Multiple Sclerosis and Crohn's

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Crohns & MS
New Member


Date Joined Apr 2009
Total Posts : 15
   Posted 4/30/2009 11:30 AM (GMT -7)   
Hi,
 
I am 31 and was diagnosed in 2000 with MS.  Then in 2002-2003 I was diagnosed with Crohn's.  I was doing well for a while and then had a wonderful daughter in 2007 (off all medications for everything).  I have had issues with my Crohn's since the end of last year and they can't get it under control.  Because of my MS it limits the medication I can take for Crohn's (no Remicade or others like it).  So with Immuran not working for me anymore (like it did before I had my daughter) they said Tysabri was my last form of medication they can treat me with.  I want to know if anyone else out there has both Crohn's and MS and how are you being treated.  Also, if anyone takes Tysabri for Crohn's and how it's helped? 
 
Right now my daughter is almost 26 months and is an absolute outdoors person.  I just feel so bad because most of the time I have to send her father and her on their way to go play because I don't feel comfortable leaving the house (need to be by a bathroom at all times because of my Crohn's).  Sometimes I even have issues making my 10-15 minute ride into work without finding somewhere to stop. 
 
My MS has been under control with Avonex but lately I think I am having more issues with it because I seem to forget people's names (they eventually come to me but it takes a while) and that is something new I have not experienced before.  Is that MS or is that just a normal thing that occurs? 
 
Crohn's and MS

LymeFrustration
Regular Member


Date Joined Oct 2007
Total Posts : 61
   Posted 4/30/2009 8:36 PM (GMT -7)   
I am currently taking LDN (low dose Naltrexone) for my MS.  (I also have Lyme Disease and Hashimoto's disease and taking other medications for those diagnoses as well).  I am doing very well on the LDN, and I am just letting you know, as I believe LDN is also used for treatment of Crohn's disease.  This may be a way to treat both diagnoses with one med???  Not sure you can take LDN with Avonex, however.

popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 4/30/2009 9:58 PM (GMT -7)   
I definitely have had that problem with names or even finding the right words. It comes & goes.
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Plant your own garden & decorate your own soul instead of waiting for someone to bring you flowers.
Know that you are strong, worthy and can learn & endure.


kimor
New Member


Date Joined Apr 2009
Total Posts : 8
   Posted 7/3/2009 8:42 PM (GMT -7)   
Hi Crohn's and MS,
I have ulcerative colitis and I have pretty much run out of medication options. I have been approved for an experimental trial using Avonex injections twice a week. I find it interesting that you have Crohn's and are on Avonex for MS. Has any doctor mentioned the possibility that Avonex may help your Crohn's? Do you notice any difference in your Crohn's after an injection?

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3213
   Posted 7/3/2009 10:13 PM (GMT -7)   
Hey Kimor,
 
I had no idea that avonex was also used for UC.  I hope it works for you.  I am so sorry to hear that you are out of med options.  In MS most only use avonex once a week.  I do know of one MSer that takes it twice a week.  I am not sure how she does that with insurance. 
 
I wish you the very best of luck.  Please let us know how you are doing. 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


kimor
New Member


Date Joined Apr 2009
Total Posts : 8
   Posted 7/4/2009 10:56 AM (GMT -7)   
Hi Gretchen,

Thanks for the reply. The trial of Avonex for colitis is a phase 1 trial -so I don't think it has been used for colitis before this. I would be fairly worried about trying this out, but it sounds like Avonex has been around for a while.

Kim

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3213
   Posted 7/4/2009 4:08 PM (GMT -7)   
Hey Kimor,
 
Avonex has been round at least a decade.  It is very safe.  The side effects are temporary so if you can't tolerate it, you would be back to yourself after stopping it.  I am assuming you know that it is an IM injection.  Most people put it into a thigh muscle.  The side effects are not a lot of fun.  You will feel like you are having the flu for 5 to 8 hours after.  (chills, fever, aches).  Most people take ibuprofen about an hour before injecting.  Most people inject at night so they can sleep through the worst of the side effects.  Most people adjust to all this in a month or two and it becomes routine. 
 
 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Jin_Rou
Regular Member


Date Joined Aug 2009
Total Posts : 24
   Posted 8/18/2009 9:04 PM (GMT -7)   
"Very safe" is not a word I would use to describe Avonex. It causes liver damage and liver failure, low white blood cell counts, can induce anaphylactic shock in some people, suppress bone marrow and is positively associated with stomach and colon cancer......Its been on the market, but its one of the more dangerous drugs out there. It is allowed to stay on the market because Multiple Sclerosis is such a horrible disease and there is nothing more effective that is safer....Tysabri is more effective, but not safer.

LDN is the only other drug that can be used to treat both conditions. LDN is not proven to work in large scale studies, because the drug companies wont fund large scale studies for this expired patent, but there are small scale short term studies and huge bodies of anecdotal evidence to support its use. Anecdotal evidence, especially when there are large bodies of it, should not be dismissed as pseudoscience, so long as everyone is honest with the numbers.

Tysabri is one option. I happen to have Crohns and Multiple Sclerosis....I am starting on LDN as a first line of treatment. If this fails to keep both conditions in relative remission most of the time, then I will most likely resort to Tysabri.....I am trying the safer options first though.

popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 8/19/2009 5:51 PM (GMT -7)   
Hey Nick
I have been on LDN 2 months and LOVE IT. After two weeks taking 3mg at night the spasticity decreased noticeably at night but some during the day. Now I can kneel (stiffly) for the first time in 5 years and spasticity in my hand has decreased too. smilewinkgrin

It is said to prevent the progression of MS which is why I started. It is also CHEAP, a very low dose & SAFE, and has been used successfully in the US for more than a decade.

I think that it is a very good idea to try it first. You can always move onto the others if it does not help.

Good luck, let us know how you go
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.

"The past is history, the future is a mystery, the present is a gift."


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 8/19/2009 6:06 PM (GMT -7)   
Hey Nick

I have been on LDN 3 months and totally love it. It is said to stop the progression of MS (have to wait and see about that) it is CHEAP, low dose and SAFE and has been used in the US successfully for 10 Years. smilewinkgrin

I think it a very good idea to start with LDN (I started seeing results after 2 weeks) you can always try the others later if you feel it is not helping.

Good luck & keep us posted
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.

"The past is history, the future is a mystery, the present is a gift."


Denjski
Regular Member


Date Joined Aug 2008
Total Posts : 105
   Posted 8/19/2009 7:11 PM (GMT -7)   
I keep seeing more and more posts linking MS with IBS, Crohn's, UC and other brain gut dysfunctions. I wonder if there is a link between MS and the rest, or is it all just a badly programmed brain...does anyone know if the brains of people with the brain/ gut dysfunction also suffer physical damage like the brains of people with MS?
It seemed like a good idea at the time


Jin_Rou
Regular Member


Date Joined Aug 2009
Total Posts : 24
   Posted 8/25/2009 8:10 PM (GMT -7)   
Yes, there is definitely a link between MS and Ulcerative Colitis, what I was first diagnosed with before they changed my diagnosis to Crohns. There is also a link between MS and testing positive for Anti-Gliadin which suggests Celiac disease, but many with MS have the anti-gliadin but not the anti-tissue transglutamase which is the other blood test marker for Celiac. Some people seem to improve on a gluten free diet. My stomach continued to get worse however on a gluten free diet, despite my high hopes that it would be a cure all. MS seems about the same.

The theory is that all auto-immune conditions, or at least many of them which are not vaccine induced, start with leaky gut syndrome. From there, large molecules that the body does not know how to handle enter the blood stream when they were not supposed to, and the body starts to develop all kinds of antibodies to all sorts of proteins found in the blood and some of these resemble the building blocks of other cells which creates cross immunity to your own body......thats the theory anyway. I cant tell you definitely how true it is, or whether it is true in your individual cases.

popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 8/26/2009 12:34 AM (GMT -7)   
I have also read that there is a link between the gut and MS. Am very sure that this is true for me because I had very severe gastro at 12 which resulted in lifelong insommnia and a sensitive gut & allergies followed two years later by my most severe MS attack.
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.

"The past is history, the future is a mystery, the present is a gift."


Denjski
Regular Member


Date Joined Aug 2008
Total Posts : 105
   Posted 8/28/2009 5:21 PM (GMT -7)   
There may be something affecting the brain overall,,,,when it comes vaccines. it is not the vaccine itself causing problems, but what they use to store and preserve the vaccine can cause problems..

we are not supposed to eat three meals a day and always have a full stomach. its not natural to do so. our bodies evolved through sporadic meals on mainly fruits, vegetables, seeds, grains and occasionally very lean wild meat...and plenty of sunshine

I'm taking D3 and a diet of mainly fruits and veggies, high fiber breads and occasional meat... its usually turkey or chicken with a filet mignon with a borderlaise sauce with mushrooms about once every 6 months.
It seemed like a good idea at the time

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