Infusion #3 is today. Hopefully the old veins cooperate, because the big thick IV is the worst part. I swear, they are trying to insert a drinking straw into my vein. That and the benadryl that gurantees me a nice little 45 minute power nap. I do actually think I am feeling a little bit better. Different at the very least. I think the side effect of muscle weakness is kicking in, as evidenced by personal worsts at the gym and lots of soreness after soccer. For the 3rd time in 3 trys I will be playing soccer within hours after the infusion. I still have pretty severe stomach pains, and haven't taken any meds for that in a long time. Just dealing with it.
I am trying very hard to minimize stress. Add a tough economy, divorce, no AC in the house and plenty of work related issues and it is a tough mix. I got some peace based on a legal decision last week that has helped reduce my stress level immesaurably. Thank god. Sorry these posts aren't very exciting but I know alot of you are anxious to know how these treatment works. I do recommend that if you have moderate to severe chron's, that you talk to your doctor about Osiris' Prochymal Clinical Research Study to see if it can help you out.
I am trying very hard to minimize stress. Add a tough economy, divorce, no AC in the house and plenty of work related issues and it is a tough mix. I got some peace based on a legal decision last week that has helped reduce my stress level immesaurably. Thank god. Sorry these posts aren't very exciting but I know alot of you are anxious to know how these treatment works. I do recommend that if you have moderate to severe chron's, that you talk to your doctor about Osiris' Prochymal Clinical Research Study to see if it can help you out.
6 comments:
Hello, Scott . . .
First time reader on your blog here. Good stuff, I must say! I especially enjoyed your, "You know you're a Crohnie when ..." signs. I laughed out loud a couple of times, and said to myself,"Been there, done that, and carried the extra briefs." (Hey, can we add that on? ... The briefs in your briefcase are from Hanes and FOTL.)
Me? A 56 year-old guy from NC, near Charlotte; semi-retired teacher and mobile DJ, had Crohn's since I was 30, but fortunately mostly in remission for the past 20 years; remarried just nine months ago; now experiencing my first serious flare-up since the late 1980s.
Anyway, I enjoy reading what you have to say and the way you say it, so I'll keep checking back in. Good luck with the Osiris study and adapting to your new single life. And for god's sakes, man, get some AC in that place!
Glad to here that things are going pretty well. We don't have anywhere local that is offering the Prochymal trial in my area. How many infusions will you get?
Mr. T - How is the flare-up going? What are you treating it with? At least you had a long break! AC comes next MOnday, thank god!
Tonya -
I will be getting 4. I have had 3 now and am definitely feeling "something"
Scottie,
glad to hear you are still doing okay so far with the study! I really do wish you the best. My son may start in with the phase III study as soon as mid-Sept.
Just an FYI - we've noticed that eating foods containing Tumeric & curcumin have a calming effect on the gut. And I don't think foods are limited on the study, so go make yourself some Curry! Feel better!
Hi Scott -
Another first time reader here. But, I also participated in the Prochymal trial last year. Coming up on the annual for 603, actually.
Got a great laugh out of the straw/IV analogy. Good one. I hated that part.
Good luck with the treatments. It's amazing stuff, really. And, good luck with your divorce. Got to be a hard time to transition.
Happy dreams of garlicky creamed corn! ;-)
sar
I am so interested in seeing how the Prochymal works out for you. I was the 14th person to do the stem cell transplant at Northwestern - 4 years ago tomorrow - didn't work, so I am keeping a close eye on this new therapy. Thanks for sharing your experience! About me - Crohn's for 18 years now - am now 31, done the divorce thing - that is not the easiest thing to do without having the Crohn's go crazy. Hopefully the results will be less stressful in the end! Good luck to you!
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