Just need to rant a little bit.

I've been on remicade infusions now for over a year.  Started out with the normal dose every 8 weeks.  Quickly realized that was not going to cut it so we went for double the dose every 8 weeks.  Quickly realized after that we needed to also increase the frequency so now I get double the dose every 6 weeks.  Problem is I flare around 4 weeks post infusion and things get really bad the week before.  I have crohn's in my esophegus, throat, mouth, and gums.  I get severe swollen lips, face and gums.  I can't swallow to well and I run a fever.  After infusion it goes away.  I asked the GI if we could possibly go to infusing every 4 weeks and he said he wouldn't suggest that.  He did want to though add 6mp or methotrexate to the remicade.  I've been on methotrexate before and I had to get the injection twice a week every 2 weeks b/c it just didn't do anything with the normal dose.  This would be the 3rd time on 6mp and the two times before I could never get to a theraputic dose b/c my white blood count would start to plummet if we pushed it any higher.  One time my hemoglobin dropped to 5.9 and I needed to be admitted into the hosptial to get 4 units of blood.  Also that was scary was the first night I was in the hospital my blood pressure plummetted to a scarey 70/59.  I had about 4 nurses and 3 doctors in my room giving me bolis after bolis of saline.  Taking my bp every half hour.  It's insane.  I just recently had my second small bowel resection in may.  I just can't take this anymore.  Nothing helps.  I'm constatnly ping ponging back and forth between meds I've already been on b/c nothing works and if it does it only works for a short while.  I've been on all the biologics, cimzia, humira, and currently on remicade.  Been on 6mp, azathiprine and allopurinol together, methotrexate.  Had to small bowel resections.  First one due to such a diseased bowel that I was running 105 fevers in the hospital and had many nurses and doctors trying desperately to get it down wrapping me in wet blankets and surrounding my body with ice packs.  It's rediculous.  When is this going to get better?  I'm 30 years old and have had this for 10 years.  It's getting progessively worse with no resolve in sight.  My remicade infusion is not until tuesday.  My husband and I got the go ahead from both the surgeon and gi to try and get pregnant but how the hell am I supposed to do that like this?  I've already miscarried a year ago this month.  I don't want that to happen again.  Thanks for listening to me rant.  I'm just so frustrated and know of all people, my fellow crohn's sufferes would understand.  Hope everyone is feeling and good and continue to stay that way. 

Thanks Gumby44.  These new meds need to come out a lot quicker lol.  I don't know how long my body is going to wait.

Hi Bella, I am so sorry you are having such a hard time. There are many of us out there that cant seem to get this DD completely under control 100% of the time. I just got back on Cimzia again after my crohns spread throughout my system so I can understand and sympathize with your frustrations. If you had luck with Cimzia at one time, you may want to consider trying it again. I initially took it for several years and it became noneffective but after a year or so break, I tried it again and it is working again.

Have you tried probiotics? These help me by making my disease less aggressive and more responsive to medications.

Diet help me also. I cant follow SCD or Paleo fanatically as I should but when things are bad, I do a gluten free, high protein, dairy and sugar free diet as long as I can possibly do it.

There are also several supplements that seem to help.

I wish you the best and hope you get to feeling better soon!

 

Thank you everyone for your replies and advice.  I do live in the US and I have never heard of those therapies that you speak of but I will research them.  My GI doc has sent me into Manhattan to see another dr b/c quite frankly I dont think he even knows what to do with me anymore.  I went to Mt. Sinai and got the appt with the chief of Gastroenterology.  He also suggested going on remicade and combining it with another med.  He also suggested that I either go into a clinical study or try Tysabri.  I am terrified of that drug.  So I won't be trying that.  The matter of fact is that no doc knows exactly what to do with me.  But, in the meantime I'm suffering.  I've been on the liquid diet plenty of times.  Like you said short term solution that really doesnt matter or help in the long term.  I have also been on a low residue/low fiber diet for about 3 years and docs told me adfter surgery I could resume a normal diet which I have.  So far I am able to tolerate nuts and fruits.  Problem is that now after surgery I cannot hold a bm to save my life.  Within a half hour to an hour after eating I am running for the bathroom.  It's pure liquid.  Sorry for the tmi.  I can't keep nothing in for too long.  I also go during the night which results in lack of sleep.  I just don't know what the answer is anymore.  but all your repsonses and advices is gladly welcomed and appreciated.

Aw Bella, I don't have much to add other than I'm sending good thoughts your way. Hang in there girl!

My doc has discussed questran but he said most of his patients hate the drug b/c they describe it as drinking beach sand.  He thinks things will get better as time goes on.  Now I'm having facial, lip and gum swelling.  I got a remicade infusion yesterday and still no better.  It just sucks.  I'm at the end of my rope and I just hope some other med comes out soon enough that it a lot more promising than the ones that are out there.

I don't know why he won't increase the frequency.   I'll ask him about it when I go next week.  I've actually never heard of anyone doing it that often but I guess there are apparently lol  Do you feel better getting it more frequently?