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Posted 11/11/2008 5:42 PM (GMT 0)
Just wondering..............

 

For those of you on MTX....did your body eventually get used to the weekly dose ?  My question is....those of you who suffered the side effects from mtx...are you better on it now?  Do some of you suffer the side effects after EVERY dose?  I have been on this drug for a year now, and I still feel horrid about 8-10 hours after I take my dose.....and a good part of tuesdays is battling nausea and extreme fatigue.  Shouldnt my body be used to the drug by now?  Have any of you had to stop this drug because of the persistant side effects? 

 

My rheumy thinks it's all in my head, and I want to just be firm and tell him I want OFF, but...I am afraid he will not want me as a patient anymore..I tried to talk him into getting me off of it in June, but he was adamant I stay on it....despite my whining about the quality of life I have for those days right after my dose.  He claims that it should be out of my system within 24 hrs...hmmmmm tell my stomache that cry

 

Thanks for any input.

 

Gentle hugs

Diane

Posted 11/12/2008 12:04 AM (GMT 0)
Dianne,

I had the same problems with mtx, I ended up switching from the pill form to the injectable form of mtx. The switch made me tolerate mtx more, and made my stomach upset go away. I still felt tired, etc, but my extreme nausea went away. I hope this helps!

Karen
Posted 11/12/2008 3:34 AM (GMT 0)
I also couldn't tolerate mtx at higher doses, felt nauseous all the time, couldn't eat fatty food, seemed to be really upsetting my liver. My rheumy put me on a low dose just 10mg a week with humira and now I have no side effects at all. Good luck. I think it is really hard on your digestive system. I also can't believe how unsympathetic your rheumy is, its such a horrible disease you don't want to have to deal with side effects on top of everything else!!! Find a caring rheumy, it's lovely to have one that listens and doesn't just read test results.

Posted 11/12/2008 3:52 AM (GMT 0)
I was horribly sick on the MTX the first month or so but after that I adjusted to the 8 pills per week and now if I try to taper down, I have awful joint pain.

Posted 11/12/2008 2:48 PM (GMT 0)
Hi,

When I started on it I took over the counter pepcid.  I never did have a problem.  You can check with your rheumy to see if it is ok to take it.  I think I took it 2x a day.  But I was on prednisone too.  Now if I think I may have a problem, I take a day or 2 of pepcid before my dose.

Good luck. 

Sue

Posted 11/13/2008 1:58 PM (GMT 0)

Thank you so much for your responses.

I cant do the injections as our insurance will cover only the pills, and the injectable mtx is very very expensive.

One week...about 2 months ago..I was having tummy troubles, and decided to not take my mtx for that week, and by the end of the second week I had the extreme pain happen to me as well momto3.  I figured it was payback for skipping a dose shocked

Sue, I take alot of gravol (dramamine) now, the first couple of days of mtx...but maybe I need something like the pepcid instead. I find that tuesday and wednesdays my stomache is constantly rolling, and it sounds like there is a thunderstorm going on in there rolleyes    Very noisy let me tell ya...so I know I am not imagining how bad I feel.

I will try it.  Gravol is an anti nauseant..whereas pepcid is good for relieving gassy stomache and indigestion? ..hmmm..it will be worth a try!!  I thought that Folic Acid was supposed to help with mtx side effects...my doc rx 5 mg 2 days after the dose...but I took 5 the day of the dose..and the following day...but I am not sure it helped at all.

Thanks again

Diane  

Posted 11/13/2008 3:01 PM (GMT 0)

Hi Diane,

I have lots of tummy troubles too, but mine started after I discontinued the Plaquenil? Very strange!!! I don't like the MTX but it is almost like I'm forced to take it otherwise there is the awful joint pain..I thought at one point I really didn't need the full 8 pills and decided to go down to four for a couple of weeks in a row...huge mistake, and I ended up needing a Medrol dose pack to get me out of my bind..I never told my rheumy and the nurse thought it was strange that I was in so much pain rolleyes I won't do that again!! As for the shots, even if my insurance covered them, I already do two Enbrel injections per week so the thought of more shots sad  Thank goodness for pills! I wish the Enbrel came in pill form.

I will try the Pepcid though, thanks to the person who mentioned it!

I know you are not imagining it, and I don't really feel 100% either and I'm sure it is from the meds..right now I can't drink the amount of water I'm supposed to which is another story for another day, but with the MTX that doesn't work too well. 

Have you tried Luecovorin? (sp?) I took that for a bit when I first started out on the MTX and it helped because for a few weeks I couldn't get out of bed after taking it the fatigue was that intense.

Posted 11/13/2008 4:16 PM (GMT 0)

Hi Mom

I went down to 5 pills/week, and I am not in pain..just the tummy troubles.  It's odd that you had major tummy troubles since going off Plaquenal.  My doc took me off of it too, but I never cnnected the extreme nausea to that.  Gotta say though...I phoned the phcy and found out I still had a good number of repeats on the Plaq...so I put myself back on it...LMBO....if the doc finds out...he will probably boot me out of his office.  I dont care...desperate measures require desperate solutions.  My family doctor is so much more compassionate than my rheumy.  She will probably back me up if he dismisses me.  I am tired of his only interest being lab reports.  he said he could give nothing for pain...the family doc gave me percocet.  Although I rarely take them...not so long ago I was in agony..probably stress related...but in horrid pain nonetheless.  When I took the percocet...it didnt completely aleviate my pain..but it certainly made it tolerable.  Once I was over the flare, I started taking robaxacet for muscle pain...and it is helping quite a bit.  Luckily, I havent had to take ANYTHING for pain in the past 2 weeks...hmmmm is it because I went back on the plaquinal?  I was on just the Plaq since my dx 11 yrs ago.  5 years ago I had a traumatic event that caused a blood clot to my lung, and pericarditis.  So was put on high doses of prednisone.  Eventually...this rheumy got me off the prednisone...but I think he should never have made me go off the plaquinal..as I havent felt the same since.  I have been back on it since.....July...so I am thinking that going back on it has had a very postive affect on me.  Wouldn't be surprised if I go back to 1000 mg of plaq again..I wouldnt even need the mtx.

I know it's very wrong to play doctor wth serious illnesses...but.....I honestly believe there are doctors out there who are NOT worth their salt skull

I am going to ask my family doctor if she will treat my R/a and fibro.  She is taking care of her husband who has the same diseases as me..(except for the diabetes that is)

 

Hugs,

Diane

Posted 11/13/2008 5:58 PM (GMT 0)

Hi Diane..

I don't blame you about the Plaq!!! I still have refills myself at the pharmacy but with the eye problems that I had, I was told no more but without it, the joint pain is pretty miserable.  I know the rheumy hears me when I tell him this but unless you have it you really don't get it rolleyes I have thought about getting another refill but I'm scared for my vision sad Yes, without the Plaq, I have had rashes, itchy skin, tummy troubles, exhaustion, you name it! Oh and shortness of breath.  Before I stopped the Plaq, I was on the treadmill walking and feeling pretty good and now I can't even walk 1/2 mile without feeling like I'm going to pass out..heart is pounding, I'm dizzy and can't breath.  Everyone talks about finding their cocktail of meds? Mine was the MTX, Plaq and Enbrel and now I'm back to the drawing board.  I think Plaquenil is fantastic and it's great that you are back on it :-) As long as your eyes are healthy by all means self treat tongue

I've taken Darvon and that really doesn't make a dent but have had Pred in the past (love that!!) would take it daily if I could get away with it but he never gives me that sad  

Sounds like you have a really great pcp and those are hard to find :-) It is hard to find a good doc these days...we had to switch insurance companies and I'm still trying to find a replacement for mine.

Posted 11/14/2008 12:27 AM (GMT 0)
The other thing to watch out for is your vitamin levels. My GP tested me because I'd been on mtx fo over a year as well as other drugs off and on (arava, sulphasolasine, prednisone) and I was very low in Zinc, vitamin D and calcium. Bit of a worry that all these drugs are actually quite toxic to our general health. It may be worth checking with your GP incase you have a vitamin deficiency

adding to your troubles. Been on supplements for 3 months now and my nausea is completely gone, but I am now on a lower dose of mtx as well.

Posted 11/14/2008 12:42 PM (GMT 0)

Morning Mom, Golitho

Breathing problems?!!  I have times where I have alot of wheezing and coughing, and I had seen something about this on this board but cant remember how far back. There was a post about sinus troubles, and lung problems that were associated with the mtx.  I figured I would keep quiet about the wheezing in the hopes it was just something my body was fighting..like a chest cold or something.  It isnt a daily thing...but it happens often enough.  I'm sorry you had the eye problems with the plaq...I was lucky I guess that way.

I wonder if this nausea from mtx has something to do with vitamin deficiency?  Didnt even think of that Golitho!  What the heck is in this stuff?? skull    Might help with the RA, but maybe for some people, it eventually brings on a host of other problems devil

I take soooo many pills...but this one is the black sheep of my family of meds nono

I have an apptmt next week with family doc...hopefully she will have some info on this drug.

Hope you are having a decent start to your day.

Hugs

Diane

 

Posted 11/14/2008 9:53 PM (GMT 0)
Sometimes vitamin deficiencies can happen...I'm low in vitamin B12 and I take a supplement and I have had low red blood cell counts as well so it could be the meds..who knows? My insurance switched and the doctor who tested me for those isn't on our list any longer so I never did get to follow up on it and when the rheumy tests my blood count he always says it's fine so I guess it isn't anything to worry about...

I have started having the breathing issues and I'm not sure if it is because I'm off the plaq or if it is from the Enbrel or the combo of Enbrel and MTX..it is just so hard to tell anymore! My husband says it can be because I'm low in red blood cells but like I said my count always seems to be normal now.

Keep an eye on your breathing though...

Hugs to you!

Posted 11/14/2008 10:14 PM (GMT 0)

Mom...thank you so much for all your help.  If I find out anything on the breathing wheezing thing with my doctor..I will post it here for those interested.

Hope you are having a wonderful evening

Hugs Diane

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