New Doctor, Hospital stay & a blood thinner?

HOLA, ITP'ers!!

I've not been visiting much since I first signed up on here.

However, since then I've started Promacta at 50mg and 60mg of Prednisone. My platelets had dropped to 0 again.

I hate prednisone. I'm sure there isn't a human alive that loves the crap. Anyway, been on that since about May, I think...Somewhere around the 2nd month of Promacta I was put on 75mg.

My left leg started hurting BAD, couldn't walk. I was also having a REALLY hard time breathing. I have a history of blood clots because I also have May-Thurners Syndrome, which I have 2 stents for in my left Iliac vein. So, I thought, "Oh man...what if my leg is clotted again and it's gone to my lungs??"

Went to the ER - NO clots in the leg, but my lungs were FULL of LARGE clots. Apparently, my lungs were covered in them. Too many to count. I started laughing. I told them, "I'm so freakin' weird. I either clot too much or not enough."

I was kept on 60mg of Prednisone, 75mg of Promacta, 6mg a day of Coumadin, and a week of Lovenox shots. (now I'm on 8mg of coumadin)

Since then they've dropped my Prednisone I'm on 20mg now. Which is nice because I was starting to get Moon Face and the buffalo hump on the back of my neck. (plus, I've gained weight....this I do NOT care for one bit)

Doc (thank God for this man) said, "No one actually NEEDS 150 thousand platelets. If we can keep your count at 50 and your INR at a good range you'll be just fine." All the other doctors were talking about spleen removal and IVC filters and all sorts of other stuff.

The promacta just causes my platelets to be created and released while they are babies and too sticky and big.

Anywhoooo - that's where I'm at right now. I'm going a LITTLE crazy due to the long term prednisone at such high doses. But it's a fun delirium. I cry over nothing, then start laughing because it's literally over....nothing at all.

Hope everyone is well!

Hi Susan. Yikes! You sure have a lot going on.

That doctor is right. Everyone that takes Promacta should be dosed to keep counts around 50k. If someone is prone to clotting, they need to be very careful if they take Promacta. I'm wondering if you really even need Prednisone...Promacta might be enough to keep your counts in target range. Doing both is probably overkill. What are your counts?

Having ITP and a clotting disorder can be difficult to juggle and you really need someone who knows what they are doing. It's a delicate balance, but it can be done. You are going to have to really stay on top of this.

Research has shown that having a splenectomy can cause a person to be at higher risk for blood clots, so you might want to research that and keep refusing it.

After splenectomy, patients with ITP have a higher risk of venous thrombosis and sepsis than patients with ITP who do not undergo splenectomy.

www.bloodjournal.org/content/121/23/4782.abstract?sso-checked=true

Physicians should be aware of the risk of thrombosis and take care not to let the platelet count rise too high, Dr. Kuter said. "You shouldn't try to normalize the platelet count," he said.

www.medpagetoday.com/MeetingCoverage/ASHHematology/12103

Thank you, Sandi!

I feel the same and will always refuse the Splectomy. I really want to keep it. It seems it will do more harm than good.

The last time I was at the doctor my count was around 100. That was on 40mg of prednisone a day. I really think the Promacta and Coumadin will be a good combo to keep me level. I will be going again on Wednesday for a doctor visit and another CBC/INR.

I was put on Prednisone by my new hematologist when I went down to 0 the last time. He overreacted I think. He's been out of town and this awesome doctor that stated the 50 count remark has been seeing me since then. I want to keep him as my doctor but his office is regularly in Clearwater which is an hour and a half away from me.

I am going to make sure this "fill-in" doctor really gives my hematologist the run down when he hands his patients back over.

I do have a question for you, do you know if there are any threads on here regarding Auto-Immune disorders and Ketogenic Diet? I started looking into it today.

I don't remember any discussions about the Ketogenic Diet.

Good luck with your count and INR. I hope you can keep them in good ranges.