Scared, Tysabri question

[dontlika]

Hi,
I posted in the medications forum but not on the tysabri thread.

My husband has just been diagnosed and has his first tysabri infusion on Tuesday. He started having another flare, 6th cranial nerve palsy symptoms, last night.

can he have iv solumedrol and Tysabri treatment at once? Can he be on intravenous solumedrol again? He was on it 6 weeks ago 1,000mg per day for 3 days and a month ago he had 1,000mg once per day for 5 days. Is he eligigble for another course so soon.

He already has 6th cranial nerve palsy in his left eye. I am frightened of course about his vision and starting the tysabri. Would love an input.
Thanks
jes

[0485c10]

Yes he can have steroids and his tysabri infusion. I have read of many who did that. steroids weakens the immune system which makes a peron more susceptibal to virus. the fda has recoomended steroids not be used as a chronic treatment combined with tysabri, like monthly pulse steroids--but the fda has ok'd it for the treatment of relapses when tysabri is being used as the maintenance med. Your doc is kind of stuck between a rock and a hard place, tysabri needs to get into your husbands system to stop the relapses but steroids are needed to treat the relapses while they are happening now?

Can't predict how he will go, but i suspect it will be tysabri along with treating this relapse with steroids.

you can be aware that his immune system has been under attack with all these steroids. wash your hands often, don't let anyone with the flu, cold, sneezing, coughing around him for a while, make sure he is able to get enough rest, and he is eating healthy and drinking enough fluids

i hope tysabri proves to be all that you & your husband hope it will be.

[dontlika]

thanks for answering someone

Thank you,
Even not knowing everything it is helpful you were willing to share info you have. I am glad that they will allow tysabri with IV SM. I heard it was hard to get the infusion center to agree to both but they will if specialist insists.

The nurse, when we called yesterday di elude to the fact that the doc was going to be stuck between a rock and hard place because of the reasons you stated. So you were right on with that one.

Finally get the drug approved and now this hangup. oh well. Yes he has a hard time realizing how much the roids have wekened his immune system. I am concerened. His lymphocyte % is less than 9% when the low end of normal is a minimum of 18%. I have done my best to keep the house clean and was my hands and such. Hahah, we had good friends show up sick the other day. I did not know what to do or say. Any thoughts on this?
thanks
jes

[0485c10]

oh yeah and the big virus tysabri can cause pml has never occured before 8 months on tysabri when ty was used for the treatment of crohns disease and not before 11-12 months when ty was used for ms....(i think its 12 months, could be 12 doses in 11 months though?)

my guess is your husbands doc will do both steroids for the relapse and ty to slow the ms down, as pml is not a big risk in the early months of treatment and your husbands ms really needs to be slowed down!

[dontlika]

and thanks

0415,
that is good to know. Glad the risk in the first 8 months is not a factor and adding IV solumedrol should be ok right now.

That was my guess too....getting him on the solumedrol but also getting him on Tysabri a fast as possible. Good to know the date or outcome for either one might not be affected.

Thanks for that
jes

[ajroller1981]

The steroids can obviously as previously stated be used as a method to stop relapse with tysabri. I currently have been on it for over a yr. I have had 2 courses of steroids in the past yr for questionable flares. In regards to the PML I hope that ur husband has been tested for the JCvirus which would in turn lesson his chances of getting PML to 0 at any rate Tysabri has been somewhat of a miracle for me and my hopes and prayers will be it works the same for him.

[lindaincolorado]

Welcome to msworld I cannot help you with your question but saw you received good info I do know I have seen on this board that others when in a flare have been treated with steroids, their dr had to give the go ahead for the Tysabri infusion.

Hope your DH does well !

[dontlika]

THANKS

Thank you,
I appreciate all the answers. I seem to have a better grasp on it now, will keep infusion date and cross my fingers.

In the mean time, I assume this means he will have a highly weakened immune system? Keep things clean type, or stay away from people type?

linda, i am in southern CO. Hard to get treatment away from the big city, huh. definitely makes things interesting.

jes

[DancesWithPugs]

Just chiming in here for encouragement. While you can't count on this happening, I had the symptoms of my last relapse completely reverse itself within a month of my first infusion. In fact, I thought I was going into another flare since my right arm was going numb by the time I went in (I had two new cervical lesions), but everything quickly went away. Again, I don't want to give you false hope, but I can tell you that this med has given me my life back.

As for what you do regarding people coming to visit who have colds, I keep a supply of medical face masks at my house and I'll either wear one or ask them to put one on. It usually isn't necessary, but given your husband's numbers, I'd very much insist on it. They should be more than willing to do so, and hopefully his immune system will bounce back and you won't have to take such measures.

Let us know what they ended up doing, and keep us posted on your husband's health.

[AJM]

I have had 2 Tysabri infusions with no improvement. Does anyone know how long I should give it before deciding to discontinue treatment?

[0485c10]

it took about 6 months before i felt some improvement that held. i was depressed at first because i had unrealistic expectation of what it would do. betwen 6-12 months i was satisfied with my decision to go on tysabri. i was planning to stop at 12 months if i wasn't getting anything out of ty and at 12 month i decided i was. and stayed on it-30 infusion now.

[smokeycat]

AJM---
Not everyone on Tysabri sees "improvement". It is to keep the MS stable so we do have any worsening. Many people do improve though, I am one of the ones who did not. According to my MRIs, my MS has not worsened so the Tysabri is doing its job. Yes, I am disappointed that I'm not one of the ones that saw improvement but it is keeping it stable for now so I will continue on it. I was told that it took 6 to 12 months before most saw any improvement. Hang in there and I do hope you are one of the lucky ones.

[ru4cats]

I have had 7 infusions with the 8th next week. Like others, I also began to notice a positive difference with my 6th infusion. After my 6th, my MRI showed stability and no new lesions. I realized in the past week that my physical ability also feels "stable". There are times when I don't even think about having MS.