love/hate relationship with methotrexate

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

cbk
Regular Member


Date Joined Apr 2007
Total Posts : 134
   Posted 1/2/2008 10:56 AM (GMT -7)   
So I began MTX about 7 weeks ago and it's working already. No flare ups while on it and that little gnawing pain in my lower right side (which is an internal fistula) is gone. GREAT!
 
But..
 
I really am worried about the possible damage that can be done to my liver with this medicine. I also hate that I can't drink anymore and that I might have to limit my sun exposure. No booze? No sun?
 
 
I shouldn't be complaining becaue it is working and I'm pain free, but I'm tired of the medicines and not necessarily the Crohn's taking over my life.
 
I'm eagerly anticipating the next biologic the FDA approves b/c I cannot take any anti-TNFs. Hopefully, I will only be using MTX for a short amount of time. How many of you have been on it for more than 2 years or so?

potatoqwn
Regular Member


Date Joined Jan 2006
Total Posts : 355
   Posted 1/2/2008 11:05 AM (GMT -7)   
I was on it twice. The first time I got very weak and sick. It was like I had the flu. I got fevers and could barely get up off the couch. I stopped it. Then a couple of years later, a doctor covering for my doctor put me on it again. I was naturally reluctant. I agreed finally and began it in tiny doses. I gradually got up to the normal dosage without the former side effects. It did help me, but what I hated the most was that I had lots of hair loss-not good for anyone, but worse for a woman. This could have been from other meds that I was on at the time but I decided to blame the MTX because I had problems with it before. I was on it for about 8 months before stopping. I think some here have been on it for longer and they will come along shortly.

cbk
Regular Member


Date Joined Apr 2007
Total Posts : 134
   Posted 1/2/2008 11:09 AM (GMT -7)   
How much were you on that you experienced hair loss? I'm taking folic acid supplements and hope that will prevent it somewhat. Thanks

potatoqwn
Regular Member


Date Joined Jan 2006
Total Posts : 355
   Posted 1/2/2008 11:14 AM (GMT -7)   
You know, I don't remember now. As I said, I had to gradually increase up to the normal dosage due the the previous side effects. So, I was finally on a normal dosage, whatever that was. I never took the folic acid supplements. I hope they help. Good luck.

angelang40
Regular Member


Date Joined Sep 2007
Total Posts : 160
   Posted 1/2/2008 12:20 PM (GMT -7)   
IVE BEEN ON METHOTREXATE FOR A YEAR NOW BUT IVE HAD A FEW BREAKS INBETWEEN DUE TO COLD FLUS AND SWOLLEN GLANDS IT IS AGREEING WITH ME ITS JUST THE INCONVENIENCE OF WEEKLY VISITS TO THE HOSPITAL EVERY FRIDAY ITS MAKING ME REALLY DEPRESSED AND IM HAVING PROBLEMS WITH THE WARD BECAUSE I COMPLAINED TO THE SISTER!IT WAS DISCUSSED DURING MY LAST CONSULTATION APPOINTMENT IF I COULD POSSIBLY TRY THE ORAL METHO  I JUST CANT TOLERATE ANYMORE VISITS TO THE HOSPITAL!IM CRACKING UP LITERALLY!!!!!!!!HOPEFULLY TOMORROW ILL BE ABLE TO ARRANGE A WARD VISIT WITH MY CONSULTANT TO DISCUSS ALL THIS ALSO WITH RECEIVING THEW METHO WEEKLY I DONT HAVE A LIFE AND I NEVER SEE MY PARTNER HE ALWAYS HAS TO TRAVEL UP TO ABERDEEN TO SEE ME. sad

cbk
Regular Member


Date Joined Apr 2007
Total Posts : 134
   Posted 1/2/2008 1:12 PM (GMT -7)   
i do the injections myself...ask them to teach you how to do it. then the pharmacy can fill the perscription and you can do it at your own convenience.

angelang40
Regular Member


Date Joined Sep 2007
Total Posts : 160
   Posted 1/2/2008 5:36 PM (GMT -7)   
cb its a different procedure here in the uk i have asked pharmacy if i could self medicate and there reply was no because its a toxic drug and it has to be administered in an clinical enviroment why god only knows now do you see why im so stressed out im hoping to see my consultant up on the ward to discuss all this i know for sure i cant tolerate seeing anymore of that ward for the sake of my own sanity trying the oral metho is not an option anymore!i know we all have crohns on this forum but we still have a life outside this chronic disease!
is there anyone on this site apart from me self medicate metho in the uk?????? please!!!!!!!!! say yes lol

cbk
Regular Member


Date Joined Apr 2007
Total Posts : 134
   Posted 1/2/2008 7:05 PM (GMT -7)   
angelang-

1) the pharmacy might not know if you can do it yourself, because, after all, it's just the pharmacy. if they won't fill the prescription for you because they are not authorized to distribute a chemotherapy agent, that would be a different story. also, your doctor and/or clinic might not be authorized to teach you to do it. do you go get treatment at a research university?

2)it is a bit surprising to me that the u.k., a country which is extremely progressive in their medical research and development, would have restrictions on self-administiring methotrexate. ask higher up than a pharmacy. if it is the case, it might have something to do with the insurance. when i studied abroad in germany, one gastro was able to prescribe me remicade but not imuran, and vice versa. this might be red tape from socialized medicine..or not.

hang in there. receiving mtx once a week (which should only take a few minutes anyways) is really not that bad when compared to people who receive dialysis which is 3 times a week and for several hours at a time.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 1/2/2008 7:44 PM (GMT -7)   
Angelang, I'm in Australia and it's the same for me: a doctor or specially trained (not regular) nurse has to do the injections. And they do the whole chemotherapy drill - special gowns and goggles, purple gloves and sharps bucket, the works.

I was able to arrange for the district nurse to do mine, to save the hassle of going out to yet another appointment each week. Is it possible that the RDNS might be able to do the same for you?

I.
Co-Moderator Crohn's Forum.


lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 1/3/2008 6:04 AM (GMT -7)   
Ok, I'm from the UK and have been on methotrexate over 5 years, 25mg in tablet form once a week (which is considered almost too high an oral dose). I have always gotten my tablets from the pharmacy and taken them myself at home, and every pharmacy I've ever been to has had it and thats in at least 3 different towns/cities over the UK, I wouldn't have thought that the injections could be that much more toxic then the pills? Maybe you can get them from the hospital pharmacy? I'm not sure how big the difference between oral and injected methotrexate is but anywho this is what i've experienced on it
 
As for the liver damage, for the first 6 months at least you should be having a bloodtest every 2 weeks, this checks among with loads of other things your liver function and things like your inflammation levels (CRP) to make sure its working and not damaging your body. After about 6 months you then only have to have the bloodtest once a month and if everything is stable after a year then 2 monthly. Now I'm at uni my doctors are happy for me to have them about every 3 months when I'm back home as everything has been OK for such a long time.
 
One other thing is I drink on methotrexate, and obviously as you can imagine the sort of drinking we British students do is phenomenal. I originally thought that I couldn't drink on methotrexate until one day before my 16th birthday I was at my GI's office and threw a wobbler (was coming off steroids and extremely emotional and whiney lol) and said something along the lines of "and I can't even have a drink on my birthday!!" to which my GI told me it wouldn't do any harm to have a couple, he was just very concerned about me leading a normal life etc. and said that as long as my liver function did not deteriorate then it was fine to drink (obviously he meant in moderation lol). And obviously I didn't go out and get drunk straight away (not that I'm approving getting drunk!) I built it up gradually and now I probably drink the same or more as other people I know (in other words too much) and my liver function is still OK. The thing is to test yourself and build it up slowly if you want to drink, and don't drink for 24hours after you've taken methotrexate as your liver already has enough toxins to deal with without you bathing it in alcohol, this I find just makes you be sick and if you do stomach it will probably have the worst hangover ever the next day.
 
Sunbathing, I'm a fair blonde but have done several beach holidays since being on it but usual sun safety should apply anyway but I have found I'm no more sensitive to the sun then before.
My hair did thin out a fair bit to begin with but its OK now still quite fine but doesn't fall out anymore.
 
Everyone is different of course but if you want to drink and stuff just be sensible and make sure you have regular bloodtesting to make sure you're not damaging your body, the last thing you'd want would be liver damage or anything as well as Crohn's! 
20 yr old female. Diagnosed with Crohn's Disease 2002
Crohn's arthritis in fingers, wrists, jaw and sacroiliitis
4 1/2 years remission with methotrexate and occasional infliximab!
 


angelang40
Regular Member


Date Joined Sep 2007
Total Posts : 160
   Posted 1/3/2008 8:57 AM (GMT -7)   
thanks for your input i did talk to pharmacy and they told me we are not authorised to self medicate metho never went into detail the reason why i know having metho once a week is not to bad compared to other illnesses and the treatment you have to receive but if your being messed about like i am then it begings to get you down and i already suffer from depression im tired of it all i call the ward to see if my methos up sometimes it is sometimes it isnt!sometimes its not in the fridge and in the cupboard and the nurses dont notice this ive went up many a time they have told me its been there when infact it hasnt i have to wait hours just to get a blood test wait a few hrs for results then return again.I arranged to have my meth on a friday because its convenient for me they are now asking me to change my days because the ward is so busy i dont think they realise we still have a life and to top it off my partner lives 3 hours away from me because i am shackled to a hospital every friday we very rarely see each other despite being with each other for over 4 years!i was on oral before but im 99% sure i was relapsing at the time so i was taken off it its the inconvenience of it all!its not an option now i know i have to do whats best for my health all this hospitals and doctors gets me so stressed out but what can you do we dont have a choice!when i am given my meth the nurses only wear gloves no aprons or goggles.i complained during my last consultation appointment about this ward it does not matter what time you appear its never a good time every hospital ward is busy if it werent it would be closed down when i aired my greivances the doctor was going to call me back to see if i could have my meth and bloods done in another ward that was almost 6 weeks ago.

mrsrose
New Member


Date Joined Feb 2007
Total Posts : 3
   Posted 1/3/2008 1:07 PM (GMT -7)   

I'm so sorry that you're having such a bad time - it sounds as if its all overwhelming you at the moment and I really feel for you.

I live in Portsmouth and self inject Methotrexate.  I get eight weeks supply at a time from the hospital pharmacy.  Maybe some health authorities allow it and some don't.  Couldn't you go into your consultant's outpatients department and get it sorted by the nurses there?  It might be a bit less hectic than a ward.  

I really do wish you well.  xxx


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 1/3/2008 1:23 PM (GMT -7)   

Just an FYI, Alcohol significantly increases the risk for liver damage while taking methotrexate, so alcohol intake should be eliminated or minimized to no more than two drinks per month.

Hope that helps........................

Kitt


 
Co-Moderator Anxiety ~ Panic Disorders
Co-Moderator Crohn's Disease Forum
*~* Not a mental health professional at all *~*
Dx: Anxiety/Panic, Depression, GERD, Osteoarthritis
*Wife of a Crohnie*
******www.healingwell.com/donate***
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~
 


cbk
Regular Member


Date Joined Apr 2007
Total Posts : 134
   Posted 1/3/2008 5:22 PM (GMT -7)   
2 a month is a bit restrictive, perhaps if i were a 300 pound male in his mid 40s i'd be singing a different tune. i was told my doctor that i could technically have just one drink per day. also, i was told psoriasis patients, ironically not crohn's patients, are more likely to develop liver damage.
New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, December 08, 2016 10:54 PM (GMT -7)
There are a total of 2,735,177 posts in 301,280 threads.
View Active Threads


Who's Online
This forum has 151384 registered members. Please welcome our newest member, Effieadler009.
240 Guest(s), 4 Registered Member(s) are currently online.  Details
bluelyme, 0311, NM12, Atomium7


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer