Well it has been a long time sice I posted. I hit the 6 month mark recently. I had some immediate adverse events after the treatment, but then I have been doing well neurologically actually really pretty good. My balance, gait, and strength have been better. My vertigo that lasted > 1 year has subsided to very managable levels where it was at one point bringing me to the brink of the end of life as I knew it.
Bad news is 2 weeks ago I had my routine blood work. Got a call my platelets were low 69k. That is weird I thought, must be a bad test. Next test 2 days later 62k, then 49, 34, 19K... holy crud now things are really friggin scary. Seeing a hematologist now, started on prednisone and got back up to 80k within a few days. I am due for a new test this week to see how this holds. One can not stay on prednisone for too long so who knows how this will go. If my body has decided it does not like the antibody on my platelets so it must destroy them then it does not matter how much my body produces and nothing can really stop the process unless they remove my spleen. Hopefully I will stabilize without removing the spleen. I kind of like my spleen.
My GP and hematologist both said no mre Campath for you..... Another dose would be suicide they say. If I had this type of immune response already a second, or third dose would almost for sure induce another platelet destruction sequence. So if I navigate the ITP then i still will be once again without an effective MS treatment which so sucks since the Campath was very effective for me neurologicaly, but it came at a real high price. I guess i will try to enjoy whatever neuro benefit I have left from the initial treatment.
I was really feeling positive for the first time in many years, now I am just hoping to keep my spleen and not start a spontaneous bleed.
ms sucks!
Grumpster got ITP now
Grumpster,
I'm really sorry to hear that, man. That really sucks. Hopefully the prednisone will do the trick. Maybe you will only need one shot of the Campath, and the second infusion wouldn't even be necessary.
I almost feel like I shouldn't be writing this, since I was one of the people giving you encouragement to try the Campath, and I hope I didn't jinx you. But thanks for the update. Please let us know how things turn out.
I'm really sorry to hear that, man. That really sucks. Hopefully the prednisone will do the trick. Maybe you will only need one shot of the Campath, and the second infusion wouldn't even be necessary.
I almost feel like I shouldn't be writing this, since I was one of the people giving you encouragement to try the Campath, and I hope I didn't jinx you. But thanks for the update. Please let us know how things turn out.
Patient X, I do not blame anyone. I actually feel better now than I have in years which is so in conflict with what the hematologist tells me. I am bummed out, but I was at the edge of a cliff all of last year as my MS symptoms were so bad that I was losing my grasp of existence.
I know that I got the high dose. they have since stopped giving the high dose. I guess there is a good reason not to give the high dose. I did not realize that the people from phase II that had serious complications developed them well into the protocol, after the 2nd or even third dose. I thought that if i mad eit through the first few months then I had little chance of developing ITP, well that is certainly not the case.
I'll update once I get word from the hematologist next week on if I am back into normal platelet count range.
G
I know that I got the high dose. they have since stopped giving the high dose. I guess there is a good reason not to give the high dose. I did not realize that the people from phase II that had serious complications developed them well into the protocol, after the 2nd or even third dose. I thought that if i mad eit through the first few months then I had little chance of developing ITP, well that is certainly not the case.
I'll update once I get word from the hematologist next week on if I am back into normal platelet count range.
G
ITP ! ?
Grumpster! What happened at the hematologist? Do you still have your spleen? I think of you monthly as I get my blood drawn...Please keep us posted and I wish you well!
-kristin
(1st campath 3/08, 2nd 3/09...probably going to accept the 3rd....)
-kristin
(1st campath 3/08, 2nd 3/09...probably going to accept the 3rd....)
Hey there Kristin,
Yes, I still have my spleen, thankfully. The hematologist gave me prednisone at high dose to combat the attack on my platelets. It worked well, or is working well. My counts are back into the normal range and I have tapered from 60 to 50 to 40 to 30 to 20mg per day. Now 20 every other day. Hopefully in another week to 10 every other day and then god willing - off the steroids.. Whew... quite a while to be on that stuff, but better that a spleen removal anyday.
I am due for my 9 month follow up. I will discuss my potential 2nd treatment, but from all accounts by my hematologist and GP I likely will not be able to take dose 2 without risking a exponentially greater immune response and a mega platelet attack. I have asked the trial site to provide me with scientific data that is contrary to that, but I do not thinnk they have any. The coordinator at the site has said..oh you are fine for dose #2. that is fine and dandy for him to say, but he is not even a doctor and it is not his spleen on the line. We'll see how it goes. I'll keep posting with progress.
I am doing ok, but one of my nemesis symptoms (vertigo) that had subsided for a while is creeping back. I am battling that with vestibular therapy... no rest for the weary i guess... G
Yes, I still have my spleen, thankfully. The hematologist gave me prednisone at high dose to combat the attack on my platelets. It worked well, or is working well. My counts are back into the normal range and I have tapered from 60 to 50 to 40 to 30 to 20mg per day. Now 20 every other day. Hopefully in another week to 10 every other day and then god willing - off the steroids.. Whew... quite a while to be on that stuff, but better that a spleen removal anyday.
I am due for my 9 month follow up. I will discuss my potential 2nd treatment, but from all accounts by my hematologist and GP I likely will not be able to take dose 2 without risking a exponentially greater immune response and a mega platelet attack. I have asked the trial site to provide me with scientific data that is contrary to that, but I do not thinnk they have any. The coordinator at the site has said..oh you are fine for dose #2. that is fine and dandy for him to say, but he is not even a doctor and it is not his spleen on the line. We'll see how it goes. I'll keep posting with progress.
I am doing ok, but one of my nemesis symptoms (vertigo) that had subsided for a while is creeping back. I am battling that with vestibular therapy... no rest for the weary i guess... G
So true Loobie, sucks ass major!!
I really thought that I had regained a bit of footing in the race. Now, who knows. I would like to be able to accept dose #2 since I have clearly benefited from it. Im not running races or hitting the snowboard park like i used to before this crap qss disease, but I am doing better than I was pre-campath. I am really getting used to no-shots too. After ~7 years of shots I so like not taking that wicked stuff.
I choose to not be all that negative though. Who knows I could be a lot worse. The wheel of misfortune spins round and round and you never know when the gig is up. Anyway I am going in for 9 month assesment in December. I also just had an MRI from my regular neuro. Compared to 10/2008 MRI I have no new lesions and existing ones are stable. That is good news, but they did not look at my brain stem which is where I had some really concerning ones, the ones that are responsible for balance, gait, and of course VERTIGO.... Vertigo sucks so bad. Mine is mild right now and intermitent. If it becomes severe and constant I will start looking for a tall bridge.
I think I'll have a cold one tonight to celebrate something. I do not know what yet
I really thought that I had regained a bit of footing in the race. Now, who knows. I would like to be able to accept dose #2 since I have clearly benefited from it. Im not running races or hitting the snowboard park like i used to before this crap qss disease, but I am doing better than I was pre-campath. I am really getting used to no-shots too. After ~7 years of shots I so like not taking that wicked stuff.
I choose to not be all that negative though. Who knows I could be a lot worse. The wheel of misfortune spins round and round and you never know when the gig is up. Anyway I am going in for 9 month assesment in December. I also just had an MRI from my regular neuro. Compared to 10/2008 MRI I have no new lesions and existing ones are stable. That is good news, but they did not look at my brain stem which is where I had some really concerning ones, the ones that are responsible for balance, gait, and of course VERTIGO.... Vertigo sucks so bad. Mine is mild right now and intermitent. If it becomes severe and constant I will start looking for a tall bridge.
I think I'll have a cold one tonight to celebrate something. I do not know what yet
ITP 1 year later
How about now? A full year later? Campath has moved so far down the list!! How ya feeling, how are your blood counts, what drugs are you taking now?
I come on this site every few weeks to few months, when I start to think about whether or not to get another dose, and continue to ask the doctors about any new horrible info on campath? or wonderful stuff, besides the 91% who are disease free. Cause I'm in the 9%.
But it could be worse. I'm not bleeding to death
all the best!
kristin
I come on this site every few weeks to few months, when I start to think about whether or not to get another dose, and continue to ask the doctors about any new horrible info on campath? or wonderful stuff, besides the 91% who are disease free. Cause I'm in the 9%.
But it could be worse. I'm not bleeding to death
all the best!
kristin