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question regarding prograf...

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Posted 5/27/2013 8:51 PM (GMT 0)
Hi.

For those taking prograf/hecoria, did any if you experience a trembling feeling? My mom takes 2.5 mgs of hecoria and has been feeling shaky/trembling. Her TC said that this does happen and will subside over time. Any advice?

Also, regarding hair dye...when is it okay to dye your hair/roots? My mom is 5 1/2 weeks post transplant. She is not looking to dye her hair/roots just yet, but we are curious how long should she wait...3, 6, 8 months???

BTW...has anyone heard from Thing714??? I think he was going to be taking his dad to Mayo.

Thanks in advance.
Posted 5/27/2013 10:00 PM (GMT 0)
Hi, WD. If I recall correctly, I colored my hair (completely) about 7-8 wks. post transplant and was fine.

I've never heard of hecoria and couldn't find it on Rxlist.com. Are you sure you are spelling it correctly? I take Prograf (1/2 mg twice a day, for some months now) and the generic equivalent is tacrolimus.

In the first month after transplant, I had some shakiness, but think it was from CellCept or Prednisone...or both. Your mom is still early on after transplant. As meds are decreased and things settle down, she should feel better. Best for her to take her questions and concerns to her Transplant Coordinator.

Hugs,
Connie
Posted 5/27/2013 10:30 PM (GMT 0)
Hi WD,

I also didn't find anything on Hecoria and I looked all over...

Mike takes 1.5 and 1 mg of prograf daily. He started at 11 and 11 mg at transplant and weaned down over 2 years. He also takes Cellcept and has been on and off that one over time.

Please know that Mike believed his tremor was from Prednisone and was elated to be weaned off that after a few months.

But the tremor continued. He would get used to the prograf and the tremor would go away, they said.

But after 2 years, it has not.

The new thinking (OURS ONLY) is that a tremor is a heck of a lot better than dying, so if he has a tremor so be it. He is careful what he orders in restaurants and he is quite bad. Soups are a NO NO.

He was our family's go to guy for splinters and broken glasses....but no more. SAD. As I said.....a tremor, even a bad one, is better than the alternative.

I'm sorry to hear another is bothered by tremor also.

Some nights I can feel his whole body shiver in the bed. But mostly it is his hands.

Hugs,

Carol

Post Edited By Moderator (hep93) : 5/27/2013 7:36:15 PM (GMT-6)

Posted 5/28/2013 12:17 AM (GMT 0)
Frightening side effects, but the alternative is worse. When I first began taking prograf, I had shaky hands. It subsided and now my dose is lower and I have no tremors.

From the prograf website:
"The most common side effects of PROGRAF are: tremors (shaking of the body); high blood pressure; kidney problems; diarrhea; headache; stomach pain; trouble sleeping; nausea; pain; weakness or low red blood cell count (anemia); infection; constipation; low levels of phosphate in your blood; swelling of the hands, ankles, or legs; high levels of fat or potassium in your blood; numbness or tingling in your hands or feet; fever; or low levels of magnesium in the blood."
Posted 5/28/2013 1:23 AM (GMT 0)
Hecoria (tacrolimus) is an anti rejection medication it is the same as Prograf. Here is some information regarding it...

"Novartis announced on 3 April 2012 that it had launched a branded generic version of Astellas Pharma’s immunosuppressant Prograf (tacrolimus). Novartis’s branded generic is called Hecoria and has been approved by FDA for the prevention of organ rejection in certain kidney and liver transplant patients"

The reason I was asking regarding the trembling, is bc my mom is diabetic so the shaky hands makes it a bit difficult to test her blood sugar and give herself her insulin. I did check with her Transplant Coordinator and was told this is a common side effect and it will diminish within time.

@Hep93...they have taken my mom off the CellCept...it was causing her to have diarrhea (sorry). She takes Hecoria (tacrolimus) 2.5 mgs (2x daily). She has been on a tapering schedule for the Prednisone and is now on 5 mgs of prednisone until the end of June. She goes for blood work 2x a week.

@mamalama...mike took 11mgs of prograf? That seems high?

@David...thank you for the info regarding the prograf side effects.
Posted 5/28/2013 1:46 AM (GMT 0)
WD, thanks for clarifying the hecoria. I don't understand why there is no info about it in the usual places.

When I had the hand shaking, it was VERY uncomfortable. I can't imagine having to do blood testing with shaky hands. Is he also on insulin? I had steroid induced diabetes in the hospital, but it normalized prior to discharge. However, they still had me doing the blood glucose testing for nearly 2 wks. NO fun, especially with my Raynaud's disease, a circulation disorder. I've always thought it must be terrible to have palsy, for whatever reason. Carol, I'm so sorry to hear that Mike still has his tremor, but certainly better than the alternative. We all seem to have trade offs.

Mentioning diarrhea is okay. We see it a lot in the Laculose threads. I didn't have that side effect.

My tapering dose of Prednisone went from 5 mg to 2.5 before coming off completely. I was on it for 4 months, with a gradual taper. I think perhaps that dosing is an individual thing, just as Prograf is.

Hoping your mom starts to feel better soon and her side effects diminish.

Hugs,
Connie
Posted 5/31/2013 3:53 AM (GMT 0)
Thank you, Connie.
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