Methotrexate experience

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junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 8/7/2010 5:50 PM (GMT -7)   
please bear with me.. my eyes are funky and having a hard time typing..

got the injection on friday at 2:30.. in my buttt.. only place nurse would do it.. that came after the dr sat me down and basically tried to talk me out of it. scared me.. made me take notes on what I was getting myself into ...i still went ahead...because what choice do i have. he did send me to the hospital for a chest xray, blood test, cdiff and liver panels.

I started getting tired about 30 minutes after shot..about an hour later it really hit me... I slept all last night and most of today.. some nausea.. very bad headache... muscle pain... and my diarrhea is still up at 15x a day , though probably no reaction to drug but still crohn's. my eyes are squinty.. like they are swollen.. they are bugging me. my kids said it looks like I am just really tired.. which i am .. but they feel swollen...weird.

I just want to sleep...and want the headache to go away. thankful I am not sicker to my stomach...

just wanted to share my experience... and if anyone knows anything about the eye thing... please let me know..and I am drinking lots of water..I took all of your advice...now just want to go back to bed...the fatigue sucks. but if it works... I will gladly take this over being in the bathroom and joint pain.

thanks to all of you ....
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
-----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009

Diagnosed with Crohn's March 2010- Mayo Confirmed May 2010
Back on Prednisone, Colestipol.Nexium, Propranolol, Vivelle patch
No longer on Imuran due to pancreatitis
Have taken Entocort, Bentyl, Flagyl, Lomidil, Pentasa
Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/7/2010 5:56 PM (GMT -7)   
Methotrexate always made my eyes feel weird, and sore too.

The fatigue and the headache etc sounds quite similar to my experience. I really didn't enjoy being on that medication, but I did appreciate the relief it provided from some of my symptoms.

Why was your doctor so against the drug?

Hang in there. Remember what I said: the first few doses are often harder than the others.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 8/7/2010 6:01 PM (GMT -7)   
ok.. did your eyes eventually even out? I have to admit I am scared now over the eyes...

My doctor never wanted me to use this.. he has never used this drug and wasn't comfortable so he researched it and told me that he understood the mayo wanted me to use it but these are the risks and what could happen to me... it was out of his comfort zone.

I am hanging.. darn it.. vision is really off..i want to give this a chance... i will give it a chance. just will sleep alot.

thanks Ivy.
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
-----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009

Diagnosed with Crohn's March 2010- Mayo Confirmed May 2010
Back on Prednisone, Colestipol.Nexium, Propranolol, Vivelle patch
No longer on Imuran due to pancreatitis
Have taken Entocort, Bentyl, Flagyl, Lomidil, Pentasa
Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/7/2010 6:05 PM (GMT -7)   
No, not really. I think I just got used to it eventually, and then noticed the difference once I got off the med. My eyes always felt sore and dry and gritty, from memory, and a bit more sensitive to light?

If you think your vision is being affected, though, that's different. What sort of alterations are you noticing?
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 8/7/2010 6:10 PM (GMT -7)   
How much folic acid are you taking?
The fatigue and headache are exactly what I experienced with my first few doses. Extra folic acid got rid of that entirely.

junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 8/7/2010 6:37 PM (GMT -7)   
My eyes feel swollen.. like the eyelids only... not the inner eye.. but they feel gritty too...dry.

dr told me to take 800 mg of folic acid every day...
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
-----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009

Diagnosed with Crohn's March 2010- Mayo Confirmed May 2010
Back on Prednisone, Colestipol.Nexium, Propranolol, Vivelle patch
No longer on Imuran due to pancreatitis
Have taken Entocort, Bentyl, Flagyl, Lomidil, Pentasa
Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.

Bammer
Regular Member


Date Joined Mar 2008
Total Posts : 381
   Posted 8/7/2010 10:13 PM (GMT -7)   

I have had a weird sensation in my eyes a few times but never made any connection to methotrexate. Kind of a twitching behind the eyeball and chalked it up to stress. No other symptoms.

800mg or even 8mg a day of folic acid does not sound right?


58 yr. old F dx. CD 07/07
Started weekly methotrexate injections 09/22/08.
Lap assisted sigmoidoscopy done May 11/2009

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/7/2010 11:17 PM (GMT -7)   
I've been thinking the same thing re the folic acid dose.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 8/8/2010 5:43 AM (GMT -7)   
junerainbow, Are you sure he didn't mean 800 mcg, not 800 mg?

junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 8/8/2010 6:24 AM (GMT -7)   
eyes were tired yesterday...actually the mayo said 1mg. when i talked with my dr he said it was overkill and to take two 400 mcgs.. so 800 mcgs.. sorry about that..

don't feel quite so tired today..eyes are still bugging me though..still have muscle pain...but tolerable
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
-----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009

Diagnosed with Crohn's March 2010- Mayo Confirmed May 2010
Back on Prednisone, Colestipol.Nexium, Propranolol, Vivelle patch
No longer on Imuran due to pancreatitis
Have taken Entocort, Bentyl, Flagyl, Lomidil, Pentasa
Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/8/2010 6:35 AM (GMT -7)   
Navy or ZenaWP are ones that I can think of who are currently on this med. I do know that I have heard over and over here at Healingwell that you just have to be patient with this med. You will have side effects, worse at first, until your body adjusts to it. I believe also you need to take the dose of Folic Acid that Mayo said to take with it. It is not overkill, it is needed with this med, because it depletes your Folic Acid. Patience June, I know its hard, but with this disease thats one thing you got to have. Everything is hurry up and wait. Sorry and hugs!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 8/8/2010 7:25 AM (GMT -7)   
Thanks Nanners... that is what I have heard as well.. I am definitely being patient with this..thanks for the hugs!!

I definitely feel like I am caught between feuding parties.. LOL.. the Mayo and my dr say they work together but when it comes down to it.. the egos get in the way...I will up my folic acid..
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
-----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009

Diagnosed with Crohn's March 2010- Mayo Confirmed May 2010
Back on Prednisone, Colestipol.Nexium, Propranolol, Vivelle patch
No longer on Imuran due to pancreatitis
Have taken Entocort, Bentyl, Flagyl, Lomidil, Pentasa
Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 8/8/2010 8:10 AM (GMT -7)   
Ok my doctor has my dose of folic acid at 3MG (which I think is 3000mg) a day for right now that changes due to how I am feeling and how my lab results look. I personally think Mayo knows what they are doing. I can usually tell before the lab test, due to how I feel and how much hair I am losing if my folic acid is within normal range.

about the eyes do you have allergies? Because before crohns I had no allergies and with crohns I am much more sensitive to anything like that. Also please think about using those flexiblegel packs that you put in the fidge (the freezer does not work for me<too cold too hard>). It might help with the head ache and eyes.

Yeah, it took me three months to see a difference.
Sorry you are feeling so crummie.
((((((((June)))))))

Take care,
Navy
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 8/8/2010 8:21 AM (GMT -7)   
Thanks Navy... I will up my dose to the 1mg.

I have allergies but this definitely feels different.. weird...they are not swollen today just feel gritty .. like they are made of sandpaper..and they feel sore. I will use the ice packs.. hadn't even thought of that. I was wondering if they are dry.. maybe wetting drops would work.

thanks so much.. it helps to be able to share the experience..this board is awesome..
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
-----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009

Diagnosed with Crohn's March 2010- Mayo Confirmed May 2010
Back on Prednisone, Colestipol.Nexium, Propranolol, Vivelle patch
No longer on Imuran due to pancreatitis
Have taken Entocort, Bentyl, Flagyl, Lomidil, Pentasa
Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 8/8/2010 8:31 AM (GMT -7)   
IDK, but it might be worth trying out. I do not know if this is the crohns or the MTX, but I feel like something dry's me out, like I have to take in more water, use a better quality of shampoo/conditioner (aveda damage remedy), and dove soap etc. When before I was always fighting the oil.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/8/2010 1:47 PM (GMT -7)   
Dry, sore, gritty, was pretty much how my eyes felt the whole time I was on mtx.

I was on 5mg a day of folic acid.

If it gets too hard, remember that it might be possible for you to lower the dose. I know that one of our members had a really terrible time on 25mg / week, but did a lot better when the dose was lowered to 15 or 10. The side-effects didn't go away, but they did become more manageable.

Sorry you're feeling so rotten.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 8/8/2010 2:22 PM (GMT -7)   
I did not have the eye issue. So everyone is different.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


stmprkb
Regular Member


Date Joined Jun 2010
Total Posts : 33
   Posted 8/11/2010 3:56 PM (GMT -7)   
I just started MTX injections this past Monday- thanks for this thread. No side effects... and no change in symptoms. I gave the shot to myself with Doc supervising. I will take it once a week at home, follow up in a month, blood work/etc.

I am on Folic Acid, rhuemie doubled what the GI was giving.

Kim in FL

riesasmom
Regular Member


Date Joined Dec 2009
Total Posts : 44
   Posted 8/11/2010 4:55 PM (GMT -7)   
Hi, my daughter took oral MTX for 9 months when first diagnosed and did well, then she began to throw up after taking it. So they swithed to injections, which was worst. Nausea and vomiting every time! Sometimes, she would throw up alot of blood. I even had her in councelling because the doc thought it was in her head and she was working herself up and making herself feel sick. After a few months of this, they wanted to put her on Remicade. That's when I said "Bye Bye" and found a new GI. I guess it works for some, but my daughter had a horrible experience with MTX. Make sure you take 1mg of Folic Acid and don't get pregnant, as it causes miscarraiges. Good Luck. Diana

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 8/11/2010 5:04 PM (GMT -7)   
My rhuemy writes a 1 mg (1000 mcg) folic acid script for everyone on Methotrexate. If you have side effects like I did it goes up.
I take 3 mgs. As soon as I started that-within three days-the side effects all went away.
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