prograf and tremors...

Mike. At 2.5 years post TP has bad tremors. Especially in his Hands. He can't do soup anymore! Or take out splinters. Or put that little tiny screw back in his eyeglasses. But. He'll take some inconvenience for saving his life.

Prograf
1mg am
,5 mg pm

Post Edited By Moderator (hep93) : 7/23/2013 10:46:50 AM (GMT-6)

I had tremors at first, but then my dose was lowered and they're gone. It also made my toes numb for a short time after it took effect. Now, that's gone as well.

@ Mae...thankfully, my mom is doing great! Although there have been many bumps in the road of recovery, and we expect more, she does enjoy life and is beyond blessed and extremely thankful for her new liver and donor. We were just curious regarding tremors post transplant. I have been staying off Google...I just come to the forum for advice and check up on the amazing people of this forum.

I understand that fatigue and tremors are "normal/typical", but I appreciate getting feedback from others who are post transplant or have experienced these issues. It really helps getting advice from the forum members and caregivers.

Mae, I know what you mean about breathing. It's been difficult to breathe ever since fluid started collecting in my lungs. I know I'll have to be drained again soon...but I won't have it done with just a local. But your asthma is treatable by less invasive measures. Feel and breathe better soon!

WD, your mom's Hecoria/Prograf dose is about "medium." I take 1/2 mg twice a day, which is low. I think the tremors stopped when I was taking just 1.5 mg a day. So hopefully, your mom's will cease, too, once her dosage is lowered more. This is something that is determined by her Prograf level when lab work is done. If it's high, they decrease it and vice-versa. Mayo likes mine to be between 6-7. It's been in that range for months, so my dosage hasn't been changed for a long while.

Also, I don't believe there is any correlation between tremors and tiredness, except maybe that the tremors contribute to the tiredness due to the energy expended in the tremors. I think the likelihood of that would be very low, though.

Hugs,
Connie

Brigham & Women's in Boston, David. And I want to go have a celebratory iced coffee to mark your anniversary!

I'll never forget when I first came on the scene, how you spent all that time with me on the phone and also in the forum, and you kept me grounded. If it didn't worry you , then I took that as a good sign.

So congratulations on your continued good health, you deserve it!

Hugs,

I visited people this weekend who were burning some yucky smoky wood and it really affected my respiratory system. Oh well, won't do that again!

Oh and Connie I'm so sorry you have fluid, I wanted so badly for you to catch a break and have a little peace for a change ;(

Mae, just posted elsewhere, glad you're all right. Brigham & Women's is just one of many terrific hospitals in and around Boston. We're really lucky to be able to choose from several of the best in the US. My first nurse practitioner who walked me through the first round of interferon/ribavirin in 2004 went to work at B&W, for the top hepatologist there. Now, she switched specialties and is taking care of geriatric patients. Maybe she'll be taking care of me (again) in another few years.

@ Mae...I hope your feeling better and are home from the ER.

@ Connie...make sure to update your TC on your condition as well as the junk your coughing up. Have you had a chest xray recently? I hope you feel better soon.

@ David...Happy Anniversary!!!

Yes I am Jane. Ty

Mae,
Odd, really. This caregiver has asthma too and a diagnosis of COPD. Maybe liver disease is a trigger????? [img]/community/emoticons/tongue.gif[/img]

I take a daily dose of Symbacort and VeraMyst and carry a rescue inhaler with me everywhere. If I smell smoke I'm out of there because I will pay for it in 5 minutes. Also mold and many plant materials. Smoke definitely.

When I had my allergy tests, EVERY prick raised a welt. Seems I am also allergic to preservatives. Must get everything preservative free...even Benadryl comes in an uncolored capsule if you look! The Walgreen's guy tells me when they get the flu vaccine in as they get about 10 shots preservative free.
When I get that feeling on my tongue or throat, my voice totally changes, and in a few minutes I can't breathe at all. I have a prednisone dose pack at home, I stay one ahead and start it and my nebulizer treatments even before I call the doc. If I don't get on top of it...it is ER time (again). I bought my home on the East Coast of FL because the west coast gets red tide and that smell sends me to the ER for the solumedrol injections.

In FL they have those pine forest fires. We evacuate the area. Bag packed and head to a motel out of the area.

Breathing is very important. Albuterol is my friend.

Carol

Post Edited By Moderator (hep93) : 7/24/2013 12:02:33 PM (GMT-6)

When I was in my teens, I was breaking out in hives and tested positive for everything through dog hair. We didn't go any further. The doc prescribed Atarax. I think it was probably stress, as it never happened again.

I do react pretty badly to bug bites and surgical tape...or any tape worn for a period of time.

I remember red tide in Sarasota. My family lived west of the Gulf, though, so I never smelled it. I just didn't go to the beach when there was a red tide alert. Usually, they would close the beaches.

Hugs,
Connie

WD, I think the tremors probably add to her fatigue. It does take a long time to recover from surgery...to get energy back. And if one has hep C, it doesn't return until after the HCV is treated.

Hugs,
Connie

@ hep93...I think the tremors definitely contribute to her being so tired. I do pray there is nothing else going on with my mom making her extremely tired. She doesn't have Hepatitis C...she has Hepatitis B.

@ Mae...so sorry about your sister inlaw. Keep us posted on how she is doing.