Mtx injection update and dr issues

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junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 8/15/2010 9:08 AM (GMT -7)   
Had my second injection on friday... wasn't as sleepy this time. This weekend I have been struggling again with the eyes, calf pain and this terrible headache... I feel groggy but not like last weekend. No change in bathroom trips ...and having increased cramping..feel like I have the flu.. very cold and chilled.. and sweats...

The dr insists on seeing me after the injection..tells me again how uncomfortable he is with this drug. I told him that I am having issues with sweating and still going way to much to the bathroom...he just ran a cdiff ( which he always does, sorta annoying) he wonders if he should run another one... I told him again that I have been sick since december with the same diarrhea and that I had only started getting better with the imuran ( down to 3x) but after the pancreatitis and the move to entocort , I am back up to the 9-15x daily. He keeps telling me that my crohn's is not bad enough for me to go that much. Now he thinks I have IBS with the crohn's and writes me a rx for levbid.

He also tells me that if I don't get better within the next two months, he is going to try and convince me to go to Remicade, giving up MTX altogether. I can't afford remicade and don't want to give up MTX . I know it has to be my decision and I guess I am just getting more and more confused. He wants me off the prednisone now which I understand.. I hate what its doing to me as well.. apparently my blood sugar is up, I am sweating all the time and feel awful. He tells me that if he starts Remicade I would feel better within a week. He has patients who have reported that fast of a turnaround.

I have been sick since December...and I know I have to be patient... again I understand I have crohn's... I just want to be able to leave the house, go on a date with the hubby... this urgent running to the bathroom all day is upsetting... the joint pain is really bad..and now I am beyond confused.. somewhat feel badgered... just don't know what to do . The prednisone is not working to control anything..

I am limited to doctors because I have seen most of them and the next ones to see are over an hour and half away..
I don't know.. I just don't know..sorry ... I just had to talk to someone...
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
Methotrexate injection, Prednisone, Colestipol.Nexium, Propranolol, Vivelle patch

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/15/2010 9:35 AM (GMT -7)   
Well I think you really need to give the MTX a chance. You have only had 2 shots so far, and I really don't think its been long enough yet. I would give the Levbid a chance and see if it will help with the Crohns cramps. Sometimes when I use the cramp meds, they help to slow the d down some too.

Maybe after a few months if you continue to not see improvement, then I think maybe giving Remicade or Humira a chance might not be a bad idea. Remicade has a program that will provide help for the costs, you might want to check into that. I actually think there is a post on one of the first pages of the forum about this program.

I hope you get feeling better soon.

Hugs
Gail*Nanners*
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 8/15/2010 10:17 AM (GMT -7)   
Thanks Nanners.. I think the dr wants me to fail on it so he can put me on remicade...I also want to give it a chance.. I just wish the D would slow down...I will give the levbid a chance... thank 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
Methotrexate injection, Prednisone, Colestipol.Nexium, Propranolol, Vivelle patch

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/15/2010 2:05 PM (GMT -7)   
Two months? They say it can take three for the mtx to work. That's odd reasoning from your doctor: did he explain it more?
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 8/15/2010 3:53 PM (GMT -7)   
No he didn't Ivy. He wants me on remicade.. he never agreed with the mayo on this one.. I think its his way of getting me off of it.
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
Methotrexate injection, Prednisone, Colestipol.Nexium, Propranolol, Vivelle patch

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/15/2010 4:11 PM (GMT -7)   
Can you ring the Mayo and ask their advice?

This is like being a child in a home with squabbling parents. The doctors are in charge; it's THEIR job to sort out your treatment. You shouldn't be stuck in the middle, trying to work out what's the right thing to do, and trying to pacify your own doctor. What you need is the certainty of a treatment plan. That's the doctors' responsibility, not yours. They need to work it out, frankly, and keep you out of their territorial & ideological squabbles.

Ivy, who has been there too.
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 8/15/2010 4:18 PM (GMT -7)   
Ivy.. you said it perfectly...squabbling parents mixed with way too much ego... it is time for another call to the mayo.. you are right..

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
Methotrexate injection, Prednisone, Colestipol.Nexium, Propranolol, Vivelle patch

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/15/2010 4:24 PM (GMT -7)   
And really, making you terrified about a drug that the Mayo has put you on is simply NOT acceptable. It's bad bedside manner, if you ask me.
Co-Moderator Crohn's Forum.

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

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/15/2010 4:24 PM (GMT -7)   
(Sorry, I'm really cranky on your behalf).

I hope the Mayo can help.
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 8/15/2010 4:28 PM (GMT -7)   
I agree... he is making me uncomfortable instead of just being supportive...
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
Methotrexate injection, Prednisone, Colestipol.Nexium, Propranolol, Vivelle patch

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 8/15/2010 4:51 PM (GMT -7)   
June do you want me to go yell at your doctor for you?
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…

Bammer
Regular Member


Date Joined Mar 2008
Total Posts : 381
   Posted 8/15/2010 5:53 PM (GMT -7)   
Just wondering if the sweating has anything to do with the Prednisone you are on? I have been on MTX injections for almost two years with no side efects. The only time I ever had a problem with sweating was when I was on a short burst of Prednisone when first diagnosed.

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

junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 8/15/2010 6:53 PM (GMT -7)   
Mmmnavy.... you made me laugh ...

Bammer.. yes, he definitely thinks the prednisone is making me sweat...I am having side effects from the MTX though.. but it didn't seem as severe this weekend...just the eye thing and muscle pain and this terrible headache..fatigue was minimal but I did listen to you guys and made sure my dose of folic acid was the 1mg.
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
Methotrexate injection, Prednisone, Colestipol.Nexium, Propranolol, Vivelle patch

karasmommy
Veteran Member


Date Joined Mar 2005
Total Posts : 589
   Posted 8/16/2010 9:26 AM (GMT -7)   
Junerainbow,

When I first started MTX I got horrible headaches for a few days after each injection.

As my body adjusted to it they stopped. I also take Folic Acid to help with the side effects - MTX depletes your bodies stores of Folic Acid. IT really does help with those side effects (headaches, nausea and tiredness.)

Also it took me almost 6 weeks of MTX to feel that it was really helping me. Also it felt like the first 3x I took the injection the day after I ran to the bathroom more than normal - my GI told me it can happen this way, but give your body time to adjust and you will see the results. :)
Crohn's and Lupus SLE

junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 8/16/2010 9:47 AM (GMT -7)   
Thank you Karasmommy...that is helpful....I would be lost without you guys....
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
Methotrexate injection, Prednisone, Colestipol.Nexium, Propranolol, Vivelle patch
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