Introduction- Neewbie to This Is MS

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Introduction- Neewbie to This Is MS

Postby Globug » Wed Jun 10, 2009 6:20 am

Greetings Everyone!
Just wanted to get my feet wet on this site as it is new to me. I was dx with MS in Sept. of 2008, but had it three years before dx. We believe it's progressive. Next neurology visit and mri should confirm.
I am presently on Rebif, doing better than last year this time, but in alot of pain.
Question??? Neuro is talking about stopping Rebif and putting me on Imuran, Cellcept, or Cytoxin. Is there anyone on this site on either of these and what's your results, tho I'm aware mine could be different? I'm not encouraged by what I read about any of them.
I look forward to your/anyone's response. Thanks.
Globug
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Re: Newbie to This Is MS

Postby NHE » Wed Jun 10, 2009 2:27 pm

Welcome to This Is MS. While I have not had experience with the three drugs that you mentioned, I did want to bring up that the Mayo Clinic provides a fairly comprehensive database of drugs and their known activities and side effects. For example, here is the information for Imuran, Cellcept, and Cytoxan. If you need assistance with any of the terminology, then you can access a free medical dictionary at Stedmans. I hope that this information is helpful. I've found that it often pays to do my own homework when considering new drugs. Hopefully, others will share their experience. I know that chronic use of low dose cytoxan has been discussed on the forums. You may want to try using the forum's search utility. Check out this FAQ first though for helpful suggestions.

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Appreciation For Informative Response

Postby Globug » Thu Jun 11, 2009 2:36 pm

I want to thank you so much for the informative response to my inquiry. I read the info. and am now more worried than ever! Also, thanks for the welcome. So far, you are the only one to respond.
I guess I'm on my pity pot. I feel so helpless with this disease and yet feel the need to be proactive in not letting it defeat me.
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Postby cheerleader » Thu Jun 11, 2009 2:52 pm

Hey Globug-
Welcome to TIMS. Sorry you find yourself here, this is a club noone wants to join, but we're all glad it's available to us- as people with MS and those that love them. You're allowed a pity party, it's a shock getting the diagnosis...but your impetus to fight back is a good one. There's alot of info here...use the search function up above to learn about nutrition, vitamins, and other treatment options. Lurk on different threads, find out how people are being proactive and trying to understand this disease. And if you need to whine... go ahead and know that it's safe to do that here as well.
wishing you options and healing-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Thanks For The Welcome

Postby Globug » Thu Jun 11, 2009 3:07 pm

Hi Cheer! Thank you for the nice welcome. I appreciate it. If I whine, perhaps you could bring the cheese! :lol:
I am trying to become familiar with the site, but feel a bit overwhelmed. Right now, I feel terrible and think I'm having an exacerbation.
I look forward to making new friends and getting to know you all.
Please forgive the briefness of this, but hope to talk with you more.
Globug
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Postby Loobie » Thu Jun 11, 2009 3:09 pm

Welcome Globug,

I see NHE has already replied to you and his leftover dead brain cells exceed my active ones so I'll just say welcome!!
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Postby AllyB » Fri Jun 12, 2009 1:02 am

Hey Globug - welcome, good to meet you, wish it was under better circumstances!
Lew is right (he often is, despite what he says about his active brain cells :lol: ) - I am so glad NHE responded to you - he might not have all the answers because no one does, but he is brilliant at helping you gather and make sense of whatever information there is available that might help you get a clearer picture.
If your disease is progressive, then maybe Rebif is not the drug for you - I don't know what is though, but I hope you find a medication or regimen that slows this nasty disease right down, I really do.
All the best - I know you are in a scary place, and the only advice I have is read as much as you can, and talk - here, with your doctor, wherever...
Al
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Re: Newbie to This Is MS

Postby NHE » Fri Jun 12, 2009 3:47 am

Hi Globug,
If you've done some searching around on ThisIsMS, you have probably found out that chronic use of low dose cytoxan can have some pretty bad side effects. However, there is a high dose protocol that people are using. It's still experimental but some people have found it helpful in slowing the progression of the disease, and even getting some function back. Look in the Revimmune forum for posts about that. Essentially, it's 4 days or so of intense chemotherapy which kills off your current immune system but leaves the stem cells in your bone marrow intact to generate a new, hopefully MS naive, immune system. The treatment is being done at Johns Hopkins if I remember correctly. I can't recommend it personally, but it might be something to discuss with your doctor.

You might also want to take a look at the two pipeline threads that Dignan maintains in the Drug Pipeline forum. That might give you some ideas about possible treatments for progressive MS.

In addition, are you currently taking any supplements? There has been a great deal of discussion on the Natural Approach forum about supplements and diet modifications which help control inflammation. If you have any questions, then just ask. I'm sure that the folks here will be happy to help you if they can.

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Loobie, Ally, and NHE

Postby Globug » Sun Jun 14, 2009 4:14 am

Thanks for the friendly welcome everyone. NHE, looks like you'll be my "go to" person. I must be doing something wrong. I found "no matches" on the Pipeline for Cytoxin. Pain, weakness, and eyes limit time on the computer. I will keep looking tho.
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Postby patientx » Sun Jun 14, 2009 7:05 am

Globug,

It's actually spelled CYTOXAN, with an "A", not "I." But you might want to search in the General Forum for this. I think NHE meant to search the Drug Pipeline for newer treatments that might be available for progressive MS. Cytoxan in the pulsed form has actually been used for many years.

If you wish to read about the method being used at Johns Hopkins you can browse the messages here:

http://www.thisisms.com/forum-37.html

As mentioned by NHE, this is different from the normal use of Cytoxan. Instead of regular doses, at say once a month, they use a high dosage over 5 days. The hope is that this will wipe out the immune system, and a new and improved one will grow back.
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CYTOXAN

Postby Globug » Sun Jun 14, 2009 9:25 am

Patientx, thanks for the correction. I feel sooooooooo rotten, will talk to you folks in more depth later. I feel like I should be brain dead. At least I'd be in NOOOO pain.
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