Oh , forgot to mention this . In my opinion, it is a crime to have a medicine that is working for somebody that is seriously very ill, and then take the medicine away from them. Its just criminal!!...
Good to hear of others on the medicine also. Long time no see to you sr5599. Hopefully, one day soon this is approved ,and we can begin to take it again. I know I felt a difference while I was on it....
I was on Prochymal back in March of 2008. Seemed to work well, but the trial was discontinued while I was in it. Now I am on Tysabri and I guess all I can say is that i am "hanging in there. I heard...
Hi everyone, I am just wondering how many of you guys are on pain meds and if you have trouble getting them from your GI or general practitioner? I am always given like a 60 pill container of...
When I was first diagnosed 4 years ago I was with a gal that was with me before I fell ill. This relationship was good and she understood me and the disease well. After we split, not due to the...
They inserted a PICC line. This is my fourth day on the TPN. It has been running 24hrs a day so far. The goal is to get me down to 12hrs per day, which would be way better cuz I could just hook up at...
Hi all, I was just wondering if anybody had experience with any of this. I just started TPN yesterday and it seems like my diarrhea has gotten worse since starting. I am just frustrated cuz it seems...
Cimzia didn't work for me , but Remicade and Humira didn't either , so I guess i am anti- TNF treatment resistant. My doc just took me off of it early this month. I thought it hurt a bit when the...
I just got done filling out 4 pages of paperwork that is required to get on Tysabri. It is called CD Touch, Tysabri Unified Commitment to Health.I guess that they monitor your health periodically and...
Wow, great to hear that u are doing so well on the Tysabri Mac_Gyver. I hope that I have the same sucess!! I should be starting it soon. Right now I am in the process of filling out the paperwork for...
Mac_Gyver- How did you feel before you were on the Tysabri? Were you ill for years? Also, I am just wondering what feeling great means because I haven't felt like that in 4 years!...
Good to hear that the tysabri infusion seems to go well. I dont know exactly when I will start because they have to go through all the insurance stuff first and I am sure I have to fill out a bunch...
Hopefully it goes good, they are in the process of setting it up. I hope I am not tied to that darn IV pump 24 hrs a day cuz I hate dragging those things around. I think just the extra nutrition and...
Hi, I was just taken off of the Cimzia yesterday by my doc. I have been on it since last Sept. and it hasnt done anything. By the way though, I also failed Remicade and Humira, so I am not an Anti-...
I had to order mine from my mail order pharmacy and have it sent to the hospital chemo department nearby me. Then on the set day I would show up at the chemo department at the hospital and have it...
Hi- I am not sure what the risks are with the TPN , but I would guess its fairly safe cuz they do it alot at hospitals. The risk that I would guess would be the greatest would be infection entering...
Hi all - Wondering if anybody can give me some advice on Tysabri. I will be going on it soon and would like to hear from others that have been on it. Saw my doc today and he is also putting me on TPN...
It works, I go in for my one year CT scan and follow up at the U of Minnesota tomorrow. There was a problem with the Placebo effect. Sounds like I will be going on Tysabri now with TPN to gain some...
Sorry for the late response, havent been on here in awhile,. Yes, I was in the Phase III Prochymal studies. I was really helped out by the initial 4 treatments over 2 weeks. Both my doctor and I came...
Hi , is there anybody out there that has had any similiar success in the Prochymal phase III trial. i posted the previous comment but there wasnt any response. Also, ( onebloodonelife)/ Is your GI...
Hi all I haven't posted in a long time now but was just going to give an update. I will be going down to Minneapolis , MN for my one year follow up visit in the Prochymal study. I wish they would...
Hi- Just wondering if anybody else has gotten into the Phase III Study for Prochymal? I was in the first trial 603 and have now been rolled over to the extension study 610. Just wondering if anyone...
I am a somewhat younger man with Crohn's disease, almost 29 now. I have found that it does make having a girlfriend harder , for me anyways. Somebody was right when they said that they missed being...
I am from Minnesota. I am going into study 610 this next Thursday. Hopefully this time I get the high dose- of course maybe I did the first time, who knows. Hoping that this second round of...
I understand how frustrating it can be getting into this trial. I was calling and emailing a couple times a week asking when they were going to start at the site I am at. They always told me a couple...
Yeah- You have to be off of all the biologics for 90 days I believe. I was off the Humira for well over a year before I started this trial. I was on it for probably two months total and then I had to...
It didnt seem like it was that hard for me to get into the trial. I met all the eligibility criteria but they didnt dig deep or anything. I hope you get in it though, I am still feeling better from...
Yeah- It looks like people are interested for sure so maybe there will be more that get into the trial....
Well- That sounds a little more logical to me. Ill have to check with her and see what the deal is. Yeah, it seems that no medicine works immediately - always takes time I guess to heal up previous...
What CDAI score did you have to have to be allowed into 610. My trial coordinator told me that my score had to be down to 150 to be able to be in 610. Seems like that would be asking alot but maybe...
I think that you are right about being randomized. I just had a brain lapse there or something. Did you continue to just feel better and better every week? Did it feel as if you were back to normal...
I'm definately feeling better than I was before I started this trial. I am far from perfect yet, but I am sure that all of this takes time to get stuff straightened out. I hate to be negative too,...
I feel like you do I guess. Its hard to know how i am responding so far. Sometimes i think that i am already responding and other times i feel like nothing has changed . I have noticed that the...
Thanks for the good thoughts sr5599! The smell is a rather odd thing. Seems like you can taste it right away in the back of your throat and then after a while you can kind of smell it coming off of...
Well- Had my second infusion today. Went just as well as the first one.I have my day 7 next Tuesday, and then I have to wait another week for the day 14. Don't want to jinx anything but it seems like...
Wow! I didnt think anyone would reply that fast to my post. It is really good to talk to you guys that are also in this trial or have completed it already. I cant wait for tomorrow to get another...
Hello all- I am new to this forum but thought I would jump in here. I just started the Phase III Prochymal study in Minneapolis, MN. I go in for my second infusion on this Friday the 28th. I havent...