Scared out of my mind about methotrexate....calm me down please.

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

bella3250
Regular Member


Date Joined Aug 2008
Total Posts : 351
   Posted 1/21/2010 9:55 AM (GMT -7)   
okay i'm going to my gi doc to be injected with metho. i'm terrified. i am so scared. please tell me everything will be okay? Anothe thing freaking me out is that i could only get the methotrexate with preservatives. For some reason there is a back order of the preservative free metho. anyone know anything about this. help! cry

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 1/21/2010 10:13 AM (GMT -7)   
Not sure what to say to help you feel good about it. I am about to start it (today?) too. I was on it one other time for only 4 weeks. (My current doc feels that was not long enough to know if it will help.) Anyway, the last time I was starting MTX I felt like you. I was so upset and nervous. I had myself worked into a complete state of anxiety. Once I started taking it I had no side effects (visible). That helped my nerves. Also, maybe it would help to know that they monitor your blood as you take it. This can help you to remember that if anything starts to go off-kilter from the MTX, they can catch it in a blood test and get you off safely.

On the flip side, how about dreaming of this stuff really helping - maybe putting you into remission!? Wouldn't that be great?

Hang in there. YOu're not alone...
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Started Cimzia first dose 2/10/09. Dx Osteoporosis 10/08 started Forteo 1/27/09


Octobergirl
Regular Member


Date Joined Aug 2009
Total Posts : 377
   Posted 1/21/2010 10:42 AM (GMT -7)   
Hey Bella,

I'm sorry you're so anxious about the metho. I started Reimcade at the same time as the metho, so I was more worried about Remicade than Metho. Meds can be scary, any fear of the unknown, but like sr5599 said, maybe this will be the drug that puts you into remission.

I self-inject, and previous to this, I had never given myself any shots. I was freaked out by the idea, but the needle is so small it hardly hurts. The only side effect I noticed was after about 3 months I had a bit of thinning hair, but not much. It stopped thinning about a month ago, but I'm also out of remission now so I'm wondering if my metho was too old and isn't working now. (The pharmacist was confused and gave me three full vials and said I couldn't reuse the vials and had to throw them away after each use. The doctor told me otherwise though, but I don't know the shelf life of methotrexate.)

Sorry, I have no info on the preservative free. I didn't even hear of it until you mentioned it.

But it originally helped put me in remission, so hope it does the same for you. Good luck, it won't be as bad as you're making it out to be. :)

bella3250
Regular Member


Date Joined Aug 2008
Total Posts : 351
   Posted 1/21/2010 11:35 AM (GMT -7)   
Thank you so much for your input. sr5599: thank you so much for your last line of "hang i there, you
are not alone." That literally brought me to tears. As we all know to well, sometimes having this disease makes you feel alone. Thank you truly for reminding me that I am not. And to everyone who has responded. I am grateful that you have taken the time out of your lives to answer my post. I'm off to the doctor now. Ill let you know how it went. To be continued....

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 1/21/2010 1:00 PM (GMT -7)   
The first time I had MTX, about 3 years ago, I had my boyfriend at the time do the injection. (We did it in the doc's office.) I was so nervous that I actually made myself light-headed and nauseous. (I knew it was mental as it hit was before a reaction to the med would!) Anyway, we got in a huge fight on the way home - he was saying "Well how do you think *I* feel about injecting you?" As if it were harder on him than me! Anyway, that was the end of that! ;-)

Since then I've learned to inject myself. I do daily sub-q shots for my osteoporosis. The IM shot for MTX was pretty easy once I got over the fear. It was the easiest shot I've given myself (including MTX, Forteo for bones and Humira). I refuse to do my own Cimzia shots because it's so thick and there are two of them. Maybe I'll get over that one day too, but ...

we each have our thresholds. Just see how you do with the shot first and on the med. Once you decide if you're going to stay ON the MTX, you can then worry about learning to do the shots yourself. Maybe just take one thing at a time?

Hope it went well!
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Started Cimzia first dose 2/10/09. Dx Osteoporosis 10/08 started Forteo 1/27/09


lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 1/21/2010 3:59 PM (GMT -7)   
I hadn't heard of preservative free methotrexate either, don't think mine is. This is my 8th year on methotrexate, been a wonderful drug for me. I was anxious before I started the injections but if you have proper injection training it should be fine. It can take a bit of nerve making yourself do it but I just remind myself its only once a week and its over in a few seconds :-)
 
 


bella3250
Regular Member


Date Joined Aug 2008
Total Posts : 351
   Posted 1/21/2010 5:54 PM (GMT -7)   
Thank you for all your advice truly. I had my injection today. GI doc did it. It was not bad at all. He gave me half the dose to see how i would react. Well about 2 hours later i got exrememly tired and fell asleep for two hours... then the nausea set in. I am so nauseated and I have nothing to take for it. and that was only half the dose. What's gonna happen when I get the full dose next week?

lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 1/21/2010 6:01 PM (GMT -7)   
The side-effects are usually more extreme for at least the first month as your body gets used to it. As for the nausea thats why its better to do the injection just before you go to sleep at night so you sleep through the worst of the side-effects. I'm usually a little zombie-ish the following morning but it soon passes. I rarely get nausea now and if I do I take Stemetil/prochlorperazine (tried a few anti-nausea meds and this one seems to be the best I could find its often used in chemo patients). Make sure your well hydrated before your next injection and stay away from strong smells after as I find that can really aggravate nausea.
 
 


bella3250
Regular Member


Date Joined Aug 2008
Total Posts : 351
   Posted 1/22/2010 8:20 AM (GMT -7)   
well after the nausea and sleepiness wore off i started to run a low grade fever and got really achy after my first methotrexate injection. i felt like i had the flu. wutz up with that. is that normal?

karasmommy
Veteran Member


Date Joined Mar 2005
Total Posts : 589
   Posted 1/22/2010 10:00 AM (GMT -7)   
I will agree it is scary to start, I have been on MTX now for over 7 months and I will admit that I didn't like the thought of injecting at first, but now it is like 2nd nature. I also LOVE the results that I have gotten with it - no joint pain, no flares, etc.

I DO have the Preservative Free MTX - I couldn't get the PF version from my local pharmacy or from my RX coverage Mail Order - they sent me to a Specialty Pharmacy to get it. I have to say that for my own personal choice I really like the PF version over the regular, but then again I also have a lot of problems with generic/fillers in meds.

When I first started using the Specialty Pharmacy the PF version was out of stock an I had to wait about 3 weeks to get it, but now I never have a problem getting my monthly order of.

At first taking the MTX was a little rough - I was nauseated, got headaches from it that lasted a few days, just general feeling of exhaustion.

My Rheumy put me on a RX of Folic Acid which has been wonderful at keeping those side effects away, also being extremely hydrated the day of your shot and the day after makes a HUGE difference in how it moves through your body.

I will also admit that I had less side effects with the Preservative Free version, but then again I am extremely sensitive to those types of things.


Oh yes - the specialty Pharmacy that I use is called Curascript - I LOVE them, they are a great pharmacy to work with and they are wonderful with their customer service.
Ellen
Diagnosed with Lupus - April 2002
Diagnosed with Crohn's Disease (and all the lovely things that come with it) - January 2003 (problems since early 1990)
Fibromyalgia 2005 
Normal Meds:  Ambian 10mg, Flexeril 10mg as needed, Plaquenil 400mg, MTX 25mg Injection weekly, 1000mg Canasa Supp. as needed, Probiotics


mbw1103
Regular Member


Date Joined Apr 2009
Total Posts : 71
   Posted 1/22/2010 7:40 PM (GMT -7)   
Bella - I had the same flu-like reaction after my first shot.  I had been on oral mtx for 2.5 years and just started injections 2 weeks ago.  After the first injection I could have sworn I was coming down with something, but woke up fine the next morning.  After the 2nd injection I didn't have any issues....I wrote it off as a fluke, but after your post I'm wondering if it's the body adjusting to the med?
 
Melissa
34 - Diagnosed with Crohn's in Nov. '05
Current Meds: Apriso, Canasa, Methotrexate, Pamine Forte, Aciphex, Domperidone, Folic Acid, Restasis, Plaquenil, Doxepin, Xyzal, Zyrtec, Zantac, VSL#3, Calcium, Vitamin D, Centrum, Digestive Enzymes, Thera-tears Omega 3 Supplement, Co-Enzyme Q10
Gluten free since Aug. '03


bella3250
Regular Member


Date Joined Aug 2008
Total Posts : 351
   Posted 1/22/2010 8:27 PM (GMT -7)   
First day after my metho injection and yesterday was horrible.  Fell asleep for a few hours afterwards and was extremely neauseated.  Then ran a low grade fever and complete acheyness.  Now its 10:30 at night the following day and I am still neaseated and feel like I have a jackhammer in my head all day long.  This frigging sucks.  I only got half the dose also so what does that mean?  Next thursday when I go back for the full dose what the hell is gonna happen to me?  Now i am really and truly freaked out.  Wutz up with this?  I hope this doesn't continue very long.  I do not want to deal with this.  You know it's bad enough that we have to wake up every morning with the undesirable effects of this disease but then the medicine that is supposed to make up feel better makes us feel even worse than we did originally.  Something's gotta give. 

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 1/22/2010 9:00 PM (GMT -7)   
There are people on this forum who have had a very hard time with the methotrexate and have put up with it for a very long time - months, years - because there was no other alternative . For some of them, methotrexate provided some relief with the Crohn's and rheumie symptoms, and the benefits of being on the drug outweighed the hardship of the side-effects, but the side-effects were still pretty severe. Others had to stay on the drug because there was nothing else available to them.

I think that, ultimately, you are going to have to make a choice. You are going to have to decide whether the side effects are worth putting up with, or whether you're going to stop the drug and live with the consequences.

In short, do you have an alternative? Are you able to try a different drug like Imuran or Remicade instead? Do you only need to stay on methotrexate for 3-4 months to qualify for a higher level drug e.g. Humira or Rem? Is methotrexate the very last medication available to you, because you've tried every other medication and failed / had no response? If so, would you be prepared to put up with these side effects in the hope that they will either:
a) diminish with time (which sometimes happens)
b) improve your Crohn's & rheum symptoms so much that the horrible side-effects are worthwhile?

Even if you do feel backed into a corner right now, you still have some choice in the matter. Ultimately, you are the person who is choosing to stay on the drug or not: you can always choose to stop it and get sicker, though that may not be a pleasant or desireable option for you. It might help you to set a deadline, either personally or in consultation with your doctor, that you will only put up with the side-effects for x weeks, at which point you insist that you and your doc talk and then start actively pursuing other treatment options. If you have this deadline in mind, it might make things easier for you, as you know that this isn't going to be indefinite.

Another thing that might help is to stay on a half-dose of the drug indefinitely. It may well be that you can't tolerate a higher dose: that happens to many people, with various medications.

Hang in there. The first couple of weeks is often the roughest. Remember, you've been injected with a poison: it's reasonable to expect that you're going to feel somewhat poisoned afterwards.

Ivy.
Co-Moderator Crohn's Forum.

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


RedOctober
New Member


Date Joined Mar 2007
Total Posts : 14
   Posted 1/27/2010 10:49 AM (GMT -7)   

I've been on methotrexate for about a month and a half - you may want to wait to see if the side effects decrease with time. I was scared to death of my first 2 doses, and I was a little sleepy and nauseous the next day. I haven't seen any problems at all with my last few doses, and I think it's really helping the Crohn's.

I snack on crystallized ginger and ginger tea if I'm nauseous, which helps.

Best of luck!

 


KnittingMom
Regular Member


Date Joined Nov 2009
Total Posts : 26
   Posted 1/28/2010 5:28 PM (GMT -7)   
"First day after my metho injection and yesterday was horrible.  Fell asleep for a few hours afterwards and was extremely neauseated.  Then ran a low grade fever and complete acheyness.  Now its 10:30 at night the following day and I am still neaseated and feel like I have a jackhammer in my head all day long.  This frigging sucks."
 
Talk to your pharmacist or doctor about taking folic acid.  I was told that taking it really helps with the nasty side effects of metho injections.  I started on it right away and for the first month I had periods of mild just not feeling good nothing too serious.
51 year old woman, married 30 years.  27 yr old son married to a wonderful woman.  7 year old grandson with new baby due the end of June!  24 yr old daughter living with her fantastic boyfriend.
Diagnosed with Crohn's in 1990 following resection surgery.  Put on no meds on discharge.
5 years ago put on salofalk.  Early 2009 taken off salofalk put on entocort 3 tab/day, mezavant 2 tabs/2 x's day, methotrexate inj once a week.  Folic, Vit D, calcium, vit c, multi vit, tylenol arthritis.
Will be taken off methotrexate after next dialation (scheduled for asap) and put on IV drugs, just not sure which one yet.
 


bella3250
Regular Member


Date Joined Aug 2008
Total Posts : 351
   Posted 1/28/2010 5:58 PM (GMT -7)   
Thank you everyone for replying to my post. I had my second injection of the methotrexate today and it actually is not as bad as last week. Still very tired and somewhat nauseated but no fever and acheyness. Ivy I have been on everything and nothing works. Metho is my last resort. I'm going to stick with it and hopefully my crohns's gets better. I got 3/4 of the dose today. The only difference with this injection is that i got an injection site reaction which is no biggie. I hope this drug works and I will tough this out. Thank you everyone.

Brian84
Regular Member


Date Joined Mar 2005
Total Posts : 452
   Posted 1/28/2010 8:00 PM (GMT -7)   
Bella, I am in the same boat as you. This is my last resort before they want to take my colon out. I am now on 60mg of prednisone and have had my 4th metho injection last tuesday. I didn't actually notice an improvement until this last one. Before I kinda had some side affects like the tiredness and such. But this last one I must have gotten it in a weird spot because when I pulled the needle out a lot of blood came out too. I got extremely sleepy and I was the same he next morning and throughout some of the day. I have to say I think that one worked because I have been feeling a lot better since yesterday. I haven't really had any "emergency" trips to the bathroom.
 

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 1/28/2010 10:06 PM (GMT -7)   
Brian - are you doing the shots yourself? The doc, nurses and pharmacist all told me to be sure to pull the plunger on the syringe back a little to make sure there's no blood. That way you know you're in muscle not hitting a vein of sorts. Not that I'm any sort of expert... Just relaying what they told me to be careful of.

I took it once before for 4 weeks and didn't notice a difference. This time I plan to commit for 3 months to see what happens. Like you, bella3250, I've failed every other drug on the market for Crohn's. I don't know why I won't just allow my surgeon to do a temp ostomy, but for whatever I am not ready.
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia, MTX . Dx Osteoporosis 10/08 started Forteo 1/27/09


bella3250
Regular Member


Date Joined Aug 2008
Total Posts : 351
   Posted 1/29/2010 1:35 PM (GMT -7)   
Brian-I am afraid to give myself injections. I've been going to the doctor once a week for my shot which kinda sucks because he's 35 min away. I just can't bring myself to do it. This was only my second injection and the first one really sucked as far as side effects. Yesterday I had my second one and I was okay yesterday just a little sleepy. Today I am running low grade fever again and tired. Do you take preservative free methotrexate. My pharmacy gave me the one with preservative because they couldn't find any preservative free. The company that supplies it has in on back order.

Sr5599-I've actually had a temp ileostomy. My colorectal surgeon removed a foot of my small intestine. He removed my terminal ileum, my ileocecal valve (sp)? and my appendix although my appendix never did anything to me. Lol. Anyway I'm going to give this drug time to work because I have nothing left to try. I've tried it all. This is my last hope.

Brian84
Regular Member


Date Joined Mar 2005
Total Posts : 452
   Posted 1/29/2010 8:11 PM (GMT -7)   
sr5599
Yeah my nurse taught me to pull the syringe back a little bit so that I can tell if I am hitting a vain or not. Unfortunately I think I am doing something wrong. Maybe not pulling back hard enough cause I can't get the plunger to move.

Bella-Did you ask your nurse/doctor if you could do it yourself? I know it's different for everyone, but maybe if they have you do it you can get used to doing it at home. It will at least save you the trip. It gets easier every time.
And no I do not have preservtive free? Is their a difference??

bella3250
Regular Member


Date Joined Aug 2008
Total Posts : 351
   Posted 1/31/2010 1:45 PM (GMT -7)   
Brian-  I do not want to inject myself.  I'd rather have the doc do it.  I'm going to have him do it.  I have a phobia of injecting myself.
New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 10, 2016 12:04 AM (GMT -7)
There are a total of 2,735,767 posts in 301,329 threads.
View Active Threads


Who's Online
This forum has 151433 registered members. Please welcome our newest member, teenujohn.
188 Guest(s), 5 Registered Member(s) are currently online.  Details
Georgia Hunter, msOuchie, Job_the_Phoenix, holo100, julymorning


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