I took my first 5 pills last Sunday (2.5 ea.). I didn't feel well for 3 days (nausea and fatigue), but I feel fine now.
Is MTX something that we have to take the rest of our lives? Or is this something we take for awhile, then get off of it, but maybe back on it at a later date?
I'm only 10 mg of prednisone for 14 days, then I am to get off it.
Sorry, but this is all so new to me.
Hi Flamingo,
I'm not actually sure about the MTX, but I think it is a long term thing. I am taking 8 pills/week and have been for about a year now. It took me a while to work up, and I was very tired and nauseaous too after taking it...for about 2 months. Now I take it on Friday evening and am usually really tired and somewhat 'flu-ey' on Saturday, but better by work on Monday. It has been helping me though and I hope it will for you too.
Take care!
MXT treatment is not the same for everyone. Each of us are in different stages of the disease, damage level is different, complications are not comparable. You might be on 5 pills this months and 6 pills next month and 7 pills or more in the future. You may do so well that your RD will reduce the MXT but it won't happen next month.
If there is anything for certain with a chronic illness it's uncertainity. A CI teaches you patience. You may grit your teeth and stress out because you have no control but that only makes the disease process more painful for you. Having patience and being calm doesn't mean you've given up, it just means that by being patient you're in more control.
I hope that you've been instructed on how to taper Prednisone. DON'T JUST STOP. If you don't taper properly you can cause additional health problems and you don't need that.
I've been searching with my RD for the perfect cocktail for the last 2 years. I'm getting closer but not there yet. Sometimes I get frustrated with the process but it doesn't last long. I try and do something fun and it soon goes away. I don't have the time or energy for negative thoughts.
There are no pat answers. We all have a different story and outcome. Keep educating yourself about the disease and the medications that are prescribed and don't be afraid to confront your doctors and ask questions.
Good luck with finding your magic mix of meds. Keep us posted on your progress.
I was diagnosed last June and pulled a 150 RA factor. When I finally asked after a few months of MTX when I would be taken off of it, my rheumy was truly shocked and said I would be on it for the rest of my life (I am 51). He truly shocked me. But I am in the high end "i am screwed" 97 percentile factor, so perhaps and hopefully your situation is different. But, if I understand this all properly, RA is a chronic, debilitating, degenerative disease that silently erodes our joints without us realizing it until it finally begins to show up visually. DMARDS like MTX are suppose to slow this down, but there is no cure. Best of luck and never give up. Cathyits a long term thing i believe see I have been on arava and recently had a flare and doc put me back on metho with the arava I am not doing so hot these days and when i took it the first time since i was diagnosed i remebered why i didnt like it at all.
Hope things get better for you take care
Thanks for the info. Cathy, I am similar to you. Age 57, just diagnosed, and RA factor was 156. I asked my RD if I would be on MTX forever and he said yes, but I was hoping he wasn't serious (guess I'm just crazy). It's tough taking this MTX since I had chemo 10 years ago for BC. It mentally brings back bad memories. However, I just need to learn to deal with all of this and take it a day at a time. I feel so much better pain-wise since I am on MTX and Prednisone. However, I had 3 days of nausea after 1st MTX. I am to stop the Pred at the end of this week. I'm wondering how I will fell after that. Hope I stay well because we will be leaving on vacation after I'm off the Pred. Flamingo - I was on Prednisone for five months, and now know what a heroin addict must go through during withdrawal, but I now understand my rheumy put me through some sort of fast, stupid weanoff. I will never take it again. I think the idea was to let the Prednisone work fast term until the MTX kicks in after 8-12 weeks. Well, the only thing I know that it did was when I fell down the stairs and broke my toes from being on way too many medications at the same time, I never felt a pain LOL. And honestly, I think it took about 6-7 months for the MTX to really start working at these low doses. Sorry about the BC and the fear, I don't have that to contend with, but I do wish you luck. But I just started Plaquenil (anti-malarial) for the lupus and its really doing a number on my digestive tract. I just finished studying malarial and never realized it was a parasite in your red blood cells via the liver, intereresting. The worse side effects of MTX and Plaquenil (diaherrea, clay-colored stools, headache, etc.) were what my pre-diagnosis symptoms were anyway, so my rheumy and I shared our only true laugh together in the beginning and said, who cares? Take care ~~ CathyIt's intended for long term use. If you react in a positive manner to it then you'll be lucky. I've been on it for close to 5 years now. I take 25mg.
As your disease begins to get under control you can take less....but you will always have to be on some sort of DMARD treatment to continue to slow the progression.
I hope that I'll be able to take MTX for many, many more years to come. It's been the best medication for me so far.
Definately get off that predisone asap. Don't get caught in that trap where you tapper off and say "It hurts! I'll just take a little more" don't go back and forth upping and lowering dosage according to daily pain levels. Get off it this week and only take it in the future during extreme flares and ONLY for very short courses. I mean within a matter of weeks. It might be difficult at first......but you'll thank yourself later. If you are prescribed it again in the future make sure your RD is adjusting your DMARDS or Biologic treatment to compensate once you are finished with your predisone.
MTX long term is far better than Predisone long term.
Curious: How does the MTX dose for RA compare to the cemo you took for cancer?
Thanks for the helpful comments. I will be getting off pred by the end of the week. I wasn't told to taper off, but I'll take everyone's advice and probably skip a couple of days. I've only been on it 2 weeks, so hopefully that will be good enough.
I don't know the amount of MTX I took for breast cancer. I plan to discuss that with my oncologist at my next visit. I know that I took some very agressive chemo and my hair fell out in 14 days. After 3 of those treatments, I then took 4 more treatments (actually a total of 8 injections) and those were the ones that contained MTX and a mixture of two other chemos. None of it was fun, but it did save my life.
I was extremely sick last night throwing up and diarhea - - I tend to think it was something I ate and not the MTX, but then again I was very sick this weekend and thought it was something I ate. I rarely, ever get sick at my stomach, so maybe it is the MTX. Who knows! I feel better today.
Here is a question though. When I quit the pred, all I will be taking is MTX. Is that normal? Seems like everyone on this forum takes MTX but something else too. Pain-wise, swelling-wise, ROM, I feel good now - - hope it stays that way with just the MTX.
I took MTX alone for several years and got up to about 17mg. Everytime I increased it I would do great for a while. Then I'd have to increase it to get the same result. After I got up to 17mg my doctor added Humira. I took that for two years before I had to go off of it for other reasons. I'm now on 25mg of MTX alone and doing pretty well.
Chances are you'll do fine on MTX alone for a while anyway. Often it's not real good when you're below 10 or 12mg. Some do ok....but most are still on predisone or use another DMARD also. Why their doctors won't increase it and let them just use the MTX I'm not real sure. Some can't handle a dose as high as 25mg and some manage just fine.
The time I was on such a high dose of predisone for that illness I was talking about I didn't have to tapper down all the way either. My GP is the one that prescribed it and I thought it seemed strange and I called my RD. He said I'd be fine since it was such a short course. I'd double check with your RD and go with his advice.
Thanks Lovie for the info. Hopefully I can stay at 12 mg of MTX for awhile. I seem to be tolerating it better this week than last week. I'm fortunate to be able to tolerate medicine pretty well once I'm on it for a little while. I always said my mother had an iron stomach for medicine - - she was on pred. for years. Hopefully I inherited that from her along with the RA.