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Any others starting Methotrexate? I'm SCARED!

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Posted 7/22/2008 8:32 PM (GMT 0)
LBJ-I don't know if you read the begining of this thread but no one whined more before starting this-or complained about its side effects more than I did. But when I stopped my NSAID and upped the Folic Acid to three mgs a day the side effects disappeared-I don't even get tired the day after my dose anymore and the first two weeks I was really bad (of cource that is partially because the combo of mtx/nsaid almost killed me but...). At week 8 I reduced and then stopped (at week 10) my prednisone and never noticed its absence.
My doctor had allowed me to trick myself into starting mtx by "allowing" me to reduce my pred at my previous appointment. As I was leaving that appointment she handed me a lab order and told me to get those done and call her when I was ready for mtx. I was ready in two days but it took six days for me to admit it. I could not live on 2.5mgs of pred before the first dose of mtx but after dose eight I did not need pred at all.
Glad its starting to work for you.
Sj
Posted 7/26/2008 12:43 AM (GMT 0)
sjkly- That makes sense. I saw my GI today FINALLY!! YAAHH! hehehe I went in with lots of questions and I finally got to ask him about my colonoscopy so was excited to find out more there. We talked about how I'm feeling and he asked what I wanted to do, try and stay with this or stop it. I told him I was willing to keep going another 6 weeks and see what happens. He was pretty happy because if this doesn't work, he really doesn't know what to do next and he told me that, but I already knew this too. I have tried so much and we both just don't know what route to go. So, here's to six more weeks of Methotrexate!!!!! :-) I told him that I know its already working because I'm back down to 20mg of prednisone this week and not having all the problems I did a few weeks ago when I was at 20mg. I feel more confident this time to drop down
to 15mg next week. He said the following go to 10mg, and then 5mg and the week after that do 5mg every other day for a week and then hopefully done after that. Hope I can do it!!
Posted 7/26/2008 12:51 AM (GMT 0)
LBJ-are you sticking with the same dose, did your doc talk at all about ways to reduce the side effects?
Posted 7/26/2008 2:06 PM (GMT 0)
sjkly- He wants me to keep taking the same for now. I asked him if I could increase the folic acid and he wouldn't budge on it so I just
left it alone. He did say make sure I'm drinking more water and that would help. He said in 6 weeks we'll talk if he is going to keep me
on the injections or switch me to the pills. But with the pills he told me that they don't absorb fully like the injections. He said one
week I could get 80% strength and the next week only 20% so I didn't like that too much. I think I would rather stick with the injections
and get the full strength 100% of the time. He did say if I'm feeling much better and able to get off the prednisone that he would
probably decrease it. So hopefully I can get through the next 6 weeks and get of this prednisone.
Posted 8/1/2008 10:51 AM (GMT 0)
Good Morning Boardies,

Help, please?

Today is MTX day and when I began depressing the syringe top the needle separated from the barrel of the syringe and the MTX went on the floor.

That's a first. I'm think some must have gone in me before the two parts separated. But maybe not, I don't watch that part...

Who has a suggestion on what to do? Do I reload like 3/4ths of a dose or go with the full dose?

I'm all ears.

Kathy
Posted 8/1/2008 12:51 PM (GMT 0)
Call the dr and find out what they think. I am on it but do the pills. I know that they don't want you taking more than the dose they tell you!!
I have lupus, but wouldn't trade my MTX for the world.
Posted 8/2/2008 1:15 AM (GMT 0)
Definitely call your doc..

Or did you already?
Posted 8/2/2008 4:38 AM (GMT 0)

The side effects to the Methotrexate are hitting me hard.  Have you ever seen mentos dropped into a bottle of Coke?  That's what my stomach feels like just after taking the pills.  I take sleeping pills, so I fall asleep shortly after.  I've taken to taking my sleeping meds 20 min before the methotrexate so I can sleep faster.  I feel sick the day after taking the pills. My stomach churns, I'm exausted and my pain tolerance goes really low. My hair is thinning.  It falls out everywhere.  I run my hand through my hair and get 10-20 strands every time all day long.  I find that I get a stomach ache after I eat some foods lately. (brats, burgers, dogs, sausage)  I have sores in my mouth where my cheek gets caught between my teeth.  It seems not to heal as well.

I wonder if this is similar to what everyone else is feeling with the Methotrexate?  I suppose I will just learn to schedule less on the day after taking the meds and guard my energy better.  I was warned to avoid people who were ill because the methotrexate and the prednisone both suppress the immune system to the point that I won't be able to fight infection as well.  That is what will change my daily schedule more than everything else.  I now avoid touching things like banister rails, doorknobs and public pens.

I've gotten a response from a previous thread to try some "L" drug (another type of acid) that will help with the abdominal discomfort.  My husband has also told me that he thinks the MO, Cymbalta and MTX that I take each day must combine to promote GI distress or sensitivity, then add hard to digest foods and I should expect my stomach to ache.

Maybe it will help me loose weight.  The prednisone has be blowing up like a balloon. (Just self-distructive thoughts breaking in.  Not a good way to loose weight)

Posted 8/3/2008 11:28 PM (GMT 0)
Christina, mtx works by interfering with the enzyme responsible for reducing folic acid into folinic acid in the body and thus interferes with cell division. If you still have mouth sores that is a sign that you are not getting enough folinic acid. The l-L (levocrin?) is folinic acid-it is given to mtx patients to rescue their tissues from the effects of mtx (ususally this is a cancer protocol). You can ask your doc for a script for the rescue or buy folinic acid in a vitamin shoppe. The mouth sores are a sign of mtx toxicity so you should probably talk to your doc.
By the way the mtx could be causing the same type of sores throughout your digestive tract.
I hope you start to feel better soon.
Sj
Posted 8/7/2008 6:15 AM (GMT 0)

Hello! I'm new to this website- I found all of you when I Googled "UTIs and Methotrexate"- and up you came!

I have been on plaquenil for 1 1/2 yrs and my doc has started me on meth- 1 pill on one night w/ dinner and 2 the next. Within 2 days after the the 1st round I had the most unbelievable stomach pains which moved into my bladder, then I developed a UTI . (I haven't had 1 of those in at least 15 yrs!!) So , we thought- coincedence- off the meth,took 10 days worth of antibiotics,waited 1 wk,started the meth again. Happened again! 7 more days of Cipro. waited 1 wk- started the meth AGAIN- guess what!?( although we changed antibiotics for another 10 days) That's 3 times! So, since 6/29 I will have  been on antibiotics for 27 days.....and both my doc and the pharmacist say it's not from the drug, althought the drug lowers one's immune system. And my doc has recommended that we should look into changing to Enbrel if the meth is causing problems. Wont they ALL cause problems? Anyone have any ideas or comments? HELP!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!   PLease :)

Thank you

Posted 8/7/2008 11:35 AM (GMT 0)
Hi New MTX Friend,

Only one suggestion. IF the MTX is causing the UTI's please think about how much water you are drinking. Now double that while taking the MTX. Most side effects can be attenuated by increasing your fluid intake.

Thanks for jumping on the MTX train with us. Lots of good information and support in here.

Kathy
Posted 8/7/2008 1:02 PM (GMT 0)
Good Morning fellow MTX'r

 

I have been on MTX for about 7 months now. I whined about the side effects for quite awhile tongue

What Kathy tells you is the one thing I "thought" was not the problem, but, alas, it must have been, because now..on monday..my mtx day, I drink double what I used to drink on the first 24 hours after my dose.  I tried eating more on that day, etc etc...but it all came down to my fluid intake.  Now...(touch wood)  Monday and tuesday's are just regular days of the week now for me :-)   I drink,a glass (8 oz) of water every hour (thirsty or not)  for the first 8 hours, then gradually go back to my usual fluid intake.

So...drink drink drink...you will feel so much better for it.

Diane  

Posted 8/7/2008 3:10 PM (GMT 0)
Thank you for getting back to me about the UTIs and meth. I already drink a ton of water, but I will try to drink more. I just don't understand why one thing always seems to beget another......I've had fibromyalga since 1999- before it was a "fashionable" diagnosis- and now I get to ad RA,degenerative disc and nerve damage and I don't sleep- man, getting old is a  _itch!!!!! tongue BUT! I have terrific kids,amazing granddaughters ( ages 3,2,and 1) and a loving husband- who is really trying to be supportaive and helpful as I have become useless.

Oh well.....that's life.

Thanks for being at the other end of this thread.:)

P.S. - I'm on a high dose of Neurontin and I'm wondering if anyone has a feeling about it compared to the max dose of Lyrica for Fibro.....My doc says the dosage of Neurontin is higher than the comparable dosing for Lyrica but since I  feel they are different chemicals,maybe the Lyrica would work- he says he hasn't had much luck w/ it.Anyone?

Posted 8/8/2008 12:40 PM (GMT 0)

Hey there sbff1... welcome to the forum and a big welcome to 'the land of MTX'! tongue

What does of the Neurontin are you on?  What about Lyrica?  I went to drugs.com and checked their drug interactions for these two meds, and this is what it said:

Interactions between your selected drugs

VIEW IMAGE Neurontin (gabapentin) and Lyrica (pregabalin) (Moderate Drug-Drug)

MONITOR: Central nervous system- and/or respiratory-depressant effects may be additively or synergistically increased in patients taking multiple drugs that cause these effects, especially in elderly or debilitated patients.

MANAGEMENT: During concomitant use of these drugs, patients should be monitored for potentially excessive or prolonged CNS and respiratory depression. Ambulatory patients should be counseled to avoid hazardous activities requiring complete mental alertness and motor coordination until they know how these agents affect them, and to notify their physician if they experience excessive or prolonged CNS effects that interfere with their normal activities.

How are you doing with your UTIs?  I have managed to get mine under control with a low dose antibiotic.. I have however, stopped taking daily, and only taking it 'as needed'.. So that has helped me a bit.. But since I have been on the anti-biotics, I haven't had a UTI in 2 years.. It's been the greatest thing for me.. I have been on Enbrel for 3 years, and just started MTX this year..

I know you said you drink tons of water, but how much is that?  I'm wondering, since your body is used to a big water intake, that maybe with the MTX, even though you drink alot, you need more still? 

Good luck to you, and let us know how you are doing..

Duck

Posted 8/8/2008 2:48 PM (GMT 0)
Thank you for all your suggestions- I'm also going to get a colo-rectal exam because I am feeling "unfinished and incomplete" and I want to make sure that that area of my body isn't a contributor to my UTI's ( had back surgery in Oct and I have been blaming "these" problems on post-surigal,anethisia,med stuff!)
It's never dull.
I was taking 1800mgs of neurontin and I am down to about 900-1200mgs a day- this is a result of the nerve problem that I had the back surgery for! I don't take Lyrica, but I was on it before my surgery.I thought of getting off the neurontin and go on the lyrica for the fibro. I think I am going to hold off on going back on the MTX until I can get some answers and control of my UTIs ( so many initials!)
And the beat goes on!
Have a nice weekend.
Posted 9/9/2008 10:49 PM (GMT 0)
Just bumping this thread for some people over on the chron's board and for anyone that might be starting mtx.
Sj
Posted 9/20/2008 11:17 AM (GMT 0)
Good Morning Fellow MTX Boardies!

Hi, it's Kathy, the original poster of this subject. Just checking in after 7 months to say hi and to play catch up.

I'm doing GREAT on my combo of medications and have stuck with the weekly injections with no skips. I never thought I could stick myself even once and now my sharps container is getting full.

Last check up went fine. No changes to medications but a recommendation to do more stretching, flexibility, and strength training. And don't skip the hot shower afterwards. He stressed the hot water!

It's funny how WONDERFUL it feels to hurt for a reason and to have the soreness pass in a few days. So I'm chugging at the gym for the cardio and attending a core training class with a section of time set aside for flexibility/stretching. I'm in there with the twentysomething pretzel girls but the instructor always makes suggestions for modifying the routine for us vintage models.

If you're a fellow IBS, Colitis, or Chrons sufferer you might be interested to learn that MTX often has a positive effect on your condition. Gastro Guy and Rheumy speak with each other in my case and connect the dots in my treatment.

Yes, I've been that sick in the past to need that level of concern and continuity of care.

Today I'm so much better.

MTX has been a Godsend.

If you're just starting out please be in constant contact with your doctors, drink lots of water, do your exercises and HANG IN THERE.

Better days ahead!!! That's my prayer for you.

Enjoy your weekend.

Kathy
aka Rot Gut
Posted 9/21/2008 1:18 AM (GMT 0)
I'm still loving my mtx but it seems likely that it is working a bit too well. My GP blames the mtx for the never ending sinus infection. So I am off the mtx for at least a week while I take leviquin to try to kill the bugs.
Posted 9/26/2008 12:10 AM (GMT 0)
bump for ucwarrior
Posted 9/26/2008 10:26 PM (GMT 0)
The more I deal with my gp the more I love my Rhuemy. I have had this infection now for about 40 days-during that time I have been seen in my GPs office three times and an acute care center once. My GP seems to have no control over her staff as she does not get my messages, return my calls or respond to medication requests and it takes days to get an appointment. She also seems unaware of the effect that immune suppressent drugs have on the immune system and keeps prescribing antibiotics ten (or even 7 days at a time) which with the gaps between appointments means I am without meds 4 days at a time-hence the visit to acute care.
Anyway, last week she told me to skip mtx for a week, this week acute care told me to stay off the mtx until I was seen by my rhuemy. I called my rhuemy today even though I know she isn't in her office, to confirm that advice and let her know what is going on. Her nurse called me back with info from the doctor in half an hour. I am on prednisone for the sinus infection so rhuemy said yeah-no mtx until I see her on Oct 6th. I feel like I have been hit by a bus after just one missed dose but I started the pred yesterday so hopefully that will help.
Oops I just noticed that I am ranting-I miss my mtx.
Sj
Posted 10/25/2008 6:16 PM (GMT 0)

When I started Methotrexate, my rheumatologist assured me that it was what he would prescribe for his WIFE if she were diagnosed with RA.  I was so ready to put a brave face on things that when I started to cough and feel breathless, I thought these were just side effects I'd have to live with.   My joint pain did start to go away and I lost weight which I loved. Yes, I did lose some hair but the folic acid helped that.  Little did I know that I was ruining my lungs!

My advice to you is to stay on top of any unusual symptoms you develop and demand a CT scan of your lungs if you see ANY weird lung symptoms.  I just wasn't diligent enough about reporting problems to my rheumatologist.  I made my own appointment with the pulmonologist thinking I had asthma and I was there for 3 hours talking about bronchoscopy (which I had), closed lung biopsy (which I had), pulmonary rehabilitation and all sorts of alarming things that now don't seem so unusual.  So, keep a journal of your symptoms-if I had done that, I would have avoided much of the lung damage that methotrexate caused me.  My lungs are stable right now, but I have been referred to the transplant program at Emory b/c once you have pulmonary fibrosis, they don't know how it will progress.  Though there is no way to PROVE that the methotrexate caused the lung issues, my coughing and breathlessness went away AS SOON AS I STOPPED THE METHOTREXATE! 

Lest this scare you to death, my friend with psoriatic arthritis has been on Methotrexate for 2 years and has really not had problems with it other than weight loss and some hair loss which folic acid helped.

Good luck!

magsmom

Posted 11/3/2008 3:19 AM (GMT 0)
I lost a lot of hair initially but it seems to have stopped now, I just have thinner hair than I used to. It doesn't seem to grow as much either but it does grow. Been on mtx with humira but I'm on a lower dose now so maybe thats why I'm not losing any more hair. I feel like hair is the least of my worries...

Posted 12/5/2008 2:17 AM (GMT 0)
bump for new member
Posted 12/24/2008 11:44 AM (GMT 0)
Good Morning Board Members!

Hi, it's Kathy the original poster checking in.

So I'm almost at the one year mark with MTX. There's been a few ups and downs including one about a month ago when I checked in with my rheumatalogist who bumped my dosage to the 10 mark on the syringe and switched me to Lyrica.

Once again we've found the correct combination of medication to keep me feeling great. Yes, I can stay up with the younger set for the morning "boot camp" at my gym and have almost finished a virtual run to Key West (322 miles) over the last 3 months.

As we approach Christmas this year my wishes go out to you that you find the care you need as well as your pathway toward wellness. There are so many choices for you out there!

Stay active, love your families, and keep your smile in place.

Happy Holidays!

Kathy
Posted 6/5/2009 11:01 PM (GMT 0)

It seems no one has posted on this thread in a really long time, but this is the only forum I found that seems to have negative and positve info about this med so here it goes...

Here is my RA background:  I am 42 and was diagnosed with RA about a year ago and I started to see my rheumatologist shortly thereafter.  I was put on plaquenil 400mg daily and I think it has started to work, although it has taken a really long time.  I don't think my case is severe as I can still function and do not have any crippling episodes. I have joint pain mostly in my wrists and hands (along with carpel tunnel), ocasionally in my knees and occasionally in my feet.  I see my doc every 3-4 months with blood work.  I recently went to see her yesterday because for about three weeks my elbow has been killing me.  Sometimes I could barely move it or pick anything up with that arm but I worked through the pain (I lift and push heavy things all night long).  She took one look at it and said she could tell there was fluid buildup in the elbow and my knuckles on that same side were also very swollen.  The funny thing, it felt the best it had in about three weeks.  Anyway she wants to add methotrexate to my plaquenil.  She wants to start me off at 2 pills a week, but taken on two different days (which doesn't seem to be the norm after reading on it) with folic acid 1 mg everyday.  The side effects and everything I have read online have me completely freaked out!  I have read about major weight gain (I have been consistently losing weight and am happy about that).  I can't be sick and nauseated for even a day afterward so that has me scared.  I already have migraines, so more head pain isn't appealling to me.  I really like having hair and can't afford losing even a little bit as I was blessed with that annoying fine hair as it is.  And the main thing, it is chemo!!

So my major decision is whether to start it or not and see if I have any side effects.  The other is, do I really need it?  I can still function, even with flair ups.  They aren't pleasant, but they don't put me down and disable me.  I still move around good.  I can still go camping and ride motorcycles and such.  I can play with my kids, I can do work around the house and yard, and I work all night moving and lifting heavy items and am on my feet the entire night.  I won't lie, I have pain, but I think I have just learned to tolerate it and can't remember what it feels like to not have it.

My doc wants to make sure I don't get further damage to my joints so she is adding this medication.  She wrote me the script and told me to think it over and discuss it with the hubby.  We are both concerned.  I wonder if the plaquenil is enough to protect my joints.  The pain sucks, but the side effects of metho seem to outweigh everything else.  I am so confused and so scared!!

I would like to know what some of your opinions are regarding my situation.  I don't know any one else personally that has this disease, except for my mom and she doesn't treat it.  I am really leaning towards taking a pass on this, and continue on just the placquenil.

Thanks for any and all info in advance! Hopefully this thread isn't too old to get any info!

Cheryl

Edit:  My original blood work that caused me to be referred to rheumatology was:  ANA positive (30.0 IU/ml - normal being <7.5), but I believe my RA factor was negative.

Post Edited (petunia66) : 6/5/2009 5:38:09 PM (GMT-6)

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