Was put on MTX today

[Debbie C]

I went and saw one of my reumys today and he is trying me out on 3-2.5mg of MTX a week and 2- 400mcg of folic acid every day still on the 10 mg of pred. He said if I can handle this ,he wants to try to get me of preds. YEA!!!! I just hope I don't have any problems with this since its seems every thing they try I have something happen. The thing I don't like is that he only wants me to have bloodwork every 2 months and see me in 3 months. I think I should be monitored more than that at first or is that usual and its just my anxiety kicking in. My pharmacist did tell me it is not good to take prilesec with this drug because it could elevate the levels of MTX in your system.:scared:

[pberggren1]

Deb, I forget, how long have you been on treatment so far? What meds were you on before mtx?

I would be going for regular labs at least once a month and see my doc after lab results are in the next day or afternoon. 3 months sounds like he does not know Wegs.

[Dryhill]

Debra, I am on 20mg of MTX a week (and 70mg of Folic Acid three days after taking the MTX), but I have to have a blood test, just for the MTX, every two weeks. MTX can build up and cause problems with the liver, even to the point of damaging it, this was explained to me by my rheumy, my GP and by the pharmacist. My GP's surgery carry out the vampire bit and keep a record of the results. As it only takes a few minutes to take the blood sample I do not have to make an appointment, I forgot which week it was and missed going, on the Friday afternoon I was contacted on my mobile to get down there asap. They really had a go at me about nearly missing the blood test, so it would seem to be pretty importnat to be checked regularly.

Jim

[Debbie C]

Deb, I forget, how long have you been on treatment so far? What meds were you on before mtx?

I would be going for regular labs at least once a month and see my doc after lab results are in the next day or afternoon. 3 months sounds like he does not know Wegs.

I started treament Sept. 2010 and was put on 150mg CTX,50mg pred. and bactrim 3 times a week.I went into remission in March last year and was taken off everything, then it came back and that when they tried the RTX infusion which I could only have one of since I had bad side effects, so then it was Imuran 100mg,then 50mg and I couldn't handle that so they just have kept me on 10 mg of preds for the last for the last 5 months. On my last scan that I just had 2 weeks ago, I have 2 nodules in my lung and they have shrunk to have there size since the scan prior.
Thats what I was thinking about my bloodwork,with my history of not being able to tolerate these drugs that he should check me more closely.And I was checking out this drug on different sites lasts nite and came across a forum of people that suffer from RA and I was reading how it really messed up their stomach and had to have injections instead.And since my stomach is so messed up now I am really scared about taking this, to the point that I really can not bring myself to do it today. I go see my pulmanary dr. tommorrow and will talk to him. I also have copd and have had a terrible time breathing lately,but he'll probably just go along with what the reumy said.
Sorry for rambling on so much but I quess I read to much and then I start thinking the worst but I am concerned he doesn't want to see me for 3 months after starting a new med. especially how screwed up my stomach is now. Bet your sorry u asked !!!!!

[NicShaf]

I've been on MTX for a couple weeks now, actually more like 2 months. I have a similar timeline, diagnosed in late 2010, I was on CTX for about a year. I'm also on a similar schedule...blood every 6 weeks, and I see my Rheumy every 3 months unless something comes up, in which case I can email or call him anytime.

I have found that my stomach is a little more sensitive, but if I don't eat acidic or sugary foods, I feel OK.

If you're seeing your pulmonary tomorrow, I would ask about MTX and your lungs. My Rheumy was concerned that my nodules were completely healed before starting MTX because it can irritate the lungs. My Pulmy diagnosed them as completely healed with minimal scaring. My Rheumy still didn't want me on MTX, but after some blood tests showed I couldn't take Immuran, it was the only other option.

[pberggren1]

I'm not sorry I asked at all.

Some more questions:

When was the previous CT scan done of your chest prior to the one you had 2 weeks ago?

Do you take omeprazole or another acid blocker for your stomach?

COPD? Who dx with that? I have a feeling that it could be Wegs damage. Do you have to take bronchio dilaters? Have you ever smoked?

[Debbie C]

Debra, I am on 20mg of MTX a week (and 70mg of Folic Acid three days after taking the MTX), but I have to have a blood test, just for the MTX, every two weeks. MTX can build up and cause problems with the liver, even to the point of damaging it, this was explained to me by my rheumy, my GP and by the pharmacist. My GP's surgery carry out the vampire bit and keep a record of the results. As it only takes a few minutes to take the blood sample I do not have to make an appointment, I forgot which week it was and missed going, on the Friday afternoon I was contacted on my mobile to get down there asap. They really had a go at me about nearly missing the blood test, so it would seem to be pretty importnat to be checked regularly.

Jim

I wish I had the Drs. u have. They seem to be really watching out for u. You are taking alot more than I will be ( I'm only going to be taking 7.5 mg a week and 2 folic acid pills every day ) Have u ever had any problems with it? If so u probably shouldn't tell me they will get me even more worried !!!!:scared:

[Debbie C]

I'm not sorry I asked at all.

Some more questions:

When was the previous CT scan done of your chest prior to the one you had 2 weeks ago?

Do you take omeprazole or another acid blocker for your stomach?

COPD? Who dx with that? I have a feeling that it could be Wegs damage. Do you have to take bronchio dilaters? Have you ever smoked?

My previous scan was done 2 months ago, so I don't know if the pred. alone caused the nodules to shrink or if the other stuff was still in my system.
I take prilesec for my stomach but the pharmistist pointed out yesterday that the 2 drugs don't mix well. My reumy didn't say anything about it. So when I start taking the MTX, I'm gonna lay off taking the prilesec for awhile.
The COPD was told to be by my pulmonary dr. and the radiologist that read the scans also mentioned it. I smoked for years but quit the day I had my partial lobectomy. I do have inhalers but never use them ( not because I'm scared to !!! ) but I don't want to become dependent on them.I carry one in my purse in case things got really bad but knock on wood never used it.

[Debbie C]

I've been on MTX for a couple weeks now, actually more like 2 months. I have a similar timeline, diagnosed in late 2010, I was on CTX for about a year. I'm also on a similar schedule...blood every 6 weeks, and I see my Rheumy every 3 months unless something comes up, in which case I can email or call him anytime.

I have found that my stomach is a little more sensitive, but if I don't eat acidic or sugary foods, I feel OK.

If you're seeing your pulmonary tomorrow, I would ask about MTX and your lungs. My Rheumy was concerned that my nodules were completely healed before starting MTX because it can irritate the lungs. My Pulmy diagnosed them as completely healed with minimal scaring. My Rheumy still didn't want me on MTX, but after some blood tests showed I couldn't take Immuran, it was the only other option.

Hey Nicole, I'm glad your still doing so well and that yr lungs had no damage. My reumy saw the report of my scan that showed I had nodules and copd and still wants me on it and when I told him I wanted a blood test to see if I would have a reaction to Imuran ( because another dr. told me I should...I didn't tell him that though ) he said there was no need for it. I also told him about this forum and how I get alot of info from it....he didn't seem to happy about it at all. Ones of biggest problems I am having right now is that I am on state Medicaid and alot of drs. don't take it, in Sept. I will be on straight Medicare so maybe I can find a better dr.

[Dianne]

I am on 25 mg of MTX a week, and take folic acid and 40 mg of omeprazole daily. I get labs done every 4 weeks and see my Rheumy every 6 weeks.

[pberggren1]

Deb, it is important that you stay on a acid blocker to protect your stomach while on pred. I would contact your doc ASAP and ask him what he would suggest. The standard seems to be Omeprazole.

COPD makes sense if you smoked for years.

I tell my doc all the stuff we talk about here on the Forum all the time and he encourages me to come on here on a regualr basis.

[Thakator]

Debra,
My vote in your survey request: no, it's not simply your anxiety. I too feel that three months between visits is way too long. If you need the MTX, then the Wegs is too close to the surface or is actually on the loose - - either way, things could happen too quickly for you to wait three months to go over your current symptoms and bloodwork status. My rheumie would say one month at most.

Also, while I don't know what your doc has in mind for you, please remember that the customary dose of MTX (once it's been determined that one can tolerate it) is in the low 20's mg/week. Ron

[drz]

Another vote for monthly labs. I asked my Wegs consultant about cutting back to every six weeks since i have been in remission and rather stable for several months, but he recommended I stay on monthly labs after discussing his reasons why for several minutes. My treating doctor for Wegs was OK about cutting back to even two months but I decided to stay with monthly lab work for rest of year.

[Debbie C]

I am on 25 mg of MTX a week, and take folic acid and 40 mg of omeprazole daily. I get labs done every 4 weeks and see my Rheumy every 6 weeks.
How long have u been taking it ? The print out I got from the pharmacist shows that taking omeprazole may increase the blood level of MTX and may lead to higher chance of side effects, thats why I was gonna lay off the prilesec for awhile.
Where is Liberty Center, Ohio ?

[Dianne]

I've been taking them for about a year now and don't seem to be having any problems with it. Liberty Center (just a small town) is about 35-40 miles from Toledo . I see you are from Youngstown - a few people I work with live there.

[Sangye]

Debra, I think it's important to have monthly labs when starting a new medication like mtx. It can cause liver problems among other things. Have you checked about using pantoprazole (Protonix) instead of prilosec? I don't know if it has the same interaction with mtx--worth checking. Protonix was the only acid-blocker that worked for me.

Have you considered being treated at Cleveland Clinic? It sounds like you're having to direct your own care too much. That is exhausting, anxiety-inducing and dangerous. If CC is far, you could go occasionally and have them work with your local docs.

Phil, diagnosing COPD is not based on symptoms alone.

[Debbie C]

[QUOTE=Sangye;57672]Debra, I think it's important to have monthly labs when starting a new medication like mtx. It can cause liver problems among other things. Have you checked about using pantoprazole (Protonix) instead of prilosec? I don't know if it has the same interaction with mtx--worth checking. Protonix was the only acid-blocker that worked for me.

Have you considered being treated at Cleveland Clinic? It sounds like you're having to direct your own care too much. That is exhausting, anxiety-inducing and dangerous. If CC is far, you could go occasionally and have them work with your local docs.

Hi Sangye, I used to take protonix a long time ago ,I don't remeber why I switched. And yes I'm going to the CC on the 23rd, I am aslo going to my pulmonary dr. today, which this appt is just in time ,I have had such a had time breathing the last couple of days, I don't know if its because its the sudden drop of weather change or what but I have really been feeling crappy. Also I made an appt. to see a kidney dr. for next week. I am determined to get this under control. I do have a script from a reumy I used to see for lab and urainalysis (SP?) work that doesn't expire so I can always take that in once a month and have my gp look at it. I'm just not anxious (or maybe too anxious !) about this MTX stuff.

[Jaha]

Debra C,

I go to CC and have great care and concern given to my condition. They also have a wonderful pulmonogoly dept there, who was the first to dx me with Wegs. I'm have always been able to get a hold of my Rheumy with any questions I have, she calls me back in a timely manner. They also have me do labs every week locally and then it is faxed directly to her nurse. Did you make your appt with the kidney dr at CC? I think it is always a good idea to keep all the specialist under one roof, for communication purposes. I wish you all the best with your visit to CC. You will be amazed at the care you are given there.
Jana

[pberggren1]

Phil, diagnosing COPD is not based on symptoms alone.

I know. Are you forgetting I'm Dr. Phil?...........lol.

[Debbie C]

Jana no I have an appt. to see a kidney dr. here in town and my pulm dr. is here also. I went and saw him today and he was very happy with my scan . I have one nodule that has shrunk down to almost nothing. The problem now is for the last few days I have had a hard time breathing and he is setting me up to have another scan done to see if any clots in my lung. Everyone at my house seems to think its the weather change and I live surrounded by a park..lots of trees and pullen, so I don't know what the problem is. I'll probably hear about the scan tomorrow. But I can't get to the CC all the time ..thats why I try to keep my drs. local and maybe they can communicate back and forth. Still haven't started the MTX, I want to feel better first.

[Debbie C]

Jana , who are yr Drs at CC ?

[Dryhill]

I wish I had the Drs. u have. They seem to be really watching out for u. You are taking alot more than I will be ( I'm only going to be taking 7.5 mg a week and 2 folic acid pills every day ) Have u ever had any problems with it? If so u probably shouldn't tell me they will get me even more worried !!!!:scared:

Debra, I have had no problems. I am lucky with my doctors, but I should stress that the idea of the two weekly blood tests is not their idea it is an NHS requirement, so the UK government considers the risks of liver complications seriously.

Jim

[Sangye]

Debra, that's great. I forget that you go to CC. I trust them to give you the very best advice and treatment.

[Debbie C]

OK guys..I think I am really staring to lose it over taking the MTX. I should have started a few weeks ago but since I had that breathing problem and weaning off preds to fast set me back,I held off. But I know I should take them now and I just can't bring myself to do it. I took them out of the bottle today with all good intentions and there they sit. I got on the computer and started reading all the possible side effects (which I know they have to list everything ) and I just break down crying knowing I have to take more medicine that in the long run could cause more harm then good. Then I don't know when to take them as far as the timing,should I take the steroids,folic acid the MTX all at the same time or split it up over the day? I can't call my dr. cuz he already thinks I'm on them. I think I need to call a pysch dr. for depression cuz this this all really getting to me now.:scared:

[Psyborg]

OK guys..I think I am really staring to lose it over taking the MTX. I should have started a few weeks ago but since I had that breathing problem and weaning off preds to fast set me back,I held off. But I know I should take them now and I just can't bring myself to do it. I took them out of the bottle today with all good intentions and there they sit. I got on the computer and started reading all the possible side effects (which I know they have to list everything ) and I just break down crying knowing I have to take more medicine that in the long run could cause more harm then good. Then I don't know when to take them as far as the timing,should I take the steroids,folic acid the MTX all at the same time or split it up over the day? I can't call my dr. cuz he already thinks I'm on them. I think I need to call a pysch dr. for depression cuz this this all really getting to me now.:scared:

Debra,

You really need to be on the MTX if that is what they've prescribed for you. I know it's a horrid sounding drug, but honestly it's better than some of the others (We seem to have an entire cast of bad drug options), and without that big drug pounding on the immune system you are really kind of only treating the symptoms with the Prednisone. If you take the MTX and keep up with your labs you should be ok to avoid any serious complications from it

I strongly advise you let your doctor know the situation, explain your feelings and they should understand. I personally take celexa to help with anger issues, but it is primarily for anxiety related issue for most people. Maybe something like that would help if the depression is getting to you.

[pberggren1]

Oh Deb, you are playing with fire. You really need to contact your doc now to get all this sorted. When I say playing with fire I mean that the Wegs can come back full force and do more damage or kill you. We don't want that. We want you around for a long time to come. Please contact your doc now.

[Debbie C]

Oh Deb, you are playing with fire. You really need to contact your doc now to get all this sorted. When I say playing with fire I mean that the Wegs can come back full force and do more damage or kill you. We don't want that. We want you around for a long time to come. Please contact your doc now.
Thanks Phil...I'm not going to call him ,I'll just start taking them tommorrow. I just don't know if I take all the pills...preds,folic acid and MTX all at once..he never told me and I can't call him on that.

[Dirty Don]

Deb, if it helps then since you won't call the doc...I am on those same things. I take the pred & folic daily, and the MTX once a week, in the prescribed doses. Also am on Lexapro to control anxieties and 'thinking too much'...something like that may help also. I believe it was Al who told me when I first came in here looking for help: if I survived the drugs for the help, then the WG would lose out. Something like that...anyway, the point is: take your meds...they are the difference between a healthier you and what WG dog could or will do to you. Best of luck, have faith in the docs...

[Dryhill]

Deb, I have been on 20mg of mtx a week since 23rd August and take 5mg of Folic Acid three days after taking the mtx, I am also on 10mg pred a day and have had no obvious side effects. You really do need to take the meds that are prescribed to you otherwise as Don says that wegs dog will be biting badly. If you get any nasty side effect then go straight to your doctor and tell them, there might be something else thay can give you.

Jim

[Lightwarrior]

Deb, if it helps then since you won't call the doc...I am on those same things. I take the pred & folic daily, and the MTX once a week, in the prescribed doses. Also am on Lexapro to control anxieties and 'thinking too much'...something like that may help also. I believe it was Al who told me when I first came in here looking for help: if I survived the drugs for the help, then the WG would lose out. Something like that...anyway, the point is: take your meds...they are the difference between a healthier you and what WG dog could or will do to you. Best of luck, have faith in the docs...

Deb, I agree with Dirty Don. I have been taking pred and folic acid daily and MTX once a week (six 2.5 pills) for two years now. The name of our game is to keep the Weg do asleep.

[Debbie C]

OK I will definately start tomorrow.I"m guessing I take my preds ( 8mg.)in the a.m with breakfast then later on in the morning take 3 folic acid pills and the 6 (2.5mg) of MTX. The thing is right now I don't feel too bad except for being tired and I have alot on my plate at the moment. My mother,whom I live with is 85 and not doing too well right now,my boyfriends mother just went into the hosp. on Mothers Day after having 2 strokes that morning and now having heart problems and he is having troubles at his job ( laying-off ) so I am trying to stay strong so I'm able to be there for everyone.And I can't do that if I'm sick from meds.,but I will start and thanks everyone for caring !! :love:

[drz]

OK I will definately start tomorrow.I"m guessing I take my preds ( 8mg.)in the a.m with breakfast then later on in the morning take 3 folic acid pills and the 6 (2.5mg) of MTX. The thing is right now I don't feel too bad except for being tired and I have alot on my plate at the moment. My mother,whom I live with is 85 and not doing too well right now,my boyfriends mother just went into the hosp. on Mothers Day after having 2 strokes that morning and now having heart problems and he is having troubles at his job ( laying-off ) so I am trying to stay strong so I'm able to be there for everyone.And I can't do that if I'm sick from meds.,but I will start and thanks everyone for caring !! :love:


Another reason to take your meds with your full plate is because you and your family don't want you in the hospital too with a big flare. Meds can help prevent a flare or reduce the intensity so it is easier to treat. Hope they go OK for you. Most people can handle those meds fine so best wishes for better health.

[Sangye]

Holy smokes, Debra I'm just seeing this. Remember that when you read about mtx side effects it includes the dosages for cancer treatment.

At any rate, none of the side effects are going to be worse than active Wegs running rampant.

[Lightwarrior]

Holy smokes, Debra I'm just seeing this. Remember that when you read about mtx side effects it includes the dosages for cancer treatment.

At any rate, none of the side effects are going to be worse than active Wegs running rampant.

I agree with Sangye, also remember that the side effects listed are ALL of those reported, even the extremely rare ones. So just because there is a side effect it doesn't mean you will experience it. I feel puny the day after and then I move on.

[Debbie C]

Well I took my pills today !!!!! I had my moments when I felt my body was in one of those old time body stretching devices and I was getting pulled from all directions but for the most part I was o.k. I guess I'll take them again next week !! I can't understand if they say I'm in remission..why I have to take pills that make me feel worse than before ------go figure. But thank u everyone for covincing me to suck it up and do what I'm supposed to.My dr. will be happy.

[Psyborg]

Hopefully if you stay in remission they can get you off the Pred and MTX in a short period of time. Good Luck...but it's best to be safe with it. And mind you I have my moments where quiting the meds sounds quite appealing :)

[mishb]

Well done Deb,

I take my pred at lunchtime with my meal and I take the MTX on a Monday night at dinner time, after the meal.
The reason I take the MTX at night is that I then have at least 10 hours of rest (and hopefully sleep) so as to avoid feeling ill during the day.
Saying this, I have not once felt ill, just very weary/leg tired for the next two days.

Remember when taking the folic acid, not to take it on the same day you take the MTX.
My rheumy also said that if my multi vitamin has folic acid in it, then not to take that on the MTX day either.
I used to only take the folic acid (5mg) on a Friday but the new Rheumy (no personality man) told me to take 1mg every day (except for MTX day) and 5mg every Friday.

I'm sure you will be fine and hopefully things will now start moving in the right direction for you.

[Debbie C]

Well done Deb,

I take my pred at lunchtime with my meal and I take the MTX on a Monday night at dinner time, after the meal.
The reason I take the MTX at night is that I then have at least 10 hours of rest (and hopefully sleep) so as to avoid feeling ill during the day.
Saying this, I have not once felt ill, just very weary/leg tired for the next two days.

Remember when taking the folic acid, not to take it on the same day you take the MTX.
My rheumy also said that if my multi vitamin has folic acid in it, then not to take that on the MTX day either.
I used to only take the folic acid (5mg) on a Friday but the new Rheumy (no personality man) told me to take 1mg every day (except for MTX day) and 5mg every Friday.

I'm sure you will be fine and hopefully things will now start moving in the right direction for you.
Thank you so much for the tip.I'll try taking the MTX later at dinner.But they didn't say not to take the folic acid the same day so I did, do u think that will matter. I just went in and looked at my instructions and it says to take 1mg daily !! I sure feel like #@*% today.

[Dirty Don]

Thank you so much for the tip.I'll try taking the MTX later at dinner.But they didn't say not to take the folic acid the same day so I did, do u think that will matter. I just went in and looked at my instructions and it says to take 1mg daily !! I sure feel like #@*% today.

Deb, there are obviously different approaches to taking 'our' drugs. For example, while I have been 'declared' in remission, I am still on pred but being weaned off it now, and still take full dose off MTX each Saturday which could last another year...sighs. Like many, the mtx made me ill for a while after, so doc had me split the dosage into 1/2 a dose 12 hours apart on Saturdays...it worked. Also, I take 3 mgs of folic every day...stopped my hair from falling out (mtx effect) and hasn't affected me in any other manner even on mtx day. Just sayin...hope you feel better soon. -Don

[Debbie C]

Thanks Don, I see my dr. at CC at the end of July so I'll just have to grin and bear it until then and see what he says. Gosh I hope my hair doesn't start falling out. I went grocery shopping today and everything I looked at made me feel sick..so I couln't stay long,came home took a nap all afternoon,now I feel pretty good. Thanks again for your info and hope you are doing well and are able to get off this nasty stuff before a years time...Take care

[Dryhill]

In the UK the NHS insists that anyone taking mtx must have a blood test every two weeks to ensure there is no build up in the liver. This is considered so important that when I collect a repeat prescription of mtx the pharmacist asks when I last had a blood test. Is the same in other countries?

Jim

[Debbie C]

In the UK the NHS insists that anyone taking mtx must have a blood test every two weeks to ensure there is no build up in the liver. This is considered so important that when I collect a repeat prescription of mtx the pharmacist asks when I last had a blood test. Is the same in other countries?

Jim
No Jim not here in the U.S. as far as the government here goes health issues seem to be the last thing they care about,the politicians are too busy seeing how they can pocket the money for themselves

[mishb]

In the UK the NHS insists that anyone taking mtx must have a blood test every two weeks to ensure there is no build up in the liver. This is considered so important that when I collect a repeat prescription of mtx the pharmacist asks when I last had a blood test. Is the same in other countries?

Jim

Blood Test is every 4 to 6 weeks here in Australia and I thought I read on another post that in USA it was every 4 weeks. You will have to look into that Deb.

I just had mine this morning.
The one last month showed increased levels on the liver so hopefully with todays, it is back in to normal range.