Search found 188 matches

by Grumpster
Tue Aug 29, 2017 4:18 pm
Forum: Campath (Lemtrada, Alemtuzumab)
Topic: Day 2 of LEmtrada - Round 2
Replies: 1
Views: 2043

Re: Day 2 of LEmtrada - Round 2

Update - the 3 day treatment went fairly well, glued to the ceiling for 3 days on Solumedrol, dizzy and queezy, as expected. Things seemed pretty good overall. When I woke Sunday morning my hives and Campath rash were in FULL bloom. It looked like my skin was about to peel off and start oozing. I do...
by Grumpster
Tue Aug 29, 2017 4:11 pm
Forum: General Discussion
Topic: Nostalgic reminiscions of a man I used to know.
Replies: 24
Views: 4397

Re: Nostalgic reminiscions of a man I used to know.

Somehow this old post came up on my profile today. It has been a while since I originally posted, but much still remains the same for me. I have learned to live better with the MS crap, but the fire and passion for life, the happy fun guy, not so much. My wife told me I am always grumpy again last n...
by Grumpster
Thu Aug 24, 2017 1:21 pm
Forum: Campath (Lemtrada, Alemtuzumab)
Topic: Day 2 of LEmtrada - Round 2
Replies: 1
Views: 2043

Day 2 of LEmtrada - Round 2

I just finished up day 2 of Lemtrada. Seems to be going ok so far except headache and lack of sleep from steroids. I got Campath during the MS Care trial in 2010 at the high dose and got ITP. Hopefully this new lower dose will not give me that but will still beat back the MS monster for a while. I s...
by Grumpster
Mon May 22, 2017 10:51 am
Forum: Ampyra
Topic: Modified ampyra dosage??
Replies: 4
Views: 2148

Re: Modified ampyra dosage??

Thanks Moragh,

I think I may need to try something like that after discussing with my neuro. Otherwise I may just stop taking it since I do not seem to get much benefit from the current dosage/frequency.
by Grumpster
Thu May 18, 2017 11:59 am
Forum: Ampyra
Topic: Modified ampyra dosage??
Replies: 4
Views: 2148

Re: Modified ampyra dosage??

Do you feel this gives you added benefit? I assume so. Please confirm.

Thanks
by Grumpster
Fri May 12, 2017 2:10 pm
Forum: Campath (Lemtrada, Alemtuzumab)
Topic: Campath - retreatment after ITP the 1st time??!!
Replies: 7
Views: 2258

Re: Campath - retreatment after ITP the 1st time??!!

I saw the hematologist yesterday and we discussed another round of Campath at the low dose. she was the same one that treated me when I got ITP last time. All my current blood work is normal, platelets at 245 which is high normal :) Anyway she said that she would not exclude taking more of the crap ...
by Grumpster
Wed May 03, 2017 4:01 pm
Forum: Ampyra
Topic: Modified ampyra dosage??
Replies: 4
Views: 2148

Modified ampyra dosage??

Has anyone done any modifications to the dosage/frequency for this drug? I had what seemed to be substantial benefit from this drug within 3 days or so of starting it, but it would only last a few hours each day and then back to baseline. This happened 3 days in a row and then there seemed to be no ...
by Grumpster
Tue May 02, 2017 8:13 am
Forum: Campath (Lemtrada, Alemtuzumab)
Topic: Campath - retreatment after ITP the 1st time??!!
Replies: 7
Views: 2258

Re: Campath - retreatment after ITP the 1st time??!!

"These results suggest that low protein intake during middle age followed by moderate to high protein consumption in old adults may optimize healthspan and longevity." Interesting, I doubt I will live another 20 years, longevity actually seems it may be a bad thing if I keep on the current trajector...
by Grumpster
Mon May 01, 2017 1:38 pm
Forum: Campath (Lemtrada, Alemtuzumab)
Topic: Campath - retreatment after ITP the 1st time??!!
Replies: 7
Views: 2258

Re: Campath - retreatment after ITP the 1st time??!!

I was prescribed antihistamines and the antiviral used for herpes (valtrex?). I do not recall any antibiotics. I may give the paleo diet a shot. Most foods and beverages I like are prohibited so that will be a challenge. I am kind of at wits end and still seriously considering taking more of that al...
by Grumpster
Fri Apr 14, 2017 6:58 pm
Forum: Campath (Lemtrada, Alemtuzumab)
Topic: Campath - retreatment after ITP the 1st time??!!
Replies: 7
Views: 2258

Re: Campath - retreatment after ITP the 1st time??!!

Thanks, like what? It seemed all the oral medications have some bizarre side effect of Their Own. I was thinking about taking Tec But that has PML risk, tysabri has the same PML risk. I tried to all the interferons. And campath is the only damn thing that seems to have had any beneficial effect on m...
by Grumpster
Fri Apr 14, 2017 10:41 am
Forum: Campath (Lemtrada, Alemtuzumab)
Topic: Campath - retreatment after ITP the 1st time??!!
Replies: 7
Views: 2258

Campath - retreatment after ITP the 1st time??!!

SO I was in the CARE MS trial and got the high dose for the full week. It was very effective for me neurologically, but after 6 months I got ITP, badly, and it was scary. I recovered after steroid treatments, but could not get the second treatment. My MS has been progressing lately, mostly walking, ...
by Grumpster
Wed Apr 08, 2015 4:28 pm
Forum: Campath (Lemtrada, Alemtuzumab)
Topic: MS drug Lemtrada to be resubmitted to FDA for approval
Replies: 3
Views: 4296

Re: MS drug Lemtrada to be resubmitted to FDA for approval

I was in a Campath trial, got the high dose. It was very effective for my MS symptoms and progression. I have not had any true relapses since I got the one week of infusions. The side effects were NASTY and I gt the usual rash and skin crawling, but it seemed to really help me. Then 6 months later, ...
by Grumpster
Tue Mar 24, 2015 4:52 pm
Forum: General Discussion
Topic: This is it!!! Beginning of the End!!!
Replies: 33
Views: 5017

Re: This is it!!! Beginning of the End!!!

If it were not for vaccinations, we probably would not be reading this. because either our ancestors would have, or if we managed to get born at all, we would probably have died of smallpox by now. Thanks 1eye, you are so correct. Celeste 485 is way off base and in the Jennifer McCarthy camp on vac...
by Grumpster
Mon Mar 23, 2015 3:42 pm
Forum: General Discussion
Topic: This is it!!! Beginning of the End!!!
Replies: 33
Views: 5017

Re: This is it!!! Beginning of the End!!!

If it were not for vaccinations, we probably would not be reading this. because either our ancestors would have, or if we managed to get born at all, we would probably have died of smallpox by now. Thanks 1eye. It seems like Celeste485 is in the same camp as Jennifer McCarthy. Vaccines have saved c...
by Grumpster
Wed Feb 25, 2015 1:20 pm
Forum: Ampyra
Topic: Ampyra Seizures anyone?
Replies: 4
Views: 3289

Re: Ampyra Seizures anyone?

Thanks Questor. The seizures scare me the most. I still have not started the 60 day trial I have.