venoplasty and alemtuzumab

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

venoplasty and alemtuzumab

Postby gibbledygook » Thu May 03, 2012 2:34 am

I've experienced improvements in bladder control and myoclonus after two venoplasty treatments but after the new and seemingly permanent damage suffered during a recent pregnancy, I am considering the anti-CD52, leukemia drug, alemtuzumab. Unfortunately one of the side effects of alemtuzumab is idiopathic thrombocytopenia which causes very low platelets. I'm wondering if low dose aspirin would be contraindicated when using alemtuzumab. Does anyone have a view on using campath and low dose aspirin?
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
User avatar
gibbledygook
Family Elder
 
Posts: 1414
Joined: Mon Feb 14, 2005 4:00 pm
Location: London

Advertisement

Re: venoplasty and alemtuzumab

Postby ssmme » Thu May 03, 2012 6:20 am

I take a low dose aspirin every day and have done alemtuzumab three times. The last time was two weeks ago. Low dose aspirin has health benefits that outweigh the possible risks IMO.
Marcia
User avatar
ssmme
Family Elder
 
Posts: 351
Joined: Sat Sep 22, 2007 3:00 pm
Location: Lexington, KY

Re: venoplasty and alemtuzumab

Postby CureOrBust » Fri May 04, 2012 6:35 am

I applaud you on your drive to get better, and wish you the best!

Sorry, don't know anything regarding aspirin and alemtuzumab. :oops:
User avatar
CureOrBust
Family Elder
 
Posts: 2909
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Re: venoplasty and alemtuzumab

Postby gibbledygook » Fri May 04, 2012 6:56 am

Hi Cureo! How are you? Any joy in Oz with CCSVI or other treatments? I can't believe I've had 2 children since getting an EDSS of 6.5! I must be pretty mad. Now I've got to get well.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
User avatar
gibbledygook
Family Elder
 
Posts: 1414
Joined: Mon Feb 14, 2005 4:00 pm
Location: London

Re: venoplasty and alemtuzumab

Postby CureOrBust » Fri May 04, 2012 5:48 pm

I have had two CCSVI procedures here in Aus (one in Sydney, then one in Melbourne). No measurable improvements from either really. So I then headed over to Dr S in New York and had a little more thorough and aggressive treatment with IVUS. Still no improvement. I am now in a waiting game as far as CCSVI goes, in that I guess I will need for the science to catch up either way. Taking Gylenya, no noticeable benefits or side effects (is this a sugar tablet), but admittedly, no "relapses"; but I think I have simply progressed to SP over the past few years. Sitting on an EDSS of about 4.5, and now off to do my exercise.

I must be pretty mad
And I have always thought, some questions are best not asked...
User avatar
CureOrBust
Family Elder
 
Posts: 2909
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Re: venoplasty and alemtuzumab

Postby k6ristin » Mon Jun 18, 2012 10:59 pm

Aspirin is fine w/ the campath. (81mg aspirin is sufficient for anti-coagulation) I've had 3 doses and have 2 stents. I dont know what the recommendations for lemtrada will be, but for the clinical trial, our blood is tested every month for ITP. I'm browsing the boards this evening looking for pregnancy & ms information, and your statement about permanent damage post pregnancy terrifies me!
User avatar
k6ristin
Family Member
 
Posts: 76
Joined: Mon Mar 17, 2008 4:00 pm
Location: Florida

Re: venoplasty and alemtuzumab

Postby gibbledygook » Wed Jun 20, 2012 7:55 am

It's looking very much like the damage suffered during especially the 3rd trimester of pregnancy is permanent, alas. I'm afraid pregnancy has been completely the opposite of what the neurologists described but then I guess all their data is skewed to people with mild disease burden...
Cureo, that IS very disappointing. Maybe it has stopped progression and you'll imperceptibly improve? That's what I'm hoping from my trip to Sclafani.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
User avatar
gibbledygook
Family Elder
 
Posts: 1414
Joined: Mon Feb 14, 2005 4:00 pm
Location: London

Re: venoplasty and alemtuzumab

Postby CureOrBust » Thu Jun 21, 2012 4:12 am

I wish you the best from your trip to NY. Do not take me as an example of CCSVI treatment results, as I am in the minority from all reports; ie people that do not appear to respond. I do however remember reading about someone who didn't notiuce a difference until 3 months later, maybe I am just slower to respond, or maybe I would of been much worse right now had I not had CCSVI treatments. Either way, I have progressed slightly, although that may be partially because I have not exercised as much now that its getting colder here.

What makes you feel the damage you suffered is permanent? Over the years, although I have progressed further along the EDSS scale, I can remember various symptoms that I accrued that stayed for a few years, and thinking about it now, have basically resolved or minimised to an "acceptable" state.

Actually, it just occurred to me, have you ever tried 4-AP?
User avatar
CureOrBust
Family Elder
 
Posts: 2909
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Re: venoplasty and alemtuzumab

Postby gibbledygook » Thu Jun 21, 2012 5:29 am

I think the damage is permanent based on how I drastically improved after the delivery of Arthur. In fact I went back to how I was before the pregnancy. This time around the increased spasticity has remained and walking is much harder now than before this pregnancy. However it's still possible that I could improve especially as I have improved after both stenting and ballooning. I'm very much hoping that Professor Sclafani can see venous congestion which has not hitherto been investigated, in, for example, the left renal vein. My walking and spasticity has never really improved with anything and once disabled in this area it has been permanent.
Did Professor Sclafani check your left renal vein, your dural sinus, the innominate and sub clavian veins?!
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
User avatar
gibbledygook
Family Elder
 
Posts: 1414
Joined: Mon Feb 14, 2005 4:00 pm
Location: London

Re: venoplasty and alemtuzumab

Postby CureOrBust » Fri Jun 22, 2012 3:20 am

I was treated about 10 months ago, and I am sure he checked everything he was checking back then, but he is also learning and extending his checks every day.

As for him finding further veins requiring treatment on yourself, I had had two treatments prior to seeing Dr Sclafani, and a local ultrasound check which previously found CCSVI (ie prior to treatment), but could no longer detect it, and he still found a number of locations requiring treatment (more than two). So I would be more than surprised if he does not find similar undetected treatment "opportunities" on yourself, using the IVUS.
User avatar
CureOrBust
Family Elder
 
Posts: 2909
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia


Return to General Discussion

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service