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Crohn's and MS Support Group

soccermom081105

soccermom081105

This is my story. I was first diagnosed with MS in 2009 and Crohns in 2011(I think). Time is running all together.. I am a happily married female and mother of 3 kids.. None of who gets what is like to go through daily life with challenges. Yes, they are supportive when they can visibly see that something is going on.. I have been through mulitple CT scans and small bowel studies.. things seem to quiet down some and than all hell breaks loose. I never know when I am flaring or not. So I have learned to take it one day at a time. I am not sure what is worse having MS or Crohns but this is what I got and i am slowly learning to deal with it. So I figured I am not the only one out there with both diseases.. I am here for support if you need it.. :)
 
K

Kev

Senior Member
Location
Halifax, NS, Canada
Have you explored the possibility of treating both with LDN. I don't know the dosages for MS, but if it happens to mirror that for Crohns, you just might kill 2 birds with one drug.
 
soccermom081105

soccermom081105

I will look into that Kev.. right now I am on Tysabri to treat both.. It sucks every 4 weeks I have to go get an infusion throug IV and I am allergic to it too.. So It takes me longer to get through it'
 
J

julies-child

Hi, so happy to have found this group! I was diagnosed with Crohn's in 97. Diagnosed with ms in 2003. I have been on Asa,(for crohns) imuran Copaxone, gilenya ( doc thought it would help both diseases. Colonoscopy showed active disease and MRI showed a lot of knew lesions. Until something knew comes out they say imuran is really my only option. Lasted on imuran for about 8 weeks then had to go off. Caused bleeding problems like it did in the past(I also have a platlet problem) I said tysarabia sounds promising and my Doc's were not comfortable with the side effects. Any suggestions of what works for any of u?:smile:
 
Lending Lady

Lending Lady

Julie's child....

Let me introduce myself so you know your not in this journey alone. I was diagnosed with cd and ms in 2008 so talk about a double whammy! I immediately went on pentasa and remain on that now for cd. I immediately started betaseron for ms and was on that for 4yrs until my body developed a antibody resistance to it. So I started tysabri and remain on pentasa. Everyone's journey is different and no two are alike. But after a MRI I have no new and no active lesions and last month my colonoscopy shows no active cd. The tysabri for me has showed little side affects. It's once a month infusion and takes 4hrs from arrival to leaving. So far so good for me.

So again everyone is different but you are not alone. Please let me know if I can share any further support.
 
J

julies-child

Thank you/ it is so nice to be able to talk to someone going three the same thing. My Neuro or GI will put me on Tysabri? They say the side effects r 2 bad? Knew drug coming out in 2014 that shows great promise 4 ms and crohns. So as off now I am off Gilenya and imuran. We decided I will get a resection in early spring ( for my Crohn's) then go on this knew drug. I am happy about not having anything in my body ( imunsuppressant before surgery. But scared in the meantime that I will relapse. Take care have a Merry Christmas any input is Michele's appreciated.
 
L

Lauram4

Hi there, new to all of this but I was also diagnosed with both diseases this past year. Currently on prednisone and ldn for crohns, and gilenya for ms. Not sure if ldn is working yet, if it does I can stay on gilenya which I am very happy with so that is my goal. Julies-child, I'm very curious about the new drug you mention, what is it called? My docs want me to start tysabri and I'm just not comfortable with it yet. They tell me I cant take Imuran and gilenya together, has anyone heard that? GI doc says a new drug for crohns is on the way, vedolizumab, similar to tysabri but should only affect gut lymphocytes so it hopefully takes away the risk of pml, but that means it is likely not effective for ms. Thanks in advance for any thoughts.
 
D Bergy

D Bergy

Make absolutely sure that the MS is not actually Lyme disease. Lyme is far more common than MS and the symptoms are often indistinguishable. Lyme also weakens the immune system allowing Crohns to develop over time.

The reason that is so important is that the treatment for MS using immune suppressants is completely opposite of what you want for Lyme and will make it worse over time.

Since there is no reliable test for Lyme, the best test is to take a few doses of an antibiotic and see what your reaction is. If you get flu like symptoms, it is not MS.

You can use a natural antibiotic such as cats claw for the test.

LDN can be used for both Lyme and MS since it does not weaken the immune response.

Just my experience from a husband who's been treating his wife for Lyme Disease for many years. She is doing fine today.

Good luck.

Dan
 
soccermom081105

soccermom081105

D Bergy- I have heard that lyme can mimic MS. I know for me that I truly have MS. have lesions on both the spine and brain but also had a spinal tap to confirm it. For me the Tysabri is really helping the MS but the Crohns has not really responded to it as well as the doctors would like it but I am still doing okay. Hope all is having a better time of things
 
L

Lauram4

Hey guys,

Just thought I would give an update. I just had an appointment with an MS specialist at John's Hopkins and he pretty much said I have two options for treating both. 1. Tysabri 2. Imuran and Copaxone (or the other injectables but he recommends Copaxone). I, of course, am still hoping that LDN will work to control the Crohn's so I can stay on Gilenya. He also explained that Gilenya may not be working for Crohn's because it only effects a certain type of lymphocyte, and the GI tract has it's own sort of immune system that could be producing it's own inflammatory response. He also explained that if I chose Imuran it could make my risk of PML go up slightly should I decide to take Tysabri in the future. Last we checked I was JC Neg.

He also mentioned a similar disease to MS called Neuromylitis Optica which is ruled out with a simple blood test, but the treatment is different so he wants to be positive it isn't that.

I see my Gastro. on Feb. 6th and will pick her brain again about Vedolizumab, which may be approved this summer. And may have less side effects than Imuran since it is more targeted.

Glad I found you guys! Hope you're all doing well!!
 
L

Lauram4

Well, Imuran and Copaxone it is. LDN did not work for me, I feel like it may have helped a little but I still couldn't get off prednisone. I recently met with an MS specialist at Hopkin's, we talked about Gilenya and the possibility of it aggravating Crohn's. Since it works by trapping white blood cells in the lymph nodes and spleen, he said it's possible it is trapping inflammatory cells in the gut, not sure, but it's a possibility. Interesting.

He did not like the idea of Tysabri for me as he is not convinced it is that effective for treating Crohn's, and right now Crohn's is not under control. I am nervous about Copaxone though, taking so long to work and I wanted to be on something more effective. Has Copaxone worked for any of you? If so how long were you on it?

I will be doing 40mg Copaxone 3 times a week. He did mention a new therapy for MS hopefully coming out this summer, Pegylated interferon, which is pretty much longer lasting Rebif so injections would be once every two weeks, wouldn't that be nice?
 
L

Lauram4

Hey guys,

Just wanted to let you all know that Vedolizumab has been approved to treat Crohn's. It is kind of a sister drug to Tysabri, so if that hasn't worked well for you this may not be much better, but it comes without the higher risk of PML, and at least it is another option. The downside is that it doesn't treat MS, however my GI doc said I could take Vedolizumab along with Imuran if need be to control Crohn's, which really has me thinking....if Imuran is an immunosuppressant and can be taken with Vedo, I don't see why one of the other oral drugs for MS couldn't be taken with Vedo, such as Tecfidera, or maybe even Gilenya, since they are not blanket immune suppressants, but more specific, at least Gilenya is. I've been trying to get my docs to talk about this but I'm getting some push back since none of it has been studied, but it seems like an ideal treatment plan so I am really pushing for more info. If anyone is up for it please ask your doctors. I started my copaxone and find it quite painful, doing three times a week 40mg. There is another injectable up for approval for MS hopefully available this year. Plegridy, it is similar to rebif but has been pegylated which allows it to last longer in the body, which means one injection every two weeks. Hope you all are doing well!
 
R

rockinRT

Hi all!! I have known I have Crohn's since 1999, and next week I have my first brain MRI to look at possible MS. I'm on Remicade every 8 weeks, will be back on Methotrexate, and am in denial but want an answer to my pain.
 
L

Lauram4

Denial comes with the territory. I was there for sure. But I am happy to report that I am doing really well on Entyvio, infusion every 7 weeks. They still have me on Copaxone injections for MS, 3xs a week, and while it is not my favorite thing, it is also going well.

It is scary but I felt better after knowing what was wrong for sure. Hang in there. There are options and more are coming all the time.
 
R

rockinRT

Lauram4 said:
Denial comes with the territory. I was there for sure. But I am happy to report that I am doing really well on Entyvio, infusion every 7 weeks. They still have me on Copaxone injections for MS, 3xs a week, and while it is not my favorite thing, it is also going well.

It is scary but I felt better after knowing what was wrong for sure. Hang in there. There are options and more are coming all the time.
Click to expand...
I do love having an answer, and though it would be MS, I would rather that than no answer at all. However, I am a health care practitioner and see patients with different stages of MS and that REALLY frightens me!
 
L

Lauram4

I totally get that. The hardest part early on was going to the neurologist and seeing all the other patients. Had remind myself they didn't all have MS. It will get easier. I did become hopeful again. give yourself the time, you will get there. Try to keep in mind, the people you don't see, are the ones who are doing well, and there are a lot of us! :)
 
R

rockinRT

Lauram4 said:
I totally get that. The hardest part early on was going to the neurologist and seeing all the other patients. Had remind myself they didn't all have MS. It will get easier. I did become hopeful again. give yourself the time, you will get there. Try to keep in mind, the people you don't see, are the ones who are doing well, and there are a lot of us! :)
Click to expand...
You are so right! I have always been the youngest at my GI visits and will not be surprised if I see Neurology and have the same! And yes, my patients are usually at their worst and I need to be more aware of that. I am on day 4 of steroids to try and relax things or calm them but I seem to not be responding. My pain right now, and migraine, are the acute issues. I love how positive you are and that you are so supportive. My inspiration when I was younger was Ryan White. He once said on Donahue (age evidence there!!) to "stay positive" and it has always stuck with me. I just don't tell MYSELF enough! Hope you are doing well today!
 
R

rockinRT

3 weeks later and my doctor has not called about the MRI's nor the labs I had done (Lyme and B12). I'm optimistic but frustrated!
 
P

Piano Girl

Hello. I have had MS since 1987 and have done really well. Diagnosed with Crohn’s in 2001. Was on Imuran for 15 years. October 2016 had bowel obstruction. Bowel resection revealed cancer of ileal-cecal valve. Six months of chemo. Was on Avonex for MS for 15 years. Went off when I was hospitalized last year. Latest MRI showed a new lesion. Currently not on any meds for either disease. Neurologist wants to put me on Tysabri to treat both but I am nervous about side effects. Gastroenterologist wants me to seek second opinion since my Crohn’s progressed to cancer in only 15 years. Anyone else been on Tysabri? Has it been effective for both diseases? Side effects?
 
T

Tanya K

Hi. I'm so lost on where to post questions but maybe one of you can help me under this thread. I have Crohn's... I am self employed and under my husbands insurance. We have time but eventually, he will want to retire leaving us with no insurance. How do we pay for our medications? I know nothing about Medicare and all that. Do any of you have ideas or suggestions? I know the Stelara I get once every 2 months is $21,500. Thank God for insurance!!! Thanks.

Tanya.
 
A

adr810

Hi! I’m new to the group! I’m not sure if the board is still active but I was curious what everyone is using for treatments now. I’ve been on Entyvio since March and doing really well. I was diagnosed with MS 2 weeks ago and will be starting the Copaxone injections. I’m nervous about the injections but thankful to have the option. How is everyone?
 
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