Posted 9/4/2009 2:55 PM (GMT 0)
Hello my names Chris. And Ive been taking Humira and Methotrexate for about a year and a half now. And I was taking methotrexate alone for about another 9 months prior to that. And I havent had a major flare since really. And I have pretty severe Crohns disease, 5 major resections, 23 outpatient surgeries and probably a dozen ER visists a year on average, and admitteda bout 4 times a year on average sometimes much more though. so I have it pretty bad, but I really havent had a major flare since really. I have felt bad a few times and been admitted but its been a really good year and a half for me. Now at my hospital Ive been so many times for so long that I know most of the drs and they know me by name and all, most of them and the nurses whether in the ER, on the floors after being admitted or even the x-ray techs will be like oh chris how have you been havent seen you in a while guess thats a good thing. So it really has been better since being on both. Some people, lots of people actually dont think you should or are scared to take 2, but its actually becoming more and more common. For me I found that the methotrexate worked really well for me in my small bowel and even with acid reflux well, but i still had some rectum and lower colon pain, and that really helps taht out, i knw it doesnt make sense at all that Methotrexate would only help the upper portion basically because it affects the immune system entirely not an organ like a pill does or anything, but for some reason thats where it helped me. I actually think that me and my doctor count methotrexate as one of the best drugs for me, and Ive tried most of the drugs out for crohns that are on the stronger end(and theres only a couple listed on that list, like prednisone and methotrexate and maybe one or two more).
Anyways, What I found also is I dont really experience any side effects with it. I know that the first biologic I had tried was 6mp, but it affected me significantly by making my blood counts low and white counts high and i had to be isolated and get hemoglobin and hemocrit i believe weret he two, one i got once a week and one i got daily to fix what the 6mp did, so I cant take that anymore, nor can i tolerate and think similiar like Imuran.
So when I had gone to one of my GI, my local GI, (and I keep a GI at a university hospital in Richmond, Va, my capital), me and him decided that I would get my first couple of injections of methotrexate in the office and wait no shorter then 30 minutes afterwards to see if he noticed anything change or if i felt certain things. the first time i got it it gave me a headache and i felt like i had a tight chest, but honestly i think it was just anxiety of trying another biologic drug like the 6mp after what it did to me. Headaches were pretty bad. I waited in the office for I think 3 times, and the 2nd and 3rd day i had no symptoms. The only symptom I eventually got was off and on headaches, I was already going to a pain management dr at the time so I told him about it and he gave me fioricet(spelling) , the non-codeine version, with just barbiturates, tylenol and caffeine i believe. Anys they really helped me quite well, I would just take one prior to taking my injection and that stopped them completely. I never had side-effects with the humira at all though which i good i like, I do which the injection pen was different like a normal/regular needle. I actually only needed that fiorinal for about 6 to 8 months of the injections and off and on and sometimes not at all. I know that my dr gave me a prescription of 45 in a bottle i think, and basically when i ran out it got refilled because he gave me refills. I actually dont think i even got to the 2nd script or i might have just got the 2nd script but they lasted me a while and worked well, I praise fiorinal its really good medciation for headaches. I think its actually labeled as for tension headaches but i think their used on all and other things also off-label.
I hope you do this and have as good luck as Ive had with it I really do. I know how hard it can be to find the right combination of medications, can take years, literally to find. You might find one that works but have 7 others taht dont you dont know if they do.
by the way can I ask why your taking the humira weekly and not bi-weekly AND also taking the methotrexate? I can understand , ok maybe you need the humira weekly, but then why would your dr give you methotrexate and ALSO double your himira by giving a whole entire other injection of humira? Why does he not just keep you at the weekly humira, give you the methotrexate and give it like 3 months to see how iworks/affects you and such and then make a decision based on how your doing, on whether he needs to go on up to 2 doses of humira a week. That sounds like the best way to do it I would think. And if he hasnt said hes doing this, and just thinks eventually he thinks he'll be at 2 doses of humira a week also then ok, but I wouldnt want to go up and start a new.
I would bring it up to your Dr that you would like to start the methotrexate like he wants but you would like to just stay at the humira weekly and see how it makes you feel in say 3 months, so it gives enough time for the methotrexate to kick in, and then make a decision based on how you feel and test results at that point if you need to go to 2 doses of humira a week. Because do you realize if you went to 2 doses a week that would be quadruple or 4 times the amount of the normal Crohns patient or any paitients normally gets? I mean that almost sounds dangeroug, if he recommends it then it must not be and you should trust him, just sounds to the ear like qute a lot, but you know if the 'recommended' dose of what they say works for most people is at this number and your taking 4 times that number plus ANOTHER medication to do the same thing....then wow thats consierable.
I give you praise for being 'brave' as some would think like me, and diving into the world of 2 biologics. Its really becoming more common as I was saying, its more common to see someone taking Remicade and another immuno-suppresent. I believe the most common biologics used in combination with another are Humira, Remicade, Methotrexate, usually if someone is taking 2, then atlest one of them is one of these 3, if not both of them being one of these 3. Its just reseerved for an agressive form of the disease in which most people get 2.
Goo luck and I hope you do well I reaaaaallly ramble lol. sorry Im bored. and found it interesting that your going to take the same 2 as me which i havent come across anyone else like that, more or less many with 2 period. wanted to addd my 2 cents, figured most wouldnt know about it from experience or might disagree with using two biologics so i figured a more postitive view is always needed and thats usually me thats chimes in in that situation. such as applying for disability is always a neagative experience post, so i telll my postive experience story lol.
Thanks for listening to my bull sarah and who all is reading. My name Chris by the way Sarah if i ddnt mention it in here
GOOD LUCK!!!