Promacta question

Maybe you could try to hang on a bit longer with Promacta. That is a lot of treatments to handle at the same time. Your counts are good for now!

DJ,

When EmilyK was having trouble getting her platelets stabilized on Promacta (while weaning from prednisone), the problem was that she was making changes that were too large, and not waiting to see the full result of one change before making another change. When she started making very small changes, and being more patient, her platelets stabilized beautifully.

You are responsive to Promacta, and I hope you will be able to get stabilized on it.

A conjecture:

I understand that platelets are sequestered in the spleen. I wonder if that sequestration also helps to stabilize platelet counts by storing excess platelets. If this is so, then perhaps asplenic patients would have a more difficult time stabilizing their platelet levels while taking Promacta or Nplate.

Does anyone have any experience pro or con?

I would be curious Rob about that question as well. I'm going to Charlottesville today at 2:30 to get a another opinion. I'll run it by that doctor. I'm thinking try 37.5 mg of promacta and see what that does. They are really pushing the Rituxan and have for years. I'm sure if I do get that treatment my anxiety level will be more of a problem then the actually side effects. I have just pumped myself up to refuse that treatment based on some others that had it many many years ago.

I agree the tapers have been fast but a lot of it was due to the count being so high...I've had a stroke in 2005 when they took my spleen out..so I'm extremely freaked out with a high count.

I also have done a time line and I was in a nice remission until I moved to a new house on the golf course. I spoke to the golf course supervisor and they did a mass spraying the end of March of Ronstar I came out of remission the beginning of April If I'm tracking this properly. They are spraying insecticides, fungicides and herbicides regulary. I hadn't even thought about this until a couple of days ago. I'm taking the information to this doctor and see if he thinks I'm chemically sensitive. I'm a realtor so I'll sell this quickly and move on to somewhere where the environment is calmer...just sucks I love my place. But I love my life more..

I really appreciate everyone's input. It is more then helpful right now!

I found this on this site...so I'm thinking this might be the reason I can't get this under control..

Environmental Hazards
Exposure to toxins and household chemicals can cause a drop in platelets in some people. Below is a list of toxins that have been documented to cause low platelets. You can find more information about environmental medicine and minimizing toxic exposure on Dr. Lisa Nagy's Web site. Check the NIH toxmap for toxic locations near you or local environmental sites such as the Environmental Health Watch.

Aromatic hydrocarbons

polyurethane10
toluene methylbenzene (Anisen or Toluol)
(smells like paint thinner, used in the many industrial processes including the production of gasoline and Coca-cola.)11
wood preservatives and solvents12

Insecticides, chlorinated hydrocarbons, and organic phosphorus compounds41

I looked up Golf course applications and organic phosphorus is a commonly used treatment. I'm amazed..The topic of golf courses can elicit extremely different responses from different .... However, if chemicals must be used, the following guidelines are recommended: 1. ... Use slow-release and/or natural organic fertilizers. The most commonly used fertilizers are nitrogen, phosphorous and potassium containing compounds.

I don't know if there is a blood test that would tell you if you concentration levels were high? Or if it's just a need to eliminate and see if it works.

So this is the new plan....doing IVIG next week to pull and hold my count hopefully for 2-3 weeks. Coming off of Promacta once the IVIG is in...tapering the steriods. Start Rituxan the week after 4 treatments. Anyone have any good results with Rituxan? I don't know why this drug freaks me out.

About 18 months ago, I came up with a theory of why my count always takes its biggest dives in August.

So I began thinking... My summer diet is about 75% or more fresh fruit. It's almost an addiction. But organic produce isn't in my budget unless the price is very close to the unorganic stuff.
So, I researched pesticide residue poisoning. Bingo... thrombocytopenia is a noted complication, although the literature talks mainly about acute poisoning from accidental overdose, etc. and not chronic low-level exposure like mine. Still... Was I onto something?

So I experimented. Last summer, I ate far less fruit, organic when I could get it and if not, the "low residue" varieties only. I ate no grapes, no berries, no apples - the worst offenders. Along came August again and its typical single-digit counts. Prednisone no longer kept a safe count, and I had to do something else. Doctor wanted Rituxan, but I felt the same as you about it. I'm not a fan of drugs with black box warnings... Not for myself, anyway. So I opted for NPlate. Having a tough time with it at the moment, or maybe it's the prednisone.

It's just anecdotal evidence, the only kind I have to offer. But I can tell you that for me, it wasn't the pesticides.

Most people do fine with Rituxan. IVIG has also had a black box warning, and Win-Rho....don't let that scare you.

I hope that plan works for you, DJ. The main concern would be hoping that IVIG lasts long enough.

I'm thinking it's not the pesticides as well. I spoke to my doctor and he said I've had this 21 years and lived in a lot of different areas and it still pops up no matter what my environment. I'm glad you had the same thoughts though..it's nice to see I'm not totally off track in my thinking..LOL!

I'm praying this works..I'm out of energy and that is not like me at all. I feel like so many others just defeated. Tired of the marry go round ride.

Thanks Sandi, it's easy to get freaked out reading all the good and bad and side effects and no effect on counts etc. I also hope the IVIG lasts long enough..years ago it would hold me for 3 weeks..but now I have no idea. It's seems what used to work has no lasting effect anymore.

Thanks so much for your support. I'll keep you all posted

Good luck!