Comments for Managing Multiple Sclerosis http://www.managing-multiple-sclerosis.com Fri, 25 Jul 2008 18:27:45 +0000 http://wordpress.org/?v=2.2.1 Comment on Copaxone Allergy Developed by Vincent Moore http://www.managing-multiple-sclerosis.com/2007/07/01/copaxone-allergy-developed/#comment-366 Vincent Moore Sun, 06 Jul 2008 02:05:16 +0000 http://www.managing-multiple-sclerosis.com/2007/07/01/copaxone-allergy-developed/#comment-366 Lee, thanks for stopping by! I wish it wasn't the Copaxone that was causing it but it definitely was unfortunately. I'd inject and within 10 or 15 minutes, max, I'd be itching like crazy and breaking out in hives. This was totally predictable. As for other meds, I'm still taking everything else the same as before so it's not those causing it. I guess I'm slow to develop allergies to things. I took penicillin several times before developing an allergy. Ceclor is another antibiotic that did the same thing to me. I must have taken full regimens of it 12 - 15 times before suddenly having a major reaction to it. It's kind of strange how those things happen! Anyway, the neurologist moved me to Rebif, which I took a few times, and quit. As for now, I'm taking no shots whatsoever. The Rebif makes me feel like absolute crap, just as the Avonex did in the past. For now, I think I'm going to wait for the oral medication to hopefully make it to market. I don't remember the name of it but it sounds really promising and I believe it's in a Phase III trial now. How is the Tysabri working out for the wife? I've thought about going that route but I've been a little nervous about trying it in light of the previous PML issues. Of course, from what I've read, there have been no further cases of PML since they stopped doing the combination of Avonex and Tysabri together. Thanks for stopping for a visit. I don't always update this as regularly as I should (MS, lack of focus, and fatigue - imagine that!) but I do try to answer back to comments promptly! I hope to see you around again! Vince Lee, thanks for stopping by! I wish it wasn't the Copaxone that was causing it but it definitely was unfortunately. I'd inject and within 10 or 15 minutes, max, I'd be itching like crazy and breaking out in hives. This was totally predictable. As for other meds, I'm still taking everything else the same as before so it's not those causing it.

I guess I'm slow to develop allergies to things. I took penicillin several times before developing an allergy. Ceclor is another antibiotic that did the same thing to me. I must have taken full regimens of it 12 - 15 times before suddenly having a major reaction to it. It's kind of strange how those things happen!

Anyway, the neurologist moved me to Rebif, which I took a few times, and quit. As for now, I'm taking no shots whatsoever. The Rebif makes me feel like absolute crap, just as the Avonex did in the past. For now, I think I'm going to wait for the oral medication to hopefully make it to market. I don't remember the name of it but it sounds really promising and I believe it's in a Phase III trial now.

How is the Tysabri working out for the wife? I've thought about going that route but I've been a little nervous about trying it in light of the previous PML issues. Of course, from what I've read, there have been no further cases of PML since they stopped doing the combination of Avonex and Tysabri together.

Thanks for stopping for a visit. I don't always update this as regularly as I should (MS, lack of focus, and fatigue - imagine that!) but I do try to answer back to comments promptly! I hope to see you around again!

Vince

]]> Comment on Copaxone Allergy Developed by Lee White http://www.managing-multiple-sclerosis.com/2007/07/01/copaxone-allergy-developed/#comment-365 Lee White Sat, 05 Jul 2008 22:29:39 +0000 http://www.managing-multiple-sclerosis.com/2007/07/01/copaxone-allergy-developed/#comment-365 Are you sure the allergy was to the Copaxone? My wife took Copaxone until she switched to Tysabri after several relapses. Her allergic reaction was to Tegretol, not Copaxone. Once she stopped taking Tegretol for trigeminal neuralgia and started Neurontin (Gabapentin), the hives disappeared and have not returned. Are you sure the allergy was to the Copaxone? My wife took Copaxone until she switched to Tysabri after several relapses. Her allergic reaction was to Tegretol, not Copaxone. Once she stopped taking Tegretol for trigeminal neuralgia and started Neurontin (Gabapentin), the hives disappeared and have not returned.

]]> Comment on Copaxone Allergy Developed by Kimberly Pessoni http://www.managing-multiple-sclerosis.com/2007/07/01/copaxone-allergy-developed/#comment-338 Kimberly Pessoni Sun, 15 Jun 2008 04:33:58 +0000 http://www.managing-multiple-sclerosis.com/2007/07/01/copaxone-allergy-developed/#comment-338 I had a similar experience... I started on Copaxone. Tolerated it well, and loved it about as much as I could love injecting myself daily... I don't think I went 6 months and I had a severe allergic reaction to it - alaphyaxsis. It was nasty. Went to an allergy specialist so they could "desensitize" me to it - then back to Copaxone.... didn't go another 3 months when it happened again but this time landed me in the emergency room. Severe. Then switched to Rebif - again tolerated it well, until my liver functions continued to spike. Finally elevated so severely that they took me off it. I just started Tysabri last month. Went for my second infusion (first was great) during the infusion, broke out in head to toe hives... back to the drawing board... anyone else? I had a similar experience… I started on Copaxone. Tolerated it well, and loved it about as much as I could love injecting myself daily… I don't think I went 6 months and I had a severe allergic reaction to it - alaphyaxsis. It was nasty. Went to an allergy specialist so they could "desensitize" me to it - then back to Copaxone…. didn't go another 3 months when it happened again but this time landed me in the emergency room. Severe.
Then switched to Rebif - again tolerated it well, until my liver functions continued to spike. Finally elevated so severely that they took me off it. I just started Tysabri last month. Went for my second infusion (first was great) during the infusion, broke out in head to toe hives… back to the drawing board… anyone else?

]]> Comment on Plavitron for MS??? Not really! by Lisa Emrich http://www.managing-multiple-sclerosis.com/2008/03/07/plavitron-for-ms-not-really/#comment-247 Lisa Emrich Fri, 21 Mar 2008 01:22:47 +0000 http://www.managing-multiple-sclerosis.com/2008/03/07/plavitron-for-ms-not-really/#comment-247 Hi, I apologize for the 'form' letter but it is the easiest way to pass word most quickly. I am thrilled with the response to the MS Blogger project started at my blog, <a href="http://brassandivory.blogspot.com/" rel="nofollow">Brass and Ivory</a>. I appreciate all those who took time to post about it on their blogs. I have discovered even more bloggers who have MS, whether they blog about the MS or not. A new listing is available at <a href="http://brassandivory.blogspot.com/2008/03/ms-blogger-community-project-revised.html" rel="nofollow">MS Blogger Community Project Revised</a>. Secondly, I'm looking for submissions for next week's Carnival of MS Bloggers. Information can be found at the end of each issue archived at <a href="http://carnivalofmsbloggers.blogspot.com/" rel="nofollow">Carnival of MS Bloggers</a>. What I'm looking for this week are posts related to creativity. I discovered so many new bloggers who quilt, or knit, or crochet, or write, or photograph, etc. Basically, what do you do to express yourself? Thank you so much for participating. Lisa Emrich P.S. I also apologize for any increased 'spamming' of blog comments due to my growing linklist of bloggers with MS. For that I am sincerely sorry. Hi, I apologize for the 'form' letter but it is the easiest way to pass word most quickly.

I am thrilled with the response to the MS Blogger project started at my blog, Brass and Ivory. I appreciate all those who took time to post about it on their blogs. I have discovered even more bloggers who have MS, whether they blog about the MS or not. A new listing is available at MS Blogger Community Project Revised.

Secondly, I'm looking for submissions for next week's Carnival of MS Bloggers. Information can be found at the end of each issue archived at Carnival of MS Bloggers. What I'm looking for this week are posts related to creativity. I discovered so many new bloggers who quilt, or knit, or crochet, or write, or photograph, etc. Basically, what do you do to express yourself?

Thank you so much for participating.

Lisa Emrich

P.S. I also apologize for any increased 'spamming' of blog comments due to my growing linklist of bloggers with MS. For that I am sincerely sorry.

]]> Comment on Plavitron for MS??? Not really! by Lisa Emrich http://www.managing-multiple-sclerosis.com/2008/03/07/plavitron-for-ms-not-really/#comment-225 Lisa Emrich Sat, 08 Mar 2008 21:45:52 +0000 http://www.managing-multiple-sclerosis.com/2008/03/07/plavitron-for-ms-not-really/#comment-225 Hi, I have an MS Blogger Project underway over at my place. Please visit <a href="http://brassandivory.blogspot.com/2008/03/ms-awareness-blogging-friends-and.html" rel="nofollow">MS Awareness, Blogging Friends, and a little Link Love</a> to join in. Thanks, Lisa Hi,

I have an MS Blogger Project underway over at my place. Please visit MS Awareness, Blogging Friends, and a little Link Love to join in.

Thanks,
Lisa

]]> Comment on Multiple Sclerosis and Anti Anxiety Medication by sandra http://www.managing-multiple-sclerosis.com/2007/02/19/multiple-sclerosis-and-anti-anxiety-medication/#comment-220 sandra Tue, 04 Mar 2008 20:16:34 +0000 http://www.managing-multiple-sclerosis.com/2007/02/19/multiple-sclerosis-and-anti-anxiety-medication/#comment-220 I have RRMS dx 2 years ago I am 60. The shrink wants me off of Librium cold turkey and start Klonopin, is this safe? To my understand drs will not prescribe Librium because it is addicting and old. sandra (email me) thanks I have RRMS dx 2 years ago I am 60. The shrink wants me off of Librium cold turkey and start Klonopin, is this safe?

To my understand drs will not prescribe Librium because it is addicting and old.

sandra (email me)

thanks

]]> Comment on Multiple Sclerosis Video Section Added by Lisa Emrich http://www.managing-multiple-sclerosis.com/2007/12/16/multiple-sclerosis-video-section-added/#comment-153 Lisa Emrich Thu, 27 Dec 2007 03:29:57 +0000 http://www.managing-multiple-sclerosis.com/2007/12/16/multiple-sclerosis-video-section-added/#comment-153 Hi, I've decided to start a Blog Carnival specifically for those with MS or those who discuss MS. You are invited to participate. Information is available at http://brassandivory.blogspot.com/2007/12/announcing-new-carnival-of-ms-bloggers.html thanks, Lisa Hi,

I've decided to start a Blog Carnival specifically for those with MS or those who discuss MS. You are invited to participate. Information is available at http://brassandivory.blogspot.com/2007/12/announcing-new-carnival-of-ms-bloggers.html

thanks,
Lisa

]]> Comment on Multiple Sclerosis Video Section Added by Karoly Domonyi http://www.managing-multiple-sclerosis.com/2007/12/16/multiple-sclerosis-video-section-added/#comment-145 Karoly Domonyi Mon, 17 Dec 2007 09:35:50 +0000 http://www.managing-multiple-sclerosis.com/2007/12/16/multiple-sclerosis-video-section-added/#comment-145 Hi, Your site is one of my favorites seen around blog explosion. Keep up the good work. I enjoy reading your blog. It is great to find someone who can find the fun things in life! I wish you all the best in all years. Please take a look at my websites as well. I look forward to developing a friendship and networking with you. Let me know if there is something I can do to assist you with your business. With Regards, Karoly Domonyi http://www.Aries.hu http://www.ariestrade.com http://www.AddProductFree.com http://www.AddWebSiteFree.com Hi,

Your site is one of my favorites seen around blog explosion. Keep up the good work.
I enjoy reading your blog. It is great to find someone who can find the fun things in life!

I wish you all the best in all years.

Please take a look at my websites as well. I look forward to developing a friendship and networking with you.

Let me know if there is something I can do to assist you with your business.

With Regards,

Karoly Domonyi
http://www.Aries.hu
http://www.ariestrade.com
http://www.AddProductFree.com
http://www.AddWebSiteFree.com

]]> Comment on Copaxone Allergy Developed by Vincent Moore http://www.managing-multiple-sclerosis.com/2007/07/01/copaxone-allergy-developed/#comment-39 Vincent Moore Fri, 27 Jul 2007 17:29:25 +0000 http://www.managing-multiple-sclerosis.com/2007/07/01/copaxone-allergy-developed/#comment-39 I miss my Copaxone already! I just started on the Rebif titration pack. I've had a total of 3, 8.8 mcg injections so far. Three more of those and I get to move up to the 22 and then up to the 44. I have a suspicion that I'm not going to like this stuff though. I originally started on Avonex and never could quite get used to it. They tell me that, since the Rebif stays in your system, due to injecting 3 times weekly, that it's easier to adapt to than Avonex which is only injected once a week. I guess that Avonex creates more of a roller coaster ride of ups and downs. I do hope that the Rebif and I will get along. If not, maybe I'll have to look seriously at Tysabri. At least take it into consideration, although I'm still a little scared of it! Thanks for posting Jenny and drop back by sometime! Vince I miss my Copaxone already! I just started on the Rebif titration pack. I've had a total of 3, 8.8 mcg injections so far. Three more of those and I get to move up to the 22 and then up to the 44.

I have a suspicion that I'm not going to like this stuff though. I originally started on Avonex and never could quite get used to it. They tell me that, since the Rebif stays in your system, due to injecting 3 times weekly, that it's easier to adapt to than Avonex which is only injected once a week. I guess that Avonex creates more of a roller coaster ride of ups and downs.

I do hope that the Rebif and I will get along. If not, maybe I'll have to look seriously at Tysabri. At least take it into consideration, although I'm still a little scared of it!

Thanks for posting Jenny and drop back by sometime!

Vince

]]> Comment on Copaxone Allergy Developed by Jenny http://www.managing-multiple-sclerosis.com/2007/07/01/copaxone-allergy-developed/#comment-38 Jenny Fri, 27 Jul 2007 13:51:17 +0000 http://www.managing-multiple-sclerosis.com/2007/07/01/copaxone-allergy-developed/#comment-38 I also loved taking Copaxone for my MS! Everything seemed to be going great for almost a year and a half - with no real side effects, site reactions, or that day after feeling of crud. Then sddenly, directly after injection of Copaxone I would begin to develop these huge areas near my injection site - usually one one foot by one foot. They looked and felt like bee stings and would take quite some time to go away. I am now taking Rebif and am pretty happy with the drug - thus far - and only when I take Advil with it. The only complaint I have with Rebif is the day after feeling of crud - but, you have to keep going. I also loved taking Copaxone for my MS! Everything seemed to be going great for almost a year and a half - with no real side effects, site reactions, or that day after feeling of crud. Then sddenly, directly after injection of Copaxone I would begin to develop these huge areas near my injection site - usually one one foot by one foot. They looked and felt like bee stings and would take quite some time to go away. I am now taking Rebif and am pretty happy with the drug - thus far - and only when I take Advil with it. The only complaint I have with Rebif is the day after feeling of crud - but, you have to keep going.

]]>