Starting "the drugs" tomorrow and SCARED

[debhaz22]

Hi all,
Just back from another trip to JH and they said I need to start Methotrexate (6 pills every Saturday, split 3 am, and 3 pm), 20mg Prednisone, Bactrim and Folic Acid daily.

PLEASE tell me what to expect, or how you handled the drugs, what helped...ANY advice or tips I would SO VERY MUCH appreciate.
Thanks,
Deb H.
("Bulldog" to Mike and Deb C

[KimH]

I took the methotrexate by injection and I avoided the nausea that some people get. The folic acid will definitely help prevent hair loss. You might need something like prilosec if your stomach is sensative to the pred. The bactrim was no problem. I tolerated all those meds with no side effects. I didn't like to give myself the injection so my husband gave them to me. Good luck with everything and I hope you feel better soon.

[Dirty Don]

Hi Deb, glad you're finally on a protocol...you will start to feel better soon. Good that your docs started you on a split dose of mtx as it can upset your stomach, etc. if taken all at once. I even split my dose to Sat/Sun, doc said it is OK as long as it's within 24 hours of ingestion. You may feel some nausea depending on how sensitive you are to it...but it will pass in any case. Some people take it at nite so as to get thru any problems while they sleep. The pred is high enough to help you but shouldn't have too much of an effect on your daily life...you may feel it more as you drop and near a 'margin' of pred that your body may want or need at the time. Bactrim should help you stay away from such things as pneumonia, etc. The folic is for the mtx but it also stops hair loss if you experience any of that with the mtx...the doc should increase your folic (mine went to 3x) and the hair loss stopped...in fact some of it came back in curly for a short while! I've been on a similar dosage since the beginning almost 3 yrs ago now. No longer on pred (has taken me 2 times to get off it...I think I'm off now!), no Bactrim ever for me, and I tried reducing the folic but the hair began falling out again...may be stuck with that one till I'm off mtx! LOL! Hope this gets you going now...be patient as it takes somewhere in the 5-6 weeks range to become truly effective for the mtx. And stick to your protocols, don't mess with them, at least not now...find out if they work well enough and you and your docs will make adjustments down the road. Best to you...Bulldog? Really!? LOL!

[me2]

Hi, I only have time for a quick comment but I know what its like starting a new treatment.
I have been taking 7 pills of Methotrexate for about a year and I take them all at once. I had not even heard of splitting the dose (although I will definately remember this idea) and I feel no effects at all. No nauesea , no nothing. Currently I'm taking 30 mg prednisone although I hope to reduce as I had a Rituxan infusion about a month ago.
Some of these drugs affect each of us differently but I'm going to throw some optimism your way that you won't feel much at all (like me) - except that it makes you gradually feel better ... uh, Bulldog?

[carriej22]

I don't want to be scary but I had a really bad reaction to methotrexate (I did my own injections) about 12 weeks in. I had no real other symptoms to it (some weirdness around injection site, maybe fatigue but that's it) If you're having ANY breathing problems while on it report immediately. Someone told me to on here, and I kind of put it off as nothing and I ended up on a ventilator. It's not a common reaction but if you notice any breathing issues (I would literally start choking and not be able to catch my breath) get checked right away and tell them you're on methotrexate.

As for everything else, seems like pretty standard treatment. Not much prednisone though. I was on 100mg at first and then I stayed on 50mgs for a quite awhile. As of last week I am off the pred though, for the first time in nearly two years.

[Pete]

Hi Deb,

For the most part, you have nothing to worry about. I have a little fatigue the day after I take my mtx (I take 7 pills split 3 in am and 4 in pm on Wednesdays). I've taken bactrim for four years with no ill effects. I've taken folic acid for almost two years and kept my hair (although it has gotten just a little bit wiry). Prednisone is a great drug. At high doses you will likely experience some degree of weight gain as your appetite becomes almost insatiable. Longer term, you may be at risk for osteoporosis as it leaches calcium from your bones. You may want to take an OTC calcium/vitamin D supplement for this.

Hope the meds do what they're supposed to without playing any tricks on you.

[annekat]

Nothing to be afraid of, Deb.... it's good you are getting treatment started. I take the same dose of MTX and sometimes feel a little funky, not always, you do get used to it unless you are one of the few unlucky ones that have problems with it. Helps to take it with food, get enough sleep, drink plenty water, take care of yourself in general. Your pred dose is low but perhaps all you need... that would be a very good thing. Best of luck, and keep us posted!

[jvilner]

Know how you feel. But what can we do, we must take our meds. It is scary for sure. Worst case is they will change your meds. Gotta go with the flow. Don't stress- will only make things worse. You are stronger than you know! Good luck with it all!


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[pberggren1]

Deb, who do you see there? Why Methotrexate and not Imuran? I'd be going with Imuran if it was me.

[debhaz22]

Hey Phil, I see Dr. Seo at JH. Whats the difference between the 2 drugs??