My Tysabri update

[Manzyb]

It's been 2 weeks since my first infusion. I can't say that I feel 100 times better yet, but I am showing some improvement. Last week I was so darn tired I could hardly hold my head up. The doc said that extreme tiredness can be a side effect from it. However, this week I have not been so tired. I have been to the gym every day and have noticed I do have more energy.

I don't feel great, but I do feel better than I was doing. My next infusion is on the 17th of this month! Hopefully it will bring on some more good.

 

[Miss Underestimated]

Hope it works!!

 

[Manzyb]

Thanks At least there has been some improvement even if its only slight. I'm still going to the bathroom a lot, but a lot of my nausea/vomiting has subsided for the most part.

 

[DustyKat]

Thanks for the update Amanda, it's sounding promising!

I so hope this works for you hun...fingers, toes and every darned thing crossed!

{{{HUGS}}} to you and Sadie bear, :heart:
Dusty. xxxxxxxx

 

[Leebie3]

wishing you the very best of luck!

ps: your sadie is GORGEOUS!!

 

[Miss Underestimated]

Is Tysabri another biological? I know there are so many new drugs coming out now.

Oopsie I followed the link and got a clue.

 

[Manzyb]

I think it is considered a biologic, but its different from Remicade/humira as it is not an anti-TNF it is an immunomodulator.

 

[Manzyb]

Well, I may finally be on the upswing!!

Starting a few days ago, I noticed taht I wasn't nearly as exhausted. Then I started to notice that my bathroom trips have decreased from 10-20 times a day to just about 5-10 times. I can eat and not get terrible stomach aches. I still do get stomach aches, but not nearly as bad.

I think I might finally be getting better! It is very relieving, I've been sick for so darn long.

 

[DustyKat]

This is so wonderful! I have been hoping so much that I would hear you utter those words Amanda! anda:anda:anda:

Long may it continue!

Onwards and Upwards. :heart:
Dusty. xxx

 

[Leebie3]

YAY Manzy!!!!

 

[Manzyb]

Thank you!

It has definitely been a long time coming! Now, hopefully I can keep myself feeilng better and better

 

[Avw]

Glad to hear you are doing well on it! My doctor was adamant about me getting on Tysabri, but I felt it was too risky considering my history of persistent infections. I've applied for the Stem Cell Transplant, but if they don't think I'm a good candidate for it, I won't have much choice about trying Tysabri.

Any updates on your progress?

Hope all is well!

 

[Manzyb]

hey there

I had my 5th infusion the other day. I'm not really doing all of that great. Still going to the bathroom about 10-20 times a day and recently have been getting the nasty nausea and vomiting again.

I'm having a colonoscopy in the morning to see whats going on. if things don't look too well in there, then its on to something else!

 

[DustyKat]

Thanks for the update hun...:hug:

Oh man Amanda...it breaks my heart to read that things haven't really improved with the Tysabri.

I hope more than anything the scope tells a different story! Good luck buddy...:goodluck:

Lots a love, :heart:
Dusty. xxx

 

[Manzyb]

Thanks Dusty!! Love having you in my corner

As for the Tysabri update Avw- it seems as though my Crohn's is in remission from the Tysabri. I have an ulcer near my anastamosis site from the surgery, but other than that, there were no visible signs of active crohn's! YAY!

Since I'm having problems, i had blood work come back saying that liver enzymes, lipase, and amylase are all elevated. They believe that the reason I am not feeling well is from pancreatitis, or some other problem. Not the Crohn's though!

After 13 years, i finally heard the word remission! Now to get everything else under control.

Keep us updated on whether you start it or not!

 

[Avw]

Congratulations!!

Sorry about the other issues though.. hope they can get it cleared up for you. How are you feeling otherwise?

 

[Manzyb]

Congratulations!!

Sorry about the other issues though.. hope they can get it cleared up for you. How are you feeling otherwise?

Still having lots of diarrhea (10-20times depending on the day), some abdominal pain, gas pains/bloating, nausea and vomiting (not vomiting all of the time, just every other day or so).

I'm still not having much energy either. I ended up losing 8lbs in 4 days this past week, I think some of that was water loss from the colonscopy prep, but I'm not sure about 8lbs!