other reasons, all of which are now eluding my brain at this early hour.
have a great day!
I've gone through menopause...so I won't be having anymore children either.
What other reasons? Anyone?
Hi,
I haven't had a problem with unusual hair loss either. I take 22.5mg a week as well and have been on MTX for 3 years.
Any other reasons? Anyone?
(Thanks Deb)
Folic acid deficiency can cause mouth ulcers, greying weak hair, poor growth, diarrhea, even ulcers. Its needed to produce red blood cells and for digestion of food. MTX destroys Vit b-9 ( folic acid ), but so does inflammation. So even if your not on MTX, it does no harm to take a daily dose.I would agree with the others ,i am on 12.5mg MTX suppose to be upped next visit,as he is weaning me off prednisone 10 mg.currently.Folic acid is to be taken daily I'm on 1mg daily.I was told to help with hair loss,nausea,I haven't had any sickness from the MTX-I am one of the few that MTX doesn't make me tired,it did the first time and not since(hopefully it stays that way)SherryHi! I have been following this thread closely. As I posted previously I only take 5mg of Folic acid a week all on a Friday. I take the average amount of MTX (15mg weekly) and am yet to experience any side effects. I don't even feel tired the day after which seems common in alot of people. I have an appointment with my specialist on Thursday but if I am not experiencing any problems taking the medication would I need to up the folic acid? The MTX is 100% doing its job and I have absolutly no pain whatsoever. Should I question the folic acid dosage or because I'm doing so well, should I just leave it and if I start to have any side effects bring it up then?Jenna--
How about checking with the doc about when you take it. I'm thinking the dosage is ok--maybe a little low, since many take 7 mg/week--but definitely think you should ask about the benefits of taking 1mg or so daily, rather than all at once. I'd be wondering how long folic acid stays in your system. If it only lasts a day or so, then you're flushing all the benefits of the leftovers from the one big dose, and your body is without it for the rest of the week. See what I mean?
I understand what you mean. I'll ask him what he reckons when I see him next week. I agree that it is a low dose but if I'm not having an problems then I don't think I will have to change it. Thanks for the suggestion though I'll ask his advice and let you know.