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. :crying:

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??

[me2]

Well, now you have me curious too. So , I found one article that talks about the two-- Methotrexate and Azathioprine Equivalent for Vasculitis Maintenance (http://www.medpagetoday.com/HematologyOncology/Hematology/12270)

[MikeG-2012]

Hi ... uh, Bulldog?

Im afraid that was/is my fault. I told her once that it was time for the timid puppy to change to a stubborn bulldog with regards to her docs. She did, made me proud, and is now on the path to getting better!

Nice cel to hear that they are getting meds rolling Deb. I'm not on mtx, so am no help, sorry!

[debhaz22]

So there's really no difference between the 2, right?

[pberggren1]

Well, I think the MTX does not work as well as the Imuran and is a bit more toxic. I do believe the MTX may have caused my hearing loss in 2004.

[debhaz22]

Yep Mike, you are TOTALLY responsible for giving me that nickname. Actually, it's kinda grown on me ;)
Thanks,
"Bulldog" ;)

[annekat]

My 2 cents worth is that 1) Deb is being given MTX as an initial treatment, not as maintenance as in the study cited above, FWIW, and 2) in all the reading I've done on this forum, it's my impression that MTX seems to be prescribed far more often than Imuran. I don't know enough to think one would be preferable to the other, but I'd trust Dr. Seo's judgement here in deciding on MTX.

[debhaz22]

Thanks so much Anne, that makes me feel so much better! I need to trust my dr.
:)

[annekat]

You're welcome, and if for some reason the MTX doesn't work out for you, there's always the Imuran to try next. Although I've heard there's some sort of test for that one, to see if your body has a certain something, or not, that would make it contraindicated. I can't remember the specifics but know it's been discussed on here, and maybe someone can clarify.

[Jaypfei]

Has hearing loss been associated with methotrexate? For me personally, my hearing went prior to being treated with methotrexate. I wasn't on it for too long before being taken off due to liver distress. I'm pretty sure it was the GPA and most likely the massive doses of a drug called Vancamyacin prior to being dx'd. Which that drug does have hearing loss associated with it.

[annekat]

Has hearing loss been associated with methotrexate? For me personally, my hearing went prior to being treated with methotrexate. I wasn't on it for too long before being taken off due to liver distress. I'm pretty sure it was the GPA and most likely the massive doses of a drug called Vancamyacin prior to being dx'd. Which that drug does have hearing loss associated with it.
I haven't heard of that drug starting with V, but I do know that many of us on here have hearing loss and it is due to the GPA. For some it is permanent, and for others, not. One of my ears got some nerve damage during a severe ear infection at the start of my GPA, and both of them have conductive loss due to malfunctioning eustachian tubes from all the inflammation and damage in the nasal, sinus and ear areas. There are different scenarios. I haven't heard of hearing loss being due to MTX,

[mishb]

I'm just glad you are finally starting something Deb, whether it's MTX or Imuran. :thumbsup:

I have not had any issues with MTX, just a headache the next day. I take it with my evening meal and then I get a few hours and then bed for some sleep.
I have never felt ill taking it.

Two things my rheumy told me to remember.......
1. don't take folic acid/folate on the day you take MTX and
2. if you touch the tablets, make sure you wash your hands before doing anything else. don't touch your face or eyes before washing your hands.
I always tip the required amount of tablets into the lid of the pill bottle and take them that way - then I don't need to touch them at all.
I only take 2 tablets which are 10mg each which seems way better than taking four or six tablets.

I would also trust Dr Seo's judgement. Sangye has always spoken very highly of him. If he recommends this protocol, then you are on the right track.

Good luck with it all and we are here for you

[me2]

I was thinking the same thing Michelle- that Sangye's endorsement of Dr Seo would be very, very re-assuring to me.

[debhaz22]

Hi Michelle,
Thanks for the tips!
I never heard about not taking the MTX and folic acid on same day, maybe he forgot to tell me this?? Did your Rheumy tell you why to not take them together?
THANKS!

[Jaypfei]

I haven't heard of that drug starting with V, but I do know that many of us on here have hearing loss and it is due to the GPA. For some it is permanent, and for others, not. One of my ears got some nerve damage during a severe ear infection at the start of my GPA, and both of them have conductive loss due to malfunctioning eustachian tubes from all the inflammation and damage in the nasal, sinus and ear areas. There are different scenarios. I haven't heard of hearing loss being due to MTX,

Oh I am very aware of hearing loss due to GPA. Vancomycin and Rocephin were the last two drugs I was treated with prior to being diagnosed with GPA. Vancomycin is a pretty hard hitting antibiotic. It wasn't until some months later that I had read about one of the side affects......hearing loss.
Of course once they figured out I had GPA, the previously mentioned drugs were stopped and the usual cocktail of pred, cytoxin, bactrim were administered.

[jvilner]

I know folic acid should be taken 24 hrs after mtx. Helps with the side effects. I was on mtx for 2 yrs. if u take it before than the mtx is less effective.

[Alysia]

Hi Deb,
congrat for finally starting the treatment. I was also on mtx and pred. I took the mtx diffrently: 2.5mgX 6 days a week in the morning. at the evening I took the folic acid. I was told that it takes time untill it start working, although for me it didnt work. I couldnt bear Imuran because I vomit it. only rtx works for me.
did you take it already ? how do you feel ?

[acker]

Hi Deb H,
Don't be scared, you'll get loads of help from the great people on this site, I started my meds nearly 3yrs ago, to many to name, just to say 16 different tabs, 2 or 3 times a day. I only joined this site a few weeks ago, and have had so much good advice and support. Hope you are feeling loads better very soon. :thumbsup: Acker

[Dirty Don]

I take folic daily along with other drugs and with the mtx on Saturdays. Except for not taking enough of it so there was hair loss, I haven't had any problems with it.

[godgirl]

Deb,
I take 8 pills of MTX every Sunday night. I've never split it, and I take folic acid the same day. Personally, I've not had any nausea. My biggest issue is fatigue. I started on 6, then went up to 8 a few weeks ago.

The fatigue for me was bad at first, but as the weeks went by, it got much better. When they upped the dose, it came back, but even now, it's not as bad as it was and I expect it to keep getting better. I've not had to stop work or school because of it (I take classes part time). I also started getting mouth sores at 8 pills, but went up to 2mg folic acid and it took care of that almost immediately. My hair is also thinning terribly right now, and my next appt is this week. Going to talk to the doc about upping the folic to 3mg to see if that stops it.

I'm wondering if anyone else was prescribed the generic of Prilosec (omeprazole, 20mg). I take one of those a day - per my rheumatologist. When she prescribed it, I told her I didn't have issues with heartburn or stomach issues. She said I would if I didn't take it. So I take one every night. I'm wondering if that's why I have no nausea. Doesn't matter, though. I'm just glad I don't have any issues with it!!!

[annekat]

Oh I am very aware of hearing loss due to GPA. Vancomycin and Rocephin were the last two drugs I was treated with prior to being diagnosed with GPA. Vancomycin is a pretty hard hitting antibiotic. It wasn't until some months later that I had read about one of the side affects......hearing loss.
Of course once they figured out I had GPA, the previously mentioned drugs were stopped and the usual cocktail of pred, cytoxin, bactrim were administered. That is interesting.... I had Rocephin by IV over 5 days after my big ear infection... does it also possibly cause hearing loss? It was given just to make sure I didn't get mastoiditis, since the ear infection was so severe. I think the nerve damage to the one ear had already been done, but the other heard fine at that point if I remember right. The conductive loss to both ears occurred later over time. It hadn't occurred to me that a drug could have caused it, but I'm still thinking it was the GPA. (I hadn't been dx'ed at the time I got the Rocephin.)

[Alysia]

That is interesting.... I had Rocephin by IV over 5 days after my big ear infection... does it also possibly cause hearing loss? It was given just to make sure I didn't get mastoiditis, since the ear infection was so severe. I think the nerve damage to the one ear had already been done, but the other heard fine at that point if I remember right. The conductive loss to both ears occurred later over time. It hadn't occurred to me that a drug could have caused it, but I'm still thinking it was the GPA. (I hadn't been dx'ed at the time I got the Rocephin.)

I got Rocephin in IV for 7 days at my acute onset, when they thought that I have pneumonia. NO hearing loss because of it.

[murmur]

I was on 60mg of Pred, and my face did swell and I felt weaker, but being on 12.5, I'm practically back to normal. Bactrim can cause a little nausea at first, but you can get used to it (also depends on your dose; if you feel too sick, tell your doc). I felt better by eating glutton free and I'm not sure if that has anything to do with WG, but it helped. Don't be scared I'm sure you are a strong person and can get threw this :thumbsup: