Crohn's Disease

Pete Zicato · 05-14-2018, 05:39 PM

You may remember (if your memory is better than mine) that I have fairly advanced Crohn's disease. Mostly I am ok since the last surgery, but the various drugs I'm on to keep me this way are NOT upside only.

So I am really happy to read about a new drug that is nearing release which is NOT just another immune-suppressor. I have my fingers crossed for this one.

RedHill Biopharma Announces RHB-104

Griff · 05-14-2018, 07:05 PM

I hope it comes through!

xoxoxoBruce · 05-14-2018, 08:09 PM

Hope they're not outrageously greedy.

Pete Zicato · 05-14-2018, 09:48 PM

Quote:

Originally Posted by xoxoxoBruce

Hope they're not outrageously greedy.

Yeah, that’s one of my fears.

monster · 05-14-2018, 10:21 PM

Can you find out who's running the studies? Could you be eligible?

Glinda · 05-15-2018, 04:40 PM

For the last 18 years, I've suffered from IBS (diarrhea specific; in other words, I've had never-ending diarrhea for 18 years. Yay.). Granted, it's not the same thing as Chrone's, but it's just as debilitating. Pain. Bloating. Surprise "episodes." I can't go anywhere without having a full-on bathroom/accident game plan in advance.

I've always avoided the "cure-all" drugs that might (or more likely, might not) have an positive impact on my condition.

Please be certain that the side effects of the treatment won't affect you in other, more-adverse ways!

Also, do a bit of research on medical marijuana. It has some amazing qualities that may help you without the debilitating side effects.

DanaC · 05-16-2018, 01:23 PM

My dermatologist has been suggesting I try immune suppression therapy for my skin. I'm not convinced.

I know 3 people who've gone down that route for various immune conditions - 1 has had a mixed experience - one has had an appalling experience and one has nothing but positive feedback.

I'm as undecided as I was before I sought their opinion :P

That new treatment certainly sounds interesting Pete. Might be great if it does what it says on the tin.

Clodfobble · 05-16-2018, 02:19 PM

Dana, do you guys have a version of the med called Gastrocrom in the UK? It kind of neutralizes parts of the immune system rather than suppressing it--like promoting condom usage instead of abstinence among teens.

Anyway, it's been a big help for the autoimmune issues in our house, in cases where traditional immune suppressors were only moderately effective.

DanaC · 05-16-2018, 02:50 PM

Hmm. I'll ask about that. Thanks Clod

Pete Zicato · 05-16-2018, 03:26 PM

Quote:

Originally Posted by monster

Can you find out who's running the studies? Could you be eligible?

I have an appointment scheduled with my gastro. It's one of the topics on my list.

Pete Zicato · 05-16-2018, 03:40 PM

Quote:

Originally Posted by DanaC

My dermatologist has been suggesting I try immune suppression therapy for my skin. I'm not convinced.

I know 3 people who've gone down that route for various immune conditions - 1 has had a mixed experience - one has had an appalling experience and one has nothing but positive feedback.

I would be much worse off without immune suppressors. But it's not all lollipops and sunshine. I have had eight surgeries for skin cancers; I'm on a first-name basis with my dermatologist.

Do you know what the standard treatment is for your skin issue?

05-14-2018, 05:39 PM	#1
Pete Zicato Turns out my CRS is a symptom of TMB. Join Date: Jan 2010 Location: Chicago suburbs Posts: 2,916	Crohn's Disease You may remember (if your memory is better than mine) that I have fairly advanced Crohn's disease. Mostly I am ok since the last surgery, but the various drugs I'm on to keep me this way are NOT upside only. So I am really happy to read about a new drug that is nearing release which is NOT just another immune-suppressor. I have my fingers crossed for this one. RedHill Biopharma Announces RHB-104 __________________ Talk nerdy to me.

05-14-2018, 07:05 PM	#2
Griff still says videotape Join Date: Feb 2001 Posts: 26,813	I hope it comes through! __________________ If you would only recognize that life is hard, things would be so much easier for you. - Louis D. Brandeis

05-14-2018, 08:09 PM	#3
xoxoxoBruce The future is unwritten Join Date: Oct 2002 Posts: 71,105	Hope they're not outrageously greedy. __________________ The descent of man ~ Nixon, Friedman, Reagan, Trump.

05-14-2018, 10:21 PM	#5
monster I hear them call the tide Join Date: Dec 2005 Location: Perpetual Chaos Posts: 30,852	Can you find out who's running the studies? Could you be eligible? __________________ The most difficult thing is the decision to act, the rest is merely tenacity Amelia Earhart

05-16-2018, 02:19 PM	#8
Clodfobble UNDER CONDITIONAL MITIGATION Join Date: Mar 2004 Location: Austin, TX Posts: 20,012	Dana, do you guys have a version of the med called Gastrocrom in the UK? It kind of neutralizes parts of the immune system rather than suppressing it--like promoting condom usage instead of abstinence among teens. Anyway, it's been a big help for the autoimmune issues in our house, in cases where traditional immune suppressors were only moderately effective. __________________ My book My other book My spirit animal

05-15-2018, 04:40 PM	#6
Glinda Fucktard Resistance League Join Date: Jun 2008 Location: 1.14 acres of heaven Posts: 1,512	For the last 18 years, I've suffered from IBS (diarrhea specific; in other words, I've had never-ending diarrhea for 18 years. Yay.). Granted, it's not the same thing as Chrone's, but it's just as debilitating. Pain. Bloating. Surprise "episodes." I can't go anywhere without having a full-on bathroom/accident game plan in advance. I've always avoided the "cure-all" drugs that might (or more likely, might not) have an positive impact on my condition. Please be certain that the side effects of the treatment won't affect you in other, more-adverse ways! Also, do a bit of research on medical marijuana. It has some amazing qualities that may help you without the debilitating side effects.

Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)