Just Bummed

[seaman728]

I posted wed about numbness and a tinkling sensation [neuropathy] and a spike in my bloodpressure.  Thur morning after taking my ribba,  I started feeling sick and confused.  I layed down for a while cause my leg and arm were tinkling bad.  That is the last thing I remember for a 8 hour strech.  I was rushed to the e/r, which I don't remember, had a cat scan which I don't remeber,  and was just released.  Mri, cat scan, ultra scan of both heart and arteries in my neck show I did not have a stroke or heart attack.  The Dr said I am going to wing it and said I think you had transit global ammensia.  My blood pressure at the e/r was 190 over 100.  Now what has me really bummed out is the Dr's at the VA said I have to come off treatment.  I called Roche labs support line this morning,  and the nurse said the dr's there will call me next week because this is very unusal and they would be very interested in talking with me.  According to the responce from my neuropathy post Mark1955, Isobella, Portann, Alijee ,1b11007 have had numbness problems also.  Sunday night would have been shot 17,  I quess I should listen to my Dr, but I have three more shots in the fridge.  I don't have results back yet for my vl from last week.  Probaly should not assume, but 12 weeks was down to 1,980, was fiquring I would be und at 16 weeks. ast 29 alt 20 the best in a decade.  I don't know wheather to try and convince my Dr's to let me continue or give it up.  Certainly do not need a stroke or heart attack.  I was healthy,  went to the gym daily and have eaten healthy since my diag.  What would you guys do if this shoe was on your foot???  It is sat night and have not talked to my Dr yet.  Thxs Ron

[Isobella]

I am not sure what your grade and stage are, but you asked what I would do if the shoe was on my foot.  Here goes:

I am stage 1 grade 0. If I did not clear at week 12, and was having major health repercussions from the tx drugs on SOC,  I would stop tx and wait for the new drugs.  Telaprevir may offer shortened tx times.  Boceprevir may do the same-with fewer sx.  

If I were stage 3 or 4...and not UND by 12 weeks-I'd do more research on extending to 72 weeks with a hard eye on the risk/reward ratio.  I would look into whether or not they could treat the high blood pressure while continuing tx.

I think contacting Roche was a good idea.  

I'm sorry you are having to go through this.  Please keep us posted.

Isobella

[sunshine585]

The amnesia may be unusual, but not unheard of. I know of a couple of others on tx this has happened to. One fellow, I met at a hep c workshop, was so freaked out by it, he started squirting his meds down the sink. I don't know how many weeks he missed but he relapsed. It used to happen to me. It scared me, not knowing what would happen ,if I was going to run down the street naked. I got used to it and nothing bad happened. I realized, even if you don't remember, you are still you, and you are going to do the things you normally do. Nobody seemed to have any answers for me, but they documented it. I've been off tx  almost 2 months, no longer have periods of amnesia, and I am und 4wks post.  I need to mention my episodes did not last as long as yours. I hope you're ok.

[portann]

Did you mean transient global amnesia? Usually this condition affects people younger than you are. Do you have a history of migraines?

One source says: "there's no easy way to distinguish transient global amnesia from the life-threatening conditions that can also cause sudden memory loss. In fact, sudden amnesia is much more likely to be caused by a stroke or a seizure than by transient global amnesia." (from http://www.mayoclinic.com/health/transient-global-amnesia/DS01022/DSECTION=when-to-seek-medical-advice)

I'm glad to hear the hospital ran so many cardiac tests on you. Your pressure was very high but shy of a hypertensive crisis:

"Hypertensive crisis affects upward of 500,000 Americans each year. Although the incidence of hypertensive crisis is low, affecting fewer than 1% of hypertensive adults, more than 50 million adult Americans suffer from hypertension."
(http://en.wikipedia.org/wiki/Hypertensive_emergency

You may also want to tell Roche about all the supplements you take when you talk to their doctor next week.

Sounds like you'd absolutely have to extend SOC to 72 weeks, since you didn't clear at week 12.

What is your stage and results of your baseline biopsy?

[Rockerforlife]

I have to say i would watch it....i dont know your whole story...but from this post....id say slow down on tx...you can always do the Boceprevir PI`s that are proving excellent results....from what i hear,,,they will be approved bt 2010....trials are still in progress...i myself would stop...just my opinion...sorry to hear your rough news...better days ahead