This is topic Anyone with platelet issues using Promacta? in forum Medical Questions at LymeNet Flash.


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Posted by Kris8 (Member # 12539) on :
 
Hello everyone,

I was wondering if anyone that has had issues

with their platelets has started taking

Promacta. My husband has been very sick with

Lyme for

many years many of his organs have been

deteriorating including his liver, bladder (he

has a nerve stimulator), and he was

diagnosed as legally blind a few days ago. IN

addition to all of this he developed extremely

low platelets and has been hospitalized many

times with internal bleeding. He has had three

to four treatments of IVIG with some benefit,

but his hematologist wanted to try this Promacta

drug. Since he started the Promacta his

platelets have gone up to about 124 and

hematologist is happy with it. However, he has

become so symptomatic as when he first developed

symptoms of Lyme (e.g., terrible joint pain,

neurologic problems, flue like symptoms and headaches, his eye pain is worse etc.)


Does anyone know if this could be a herx

reaction and/or if this Promacta stuff can help

with lyme? Or has anyone had the same

reaction. This seems to be a new drug and our

doctors do not know the effect it has on Lyme.

Any thoughts would be appreciated.


thank you.
Kristin
 
Posted by seibertneurolyme (Member # 6416) on :
 
My first question would be -- has he been diagnosed with any coinfections? From most of the reading I have done low platelets are more common with babesia and possibly ehrlichia/anaplasma or rocky mountain spotted fever or maybe even bartonella than from lyme.

My guess is that the increase in platelets is causing hypercoagulation. This could lead to headaches and eyepain.

Don't know anything about the med you have listed.

Hubby has had his platelets drop to a low of 135 I think and then increase to 300 within a couple of weeks this year. They keep jumping around all over the place since he has been diagnosed with anaplasma and RMSF and had sepsis from serratia marcescens.

The other possibility is that the platelets he does have are clumping together. Hubby had one blood test that they could not get a platelet count due to them clumping together. I think I put him back on vitamin e which seemed to help with that.

Many lyme patients have hypercoagulation. The best test for that is from hemex lab. It is the ISAC panel -- immune system activation of clotting.

But I do think that many of the things that decrease the hypercoagulation could be contraindicated in someone with low platelets.

I think the first thing to do would be to make sure he has been adequately tested for coinfections. Then I would probably order the Hemex test before adding any supplements.

Good luck.

Bea Seibert
 
Posted by seibertneurolyme (Member # 6416) on :
 
Pretty sure that wobenzyme would be safe to take with low platelets and it could help with hypercoagulation and act as an anti-inflamatory.

Bea Seibert
 


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