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TOPIC: Please read and respond to this unusual ITP story

Please read and respond to this unusual ITP story 5 years 4 months ago #41486

  • gspaniol
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  • I contracted ITP in 2012, and as of 10/15/2018, I have been in remission. I thank and praise God! Please contact me if I can help you!
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I was diagnosed with ITP in 12/2012. In this time, the only therapy that has kept my platelets up is NPlate and now that seems to be developing a resistance. My next step is IVIG. I'm also trying some alternative therapy when I'm stable, but I have stopped recently when the NPlate started to show resistance. I also had hip resurfacing in 2010 and 2011 and then got the ITP in 2012. I have Chromium/ Cobalt prostheses in both hips and my levels of Chromium/ Cobalt are elevated but not to a level of concern from my surgeon. I happen to think this was the start of my problems and may be the trigger that started ITP. I would like to know if anyone has ever heard of anyone that developed ITP as a result of similar surgery and/or from Chromium/Cobalt allergy/poisoning. Your reply would be appreciated.

Jerry Spaniol

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Please read and respond to this unusual ITP story 5 years 4 months ago #41488

  • Rob16
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Hi Jerry. My wife, Ellen, has ITP and also had hip resurfacings in 2006. That was before resurfacings were even FDA approved. Her ITP did not show up until a year ago. I am not familiar with any connection between ITP and elevated chromium and cobalt levels, nor am I familiar with any other autoimmune issues.

If you are really curious there is an exceptionally good Yahoo support group just about resurfacings, and you could pose the question there. Members only, though.
groups.yahoo.com/neo/groups/surfacehippy/info
You might ask the question regarding autoimmune disorders as well. I will do a quick search on their search engine and see what comes up...

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Please read and respond to this unusual ITP story 5 years 4 months ago #41489

  • Rob16
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Well, the results are in. Of almost 10,000 members on the hip resurfacing site, there have been three reported cases of ITP in 14 years, including Ellen. That is certainly much higher than the rate in the general population. Whether there is causation is another matter: generally hip resurfacings are necessitated by arthritis, and sometimes by steroid use for other conditions, and autoimmune conditions tend to strike the same people, so it could be that the resurfacings and the ITP in some people are caused by a tendency toward autoimmune conditions.

Exit question: Would you trade in your bionic hips to be rid of ITP? Ellen is in Spain right now having the time of her life with her daughter, instead of being in a wheelchair, so I think I know what her answer would be!
The following user(s) said Thank You: gspaniol

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Please read and respond to this unusual ITP story 5 years 4 months ago #41490

  • GhostRider
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I would say that surgery does not cause ITP, its more that it revels it.

I had my first Knee surgery when I was 17 and afterwards I needed my Knee draining 3 times but no doctor said anything.

When I went for my second knee surgery 6 months later (other knee) I was in hospital for 4 days due to the bleeding.

I actually thought the surgeon had done something wrong however it was because my platelets were low (but not low enough to requirement treatment). This was the beginning of me being diagnosed with ITP.

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Please read and respond to this unusual ITP story 5 years 4 months ago #41491

  • juliannesmom
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At least one hip manufacturer has recalled some of its products for the chromium/cobalt issue. I assume your doctor has discussed this with you, but assuming isn't always good.
Norma

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Please read and respond to this unusual ITP story 5 years 4 months ago #41492

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I had to have a titanium rod placed in my cervical spine two years ago. Prior to the procedure, I did some research on the possibility of autoimmune reactions to the titanium. I couldn't find anything, but was aware of the possibility since I have two autoimmune disorders. I realized that I didn't have much choice because without the surgery, I had a high risk of being paralyzed.

Ever since the link between silicone breast implants and scleraderma came out years ago, I've been apprehensive about exposing my body to any internal foreign substances. When there seems to be no choice in the matter though, you do what you have to do. I believe that if the body can reject organ transplants, it can also attempt to reject implants in the form of an autoimmune response.

I agree with Rob; it could be that the resurfacings and ITP in some people are caused by a tendency toward autoimmune conditions. It's probably the genetic propensity toward autoimmune disorders that triggers an autoimmune reaction in some people. There would be no way to know that ahead of time and it is certainly not a known risk for obvious reasons.

Not much you can do about it now and there is no real way to prove the connection. All you can do is keep ITP under control the best you can and hope for remission at some point.

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Please read and respond to this unusual ITP story 5 years 4 months ago #41493

  • Rob16
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The recall was for the DePuy ASR, a lesser used hip prosthesis. The problems they were having were limited to the immediate hip area and resulted from excessive metal wear, and were accompanied by very high chromium and cobalt levels in the blood. Problems related to metal ions with other manufacturers' prostheses are rare uncommon and usually result from poor alignment of the prosthesis. Periodic blood testing for cobalt and chromium is part of standard aftercare; if all is wee, levels rise moderately the first couple of years, then should decline as the prosthesis is "broken in".

To anyone considering hip replacement: please do not be scared off by all of the attorneys advertising lawsuits for hip resurfacing. For many hip patients, resurfacing remains the best option available. Feel free to private message me for more information.

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Please read and respond to this unusual ITP story 5 years 4 months ago #41494

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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This is interesting. My Mom is going to need a hip replacement very soon. She just broke one hip in January and the other one is bad now. I guess I'd better research this before she does it!

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Please read and respond to this unusual ITP story 5 years 4 months ago #41496

  • Rob16
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If she has poor bone density then resurfacing is not right for her.

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Please read and respond to this unusual ITP story 5 years 4 months ago #41497

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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She does. She has Osteo. She will need a total replacement. I need to research the types of replacements available.

Ha, forgot to mention this. Since I was concerned about a reaction to the titanium, I mentioned it to the doctor's office. Having Lupus, my body tries to reject it's own parts, so it seemed important to see if I might react to the titanium. Their office lent me a piece of titanium which I taped to my leg for a week. I had no external reaction, but I know that would not exclude an internal reaction.

I'm glad that Ellen is off having fun! Good for her!

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Please read and respond to this unusual ITP story 5 years 4 months ago #41498

  • Rob16
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Titanium rod? Wow, that's serious. What HAVEN'T you had happen to you.
Sandi, you have had so much taken from you and still have so much to give.
You humble me.

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Please read and respond to this unusual ITP story 5 years 4 months ago #41501

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I had spinal stenosis. An MRI showed that a cervical disk/bone spur was buried halfway in my spinal cord. A sudden jolt or fall could have caused the bone spur to sever the cord. Honestly, that was one diagnosis that I wasn't all that upset about. It was one of the few problems I have that could actually be fixed, although I was left with permanent residual muscle weakness due to nerve damage. It's a fairly common diagnosis and procedure.

There are a LOT of things that have not happened to me! I'd like it to stay that way. :ohmy:

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Please read and respond to this unusual ITP story 5 years 4 months ago #41509

  • juliannesmom
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I am an attorney (and proud of the good I've done for many people) and I'm not advertising. Just thought I should bring it up. I cannot leave my lawyer head, and what it's learned, behind when I read these postings. Anyone with a hip replacement and elevated metal levels in the blood should be aware of the reports and the need to be monitored. The problem is indeed uncommon in hips other than the recall, and no patient who needs a hip should be scared off over one innovation that turned out wrong. I think, however, that autoimmune disorders in the presence of foreign objects/substances is a link that should not be ignored. And, yes, I'd accept the risk of an autoimmune disorder, with the need to be monitored, rather than be crippled by a hip that could be replaced with a fairly routine procedure.
Norma

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Please read and respond to this unusual ITP story 5 years 4 months ago #41512

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I agree 100%, Norma. I'd guess though that the general population does not know about that risk unless it happens to them. It should become part of the risks discussed prior to surgeries. Since it probably doesn't happen often and many doctors do not even know about it, it will probably continue to be ignored. Autoimmune responses can occur so long after the surgeries that it's difficult to make the connection.

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Please read and respond to this unusual ITP story 5 years 4 months ago #41513

  • Rob16
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Norma, when you refer to "one innovation that turned out wrong" it is ambiguous whether you are referring to the recalled DePuy ASR (AKA "Stryker") and Zimmer Durom prostheses in specific or metal-on-metal (MoM) hip resurfacing in general. MoM hip resurfacing as a substitute for total hip replacement (THR) was not a poor innovation, but the DePuy and Zimmer models were poorly executed. Many attorneys blame MOM hips in general, including MoM resurfacings, and this is just plain wrong.

All hip prostheses have failures. MoM hip resurfacing has the best long term outcome of any hip replacement when performed on the right patient with the right device in the hands of the right surgeon. Ellen's surgeon, in his first 1000 procedures, had a revision rate (i.e., requiring replacement) of just 1.6%, a fraction of the failure rate for standard "total hip replacement". His revision rate due to adverse metal wear was only 0.2%; this is consistent with an Australian Registry 2008 study of 6773 resurfacings.

Chromium and cobalt are natural occurring in the human body. Moderately elevated ion levels are expected and tolerable, but should be monitored regularly to check for highly elevated ions, a sign of trouble.

The most visible product liability attorneys claim that the problem is with all MoM hip devices. Just as some unscrupulous attorneys should not give all attorneys a bad name, the same is true for MoM hip resurfacing prostheses.

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Please read and respond to this unusual ITP story 5 years 4 months ago #41515

  • Sandi
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Well Rob, you'll be my go to man when I need advice about my Mom's hip replacement. You just earned it.

I just saw a blurb on TV yesterday about chromium, cobalt and nickle. It said that many cell phones are causing allergic reactions for people due to the metals. People get unidentified rashes and have no idea what is causing it. If it can cause problems outside the body, just think what it can do inside.

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Please read and respond to this unusual ITP story 5 years 4 months ago #41519

  • Rob16
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Sandi, I know much less about total hip replacement than I do about hip resurfacing.THR is less technically challenging than resurfacing; still, you want the best darned surgeon you can find - one who has done more than a thousand hips.

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Please read and respond to this unusual ITP story 5 years 4 months ago #41526

  • juliannesmom
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Rob, I was referencing only the DePuy recall (didn't know about Zimmer), but I generally refrain from mentioning brand names in any post online. And, no, I'm not advertising to get hip cases. That's not my line of work. The good attorneys I know who do that work are honest, decent, folks, who do not attack nor criticize all MOM hips. Yes, there are slimy folks in all lines of work, but I get really sick of hearing folks tell lawyer jokes at cocktail parties. They are full of it until something bad happens in their family (or even good things, like adoptions) and they need one. I've spent 25 years helping many poor and abused people, including sexually abused children, but, outside my work, as soon as someone learns I'm a lawyer, they jump to their prejudiced conclusions.
Norma

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Please read and respond to this unusual ITP story 5 years 4 months ago #41527

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Norma:

I worked with over 150 different attorneys for more than 17 years and I must say, I liked most of them. They have come in handy for me personally several times with special favors, so I wouldn't tolerate lawyer bashing here!

Rob:

We already have a fantastic surgeon who handled her surgery when she broke her hip in January. He has en excellent reputation. I'm just confused about the type/brand of materials that would be used.

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Please read and respond to this unusual ITP story 5 years 4 months ago #41568

  • gspaniol
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Rob:

Thanks for looking into it so deeply. Just got back from camping over Memorial Day weekend. No, I'm pretty active and don't want to stop. But, my ITP is not responding right now to NPlate and my wife and I are probably going to have to cancel our 30th wedding anniversary trip to Europe if I can't get it under control. Going to the doctor today to see where I'm at. Thanks.

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Please read and respond to this unusual ITP story 5 years 4 months ago #41570

  • gspaniol
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Rob and Sandi:

I had Smith and Nephew BHR done by a very competent surgeon that had done many. No recalls or issues with Smith and Nephew BHR. I do have elevated Chromium/Cobalt but it is within the THR limits. it just seems so coincidental. Now, your comments are most likely right in that my mother had Schleroderma and so does my sister. My Mom died of drug induced aplastic anemia! The autoimmune issues definitely run in my family. Hey Sandy, I'm sure you've answered this before many times but was your remission of ITP "spontaneous" or do you attribute it to some complementary treatment you were doing?

Jerry

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Please read and respond to this unusual ITP story 5 years 4 months ago #41572

  • Sandi
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Jerry:

I have an unusual story too. I was diagnosed with ITP in 1998 and for 5 years, struggled with low counts and was on and off of Prednisone. I'd tried Win-Rho and Danazol which didn't work. Rituxan was new on the scene and in 2003, I had four infusions. I ended up with serum sickness but was misdiagnosed in the ER. The doctor told me that I had a virus even though I repeatedly told him about the Rituxan. Anyway, my counts responded and I was treatment free for 13 months. When counts dropped, I went for Rituxan not knowing that I should not have used that treatment again. One week later, I was hit with serum sickness again, and it was much worse that time. My Hemo diagnosed it when he was called to the ER.

My counts responded to that treatment and I was over 150k. However, I could not seem to get over the serum sickness and continued to have joint and muscle pain. Serum sickness was treated with Prednisone and I couldn't get off of it due to the anti-inflammatory properties that it has. Something was definitely wrong but tests run by a Rheumatologist couldn't confirm anything. A year and a half later, tests finally confirmed Lupus. (Earlier tests did not show anything unusual, I'd been tested in 1998 and again from 2004-2006. It can take time for some disorders to develop).

After that last Rituxan, ITP stayed in remission. I hit the 60's twice but counts rebounded both times. I don't know if it was Rituxan that did it or the fact that I've been on Prednisone non-stop since then. It could also be that treating Lupus caused ITP remission. ITP can be a symptom of Lupus so apparently, I was probably destined to acquire Lupus at one point and just needed a trigger. Serum sickness was it.

I'm sorry about your family history of scleraderma. That is one scary disorder. Since you do have a family history of autoimmune disorders, it's not unusual to see different disorders in family members. Anything can trigger them, including trauma to the body such as a surgery or illness. How long have you been using N-Plate? Sometimes it takes time to get a stable response.

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Please read and respond to this unusual ITP story 5 years 4 months ago #41577

  • gspaniol
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Sandi:

Thanks for responding. I was diagnosed with chronic ITP in 12/2012. I have been on and off NPlate since 1/2012! I tried Promacta for a few months late last year but it gradually didn't hold over a sixth month period. I went back on NPlate and have done well on it until recently but my Doc has been titrating up to a higher dosage (now at 8 out of 10 Mgm/Kgm, 10 being Max dosage). Just got back from Doc appt. and platelets up to 19,500 from 13,500, so it is an improvement. He was contemplating putting me on IVIG but will hold off for now and I got same dosage today as last week. Was looking and trying Chinese medicine (Accupuncture, herbs, etc.) but got off them when the NPlate started to fail! Don't know what to try to get to remission. My sister's doctor said stay away of Chinese herbs if you have an autoimmune disease. My Chinese person says nonsense. I eat a very good diet, work out regularly and do all the right things but I am contemplating an even stricter diet. I am going to Arizona and am going to go to the Arizona Center for Integrated Medicine to see if I can get some advice from MD's that also use other treatment options. We'll see how that goes. It appears that the Rituxan worked for you. God Bless! I had Rituxin infused last April (before getting my spleen out) and it didn't do a thing. So far, NPlate is the only thing that has worked for me. Scleroderma is nasty. My sister did an alternative treatment using low dose antibiotics 30 years ago and it saved her life (she takes it every day, she's now 74!). This treatment is still not generally accepted by the medical community and it was discovered by an MD. I read about many different people's experiences on this website but am skeptical to do too much without my Hemo's approval, but it also seems many people (such as Joan Young) only got relief from alternative treatments (I'm reading her book now). Lupus isn't easy either so I sympathize! Your input is appreciated! I'm just a person looking for a solution, like everyone else. Thanks for your time.

Jerry

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Please read and respond to this unusual ITP story 5 years 4 months ago #41602

  • Rob16
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Jerry, I hate to see you cancel your trip. You did not mention whether you respond to steroids. Ellen just got back from eight fabulous days in Spain. Her platelets had dropped to around 20k just days before her trip. Because she is responsive to steroids she was able to confidently take a steroid pulse the day she left, and she was fine. Her hematologist wanted her to take a high dose dexamethasone pulse, but she opted for a milder prednisone four day pulse of 40/30/20/10 mg. It all depends on how predictable your response would be. If you do decide to go, I recommend the trip insurance just in case.

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Please read and respond to this unusual ITP story 5 years 4 months ago #41607

  • meredithjane
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Hi Jerry,
Is the Arizona Center run by Dr. Andrew Weil? I have read his books & browse the website regularly. Interested to know how you get on.
I am currently reading Dr. Bernie Siegel's books - & taking deep breaths while trying to balance 'life'.
Best wishes from Down Under,
mj

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Please read and respond to this unusual ITP story 5 years 4 months ago #41615

  • gspaniol
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Hi Rob:

I don't respond to steroids. Been there, done that. I only respond so far to NPlate. I responded early to IVIG when I first went in the hospital in 2012, but haven't been on it since. That is what my hemo's want to do next (I have two hemo's). My insurance will cover me overseas on a reimbursement basis. I will know in a couple of weeks whether I will go. Will let you know.

Hi MeredithJane:

Yes, the clinic is run by Dr. Weil. He doesn't meet with patients. He is the director of the center and they train MD's in integrative medicine. It is affiliated with the University of Arizona and I am an alum. They don't appear to have any hemo's that have gone through the training so I am asking them for guidance. I'll let you know.

Jerry

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