High chromium/cobalt levels and ITP?

I haven't posted in awhile, but I had bilateral hip resurfacing with Chromium/Cobalt protheses. I contracted a gnarly case of ITP soon after. Coincidence? I don't believe so. Has anyone or know anyone who has high Chromium or Cobalt levels and ITP? My GP recently had a patient who had very high Chromium/Cobalt levels and his platelets are at 20K. We are investigating a correlation. Any feedback would be greatly appreciated.

Jerry

Hi Jerry,
My wife, Ellen, had both hips resurfaced in 2006 by Dr. Gross, using the Biomet device. She has not had excessively elevated chromium /cobalt levels, but they are higher than average due to metal-on-metal wear. I do not think this is related to her ITP. Many people have metal-on-metal resurfacings (Dr. Gross must be over 10,000 himself) and I do not hear of many others with ITP. I keep up with the resurfacing message boards. \

Anyway, would you trade your bionic hips for a chance to be free of ITP?

Jerry = Heavy metals can affect people in different ways and at different times. I posted an interesting video in the Natural Treatments section (Autoimmune Disorders Exploding) which talks about epigenetics and environmental factors.

Hi Rob:

We discussed this a few years back. I remember you talking about your wife. That's a good question! It depends upon the options available to me. I would trade under the right circumstances. ITP potentially shortens your lifespan, whereas hip resurfacing will probably not kill me, unless it happens in surgery. I'll let you know if I ever get the opportunity to decide. Thanks for getting back to me. Hope your wife is well. God Bless!

Jerry

I remember that discussion well, Jerry, just didn't connect it with your name. Nice to have you back!

Jerry:
Most people with ITP live a normal life span. If anything, long-term treatments can shorten it rather than the illness itself. I wish I'd had that insight when I was diagnosed. I would have done things differently.

I have titanium in my neck and worry about that too.

Hi Sandi:

That is exactly what concerns me! It's N-Plate and Cyclosporine that I take that will shorten my lifespan. But I have no choice presently that I know of. My platelets crater without N-Plate!!

Jerry

Hey Sandi:

Where is that video you mentioned? I can't seem to find it. Thx!!!

This is it (below). It's titled "infant Immunity and Pregnancy", but most of it is about how the things you do affect the immune system which applies to anyone. The doctor talks about potential triggers that cause harm on a cellular level which can affect a person for life. If the topic interests you, you could take from that and do some further research. I actually love this woman; she has done nothing for the past 8 years but research every single day. I've seen all of her videos.

www.youtube.com/watch?v=ElI5q0BWKv0

Hi All:
I haven’t posted for almost a year. After 4 years of trial and error, I am now very stable using a combination of 125 mgs. of Cyclosporine daily with weekly shots of N-Plate at a very low dose (41 mcgs). My platelets are steady at a range of 180-220 for approx. 12 months. I was even able to take a European vacation for over 30 days. I credit this combo to Dr. Marc Zumberg at the University of Florida. At my last post, I mentioned my GP had an ITP patient that had high Cobalt levels due to working with catalytic converters without a mask/hood. The patient is now in remission as his cobalt levels dropped after stopping the work on the CC’s. My GP and I believe this is strong impirical evidence that the Cobalt is causing my ITP. However, only solution is to replace the metal hips with something else and this is only empirical. There is no assurance that the surgery would work. I don’t like being on the drugs so I may at some point investigate surgical options. I need to have a reason other than “it might work”. Any further insight or similar circumstances would be appreciated.

Also, I have two other topics to discuss:
1. Since I have only taken 41 mcgs. weekly of NPlate for almost a year, this means that I waste 209 mcgs. of NPlate weekly or 84% of the minimum vial that Amgen offers. The waste of such an expensive drug ($6500.00 per week) is very upsetting, but Amgen does not seem too concerned.
2. I have just gone on Medicare with the AARP UHC supplement. As it turns out, in order to have the co-pay reasonable, I have to have NPlate ordered under Medicare Part B, not RX, and it has to be administered in the office. I am an RVer and will be gone for two months this summer, so it will be impossible to have the drug administered at my doctor’s office. If I have to buy the drug under the RX Supplemental Insurance plan I have, the co-pay will start at 33% of $6500.00 (weekly) up to $5000.00 max and then a 5% weekly co-pay after that. It becomes similar to having a mortgage. Obviously, I will have the doctor order it under Medicare B.

If anyone knows of work arounds to the above 2 items, please respond.
Thanks

Jerry

Jerry:

I'm not sure how to cut back on the expense, but would it be possible to do that if you lower the N-Plate dose? Is there a smaller vial? Your counts are over the recommended limit for N-Plate according to the manufacturer. I know you've been stable and might not want to mess with dosages, but it might be possible to lower the N-Plate dose and get off of Cyclosporine completely. I wouldn't want to be on that long-term either.

Nplate® is used to try to keep your platelet count about 50,000 per microliter in order to lower the risk for bleeding. Nplate® is not used to make your platelet count normal. It is not known if Nplate® works or if it is safe in people under the age of 18.
www.nplate.com/?utm_source=bing&utm_medium=cpc&utm_campaign=BND%20-%20Nplate%20DTC%20-%20Decision&utm_term=nplate&utm_content=Brand%20-%20Exact&gclid=CNncjYPw-dsCFUH1swodlVQLyg&gclsrc=ds&dclid=CKiekoPw-dsCFZK5yAodhioIpw

Jerry, l can throw up, errr ahhh I mean, throw out a few ideas.
First off. That Cyclosporin and Nplate combo sounds like row 3 and row 4 antibody combination in my treatments table . The Cyclosporin neutralizes the row 4 pathway and the very low dose of Nplate neutralizes the row 3 pathway. One study suggests that most people don't have row 4 antibodies in isolate. That row 4 combined with row 3 is more common. Hence the need for doctors to stumble on this drug combination you are taking for a good number of folks. That is the current state-of-the-art. Blah.
You are not alone with good doctors. 'DrBean7218' takes Cyclosporin and Promacta too. His Cyclosporin dose has been as low as 50mg. He keeps crashing when taking Pred out of the picture though, which suggest an additional factor involved.

On Cobalt. Sounds like a reasonable culprit. It also sounds reasonable that they were drilling on your hip, some fragments got cleared by your immune system, and that triggered row 4 (megakaryocyte/bone) antibodies. LOL, there is no way to ask your immune system what is bothering it. Need a few more years for medical science to get there.

On Nplate. It takes a large dose of either Promacta or Nplate to overcome row 4 antibodies. As you've mentioned before, Promacta (alone) wasn't potent enough. But you've got Cyclosporin now. Is it possible to just switch low dose Nplate over to low dose Promacta? Don't know the insurance options with that. Myself, I am row 3 and only need 12.5mg of Promacta - the lowest dose offered of the pill.

Also, since you're a guy, you might consider replacing Nplate with Danazol. That brings the possibility of remission into the picture.

Did I cover all the bases?

[Edit] Left one thing off. The FDA has now approved Tavalisse, aka Fostamatinib. AFAIK, Tavalisse can replace Cyclosporin. In which case you'd likely still end up with a combination drug treatment. The combination Tavalisse and Nplate/Promacta. I'm fairly certain that Tavalisse is far safer than Cyclosporin though - especially long term.

Hi Sandi:

Yes, I am aware that my current platelet range is well above the suggested use of NPlate, but currently my hemo has taken the stance that if it isn’t broke, don’t fix it. It was a four year struggle to get it right, so I have been happy to have stability, but now may be time to improve those numbers too. I am currently at 41 MCGS shot each week. The smallest vial Amgen makes is 250 MCGS, so as I said, 86% is wasted. There is no way to separate the powder and then reconstitute for sterility sake. I have thought about the fact that if they made a smaller vial, it would be less expensive (I should only pay for what I use), but that’s another discussion. 41 is the lowest I’ve ever been on and it amounts to .082 ML which is tiny. We have not tried a smaller dose of cyclo yet and that may be the best route from here.

Thanks for your response as it is making me think forward.

Jerry

Hi Hal:
Promacta did not work for me. Have never tried Danazol. Right now, I am on really low dosages of both Cyclo and NPlate and I am very steady. One thing I failed to mention is that I also have LGL leukemia, so the cyclosporine helps with that also. The LGL leukemia has never affected me much so it is a secondary concern to the ITP, but my hemo likes the combo for my combo disorders. I seem to do everything in combo; two hip resurfacings, two autoimmune disorders etc. LOL! I am going to reach out to Dr. Zumberg again as I haven’t been to him in awhile. Maybe the Cobalt has nothing to do with ITP (although I suspect it does as I contracted ITP the year after my last hip resurfacing). Since LGL leukemia patients almost always have an autoimmune disease in conjunction with the leukemia, maybe that is how it became manifest. Autoimmune disease seems to run in my family as my mother and sister both had scleroderma. Thanks for your response, I think I have a solution for my Medicare issue with NPlate but I was just wondering what other people do? Do you ever go to the PDSA conference?

Jerry