Remember Me     Forgot Login?   Sign up   •  Web site Help & Info

!!! DISCUSSION GROUP RULES !!!

1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!

Promacta possible side effect

More
14 years 5 months ago #19648 by poseymint
Promacta possible side effect was created by poseymint
For the past few months I've been having symptoms of "peripheral artery disease" or "vascular ischemia" different docs have different names for it but basically its narrowed arteries going to my legs. The legs and feet aren't getting enough oxygen so symptoms are very pale skin (pallor), loss of hair on legs, hardened toenails, very smooth white skin.

I noticed it in August when my platelet counts spiked up to 107K after being on Promacta for 6 mos. but didn't connect it to Promacta. Talked to my hemo and she didn't think it was a side effect. Advised me to get more exercise, lose weight which is good advice and I'm making some changes.

It went away when counts dropped, then came back to a lesser degree when counts were around 40K. Counts dropped to 29K and my legs looked normal. My hemo then began to think, as I did, that it might be caused by Promacta creating lots of new stickier platelets. I was thinking I may have underlying artherosclerosis issues and Promacta was making that worse.

Today my plates are 20K range. Had a cholesterol test and saw an MD who examined me for peripheral artherosclerosis. She saw no signs of it, my arteries do not seem to be narrowed. Cholesterol looked fine, so that was good news. The MD thought it sounded like Promacta stimulated a spike in new platelets which sort of overwhelmed my system. Not that 107K is such a high number but all of those new platelets coming out at once may have caused my blood to be "sluggish" which in turn decreased the oxygen going to the skin on my legs.

So heck, thats disappointing, I thought Promacta was my answer. I've read everything I can find in the Promacta literature and it says nothing about this. I mean it mentions blood clots even at low platelet counts but not specifically these symptoms. Docs don't have any strong opinions, just watch and wait. So... will keep you posted of any future developments!

good health to all~ posey

Please Log in or Create an account to join the conversation.

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
14 years 5 months ago #19654 by Sandi
Replied by Sandi on topic Re: Promacta possible side effect
Posey - since it's a fairly new drug, there still might be side effects that have not been listed. Unless your doctor reports your problem, it still won't be listed as a known side effect.

Sorry you are having a compication.

Please Log in or Create an account to join the conversation.

More
14 years 5 months ago #19721 by gayk4
Replied by gayk4 on topic Re: Promacta possible side effect
My daughter, age 21, has been on Promacta since June. Her teeth are sensitive, so using toothpaste for sensitive teeth. I noticed that her gums are red just in the area right next to front teeth. Anyone else have this side effect? She asked her hemotologist why and he told her that was a question for her dentist, so I guess we'll check there.

Gay K

Please Log in or Create an account to join the conversation.

You’re not alone. We have answers! Contact PDSA to connect with life altering information, resources and referrals. 440.746.9003 (877.528.3538 toll-free) or PDSA@PDSA.org.

Platelet Disorder Support Association

Platelet Disorder Support Association
8751 Brecksville Road Suite 150
Cleveland, OH 44141
440.746.9003  |  pdsa@pdsa.org
The Platelet Disorder Support Association is a 501(c)3 organization and donations are tax deductible to the fullest extent allowed by law.

IMPORTANT!

The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.