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TOPIC: New to ITP, my story so far...

New to ITP, my story so far... 2 months 5 days ago #67468

  • Toby-Wan-Kenoby
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Diagnosed in July. Was traveling to see the total eclipse in Chile and before left I saw a few red spots on my toes. Came back a few days later with my leg covered in red spots. Was sent to the local hospital with a count of 1 giga/l.
I live in Switzerland. Receives some immune globulin and dexamethason. Count went up to 50k and back down to 3k. Have done 3 cycles of Dex and when charting the count they follow the exact same path. High on day 11 after starting the 4 day 40mg Pulse treatment. Then rapid decline to 3k again. One cycle I had a second high up to 62k on day 19 but then declined again to 10k.
Seems like Dex is doing nothing other than a short term spike for me. I also had a bone marrow check and all is well on that front. Full body CT tomorrow. But don’t expect anything being wrong with me.
Here the interesting thing. I had broken my ankle in February and had an operation that also introduced a stainless steel plate and 11 screws to my ankle. The healing of the operation scar was very slow by my standards. So I assume that my ITP started shortly after the operation but was undetected from February to July.
I was tested in January during a routine check at 199k and later with the broken ankle at 170k. After that I was not tested until the 1k incident.
I suspect some connection between the operation and the immune response. I am having the stainless steel tested via a LTT Test if my blood reacts to it. Blood was drawn today. Results in 3 weeks. I am planing another operation to extract the metal and see if that does anything. Hopefully later this month or at the start of Oktober. My hematologist is always worried at 3k count but I only get some petechia. So I refuse treatment.
He is applying for nplate as a second line therapy. I will consider after the operation to get rid of the metal.

For now I am not sure where this all takes me. Has anybody ever heard about an immune reaction like ITP after an operation?
I did receive heparin after the operation but I am told it can not be HIT as I have no heparin in my system now.

I will be updating as I get more info. Thanks for your help.

Tobias

edited for spelling
Diagnosed 7/2019 let the fun begin...

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New to ITP, my story so far... 2 months 4 days ago #67473

  • Hal9000
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Tobias, yes folks have come here after suspecting various implants as their ITP cause. No names immediately come to mind for me to tell you about. Also, 'steel' as the culprit doesn't come to mind either. Seems like it's been other metals. Chromium maybe?

You can get a handle on how folks have handled this sort of thing by a key word search using the PDSA forum search tool. Might start with a search on words like 'metal' or 'implant'.
pdsa.org/discussion-group/search.html

Not sure what a 'LTT' test is.

Hope this helps.

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New to ITP, my story so far... 2 months 4 days ago #67475

  • mrsb04
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Hal see this for LTT www.ncbi.nlm.nih.gov/pubmed/15230812
Toby:- Be interesting to see if it is the stainless steel plate, which is a new one on me

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New to ITP, my story so far... 2 months 4 days ago #67477

  • Toby-Wan-Kenoby
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Hey Hal, thanks for the search suggestion. So far all I found was references to breast implants.
The Leukozyten Transformation Test as it was explained to me basically tests if my blood shows a reaction to the metal. Steel is composed of a mix of elements like iron, crome and some other trace metals. So it can be any of the components that I might be reacting to. Both my haematologist and the surgeon discount the possibility that that might be the cause but they can also not tell me what it might be.
So as far as I am concerned we are both fishing in the dark and my guess is as good as theirs.
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New to ITP, my story so far... 2 months 4 days ago #67478

  • Toby-Wan-Kenoby
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So here more info.
I also was tested for Heliobactus Pylori and the test came back positive. So I started a tripple therapy of 2 antibiotics and a proton inhibitor. I stoped one of the antibiotics after 8 days as I was getting elevated heart rates from it. The second one I took for 14 days.
I have not taken any antibiotics in the last 30 years so. I will get tested with the C13 method to see if the eradication was a success.
It is noteworthy that right after I started the antibiotics my count went from 6k to 62k but went all the way back down while still on the antibiotics. Very strange.
At the same time I did a7 day water fast to see if that does anything. Well as the count went down before the fast stopped I concluded that it probably did not do anything. Will update as new results come in.
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New to ITP, my story so far... 2 months 3 days ago #67483

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Just got the results back from the full body CT scan yesterday. All checking out OK. The spleen is ever so slightly enlarged (elongated) but very slender so Dr. said not to worry about that.
Zytogenetic evaluation of the bone marrow also came back OK.
So primary ITP is still the diagnosis. Count today at 3k. Slight Petechiae on my foot, but no other bleeding symptoms other than bruising on my leg and left arm.
Now waiting for the results of the LTT test to see if my blood reacts to the metal that was put in my leg when I broke my ankle in Feb.
Next step will be an operation to extract the stainless steel stuff in my leg and go from there.
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New to ITP, my story so far... 2 months 2 days ago #67489

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T-W-K will you get the steel stuff removed from your leg only if the LTT test comes back positive, right? You didn't make it sound that way.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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New to ITP, my story so far... 2 months 2 days ago #67490

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MeIA, the LTT test is fairly new and since steel is composed of so many elements it can give a lot of false negatives as one would need to test against it all. It is not even clear what to test because the manufacturer of the material was not very forthcoming with info.
If it comes back positiv it will get my hopes up that this is the root cause. If negative I will have the operation anyway since it is also bothering me with some discomfort and pain. The stiff just does not belong their and I want to get rid of it.
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New to ITP, my story so far... 2 months 2 days ago #67497

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Thanks T-W-K. If the hardware is causing you pain then I can see why you would want it out even if it isn't the cause of your ITP. Good luck with that, doesn't sound like a "fun" surgery. Just had a total knee replacement, think it is cobalt but won't swear it.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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New to ITP, my story so far... 2 months 1 day ago #67507

  • Toby-Wan-Kenoby
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MeIA, I made it last surgery as fun as I could. I had a deal with the anesthetist that I would start to count out loud when she started the drip and she would write the last number I said on my hand so I would know when I woke up. The last number I remember saying was 11, but I must had counted on as she wrote 15 on my hand. I also wrote a message for the surgeon on my leg, it read "Don't strive for good, go for perfection". All went well....
I am trying out Papaya Leaf capsules starting tomorrow morning. My count is stable at 3 so I have a good base to see if there is any effect. I will report back.
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New to ITP, my story so far... 2 months 6 hours ago #67526

  • Hal9000
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Tobias, here is a link to 'gspaniol' initial story. Had a hip prosthesis. Looks like he didn't respond well to steroids. 'responded' to IVIG.
pdsa.org/discussion-group/6-general-itp-discussion/28100-please-read-and-respond-to-this-unusual-itp-story.html#41488

Eventually he achieved remission via Cyclosporine. AFAIK, the only person on PDSA forum for that to happen with that drug.
pdsa.org/discussion-group/6-general-itp-discussion/30298-i-am-in-remission-after-six-years.html#66028

Maybe 'chromium' or 'cobalt' are better search terms.
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New to ITP, my story so far... 2 months 5 hours ago #67530

  • Toby-Wan-Kenoby
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HAL, you are such a great resource on here. Thanks for pointing me to these links.
The LTT test is delayed by a week as the currier that transported my blood from Switzerland to Berlin goofed and it arrived too late to still be used. So once more 10 vials of blood will be drawn tomorrow.
In my case it is just a plate and 11 screws, nothing as major as a hip replacement or resurfacing. I think there is no safe level of chromium in serum despite what some doctors say. Some people will react differently than others. And the immune system is an exceptionally sensitive equilibrium.
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New to ITP, my story so far... 2 months 3 hours ago #67531

  • MelA
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T-W-K, good for you making the best out of bad situation! Love the message you wrote to your surgeon - bet he/she did too. I'll be getting my other knee replaced in November and I'm hoping it will go as smoothly as the first!

With the plate & screws have your bones fused? At what count does your hematologist and surgeon want you to be for the surgery?

Sorry the LLT test arrived at the lab too late to be used! One thing about us ITPers is we (or most of us) are used to being stuck with a needle - one time I even let a trainee take my blood, well after a number of sticks and moving needle around once in she couldn't get blood so the tech had to get it, figured she might as well experiment on me since I'm used to it.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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New to ITP, my story so far... 2 months 3 hours ago #67532

  • Toby-Wan-Kenoby
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MeIA, I get a daily count of my platelets so needle sticking has become the norm for me as well. Half the time my insurance pays and the other half is $45 equivalent per day. I will continue that until I get to know me better and experimented a little. Then daily will not be necessary. But since I am new I want to learn an therefore I want a daily count. So I charted my count over the DEX pulses and they are like clockwork for me. High on 11th day after start and then 3 days later back down to my base level around 3k.
Very brave on the trainee experience ;-)
The next few days will be interesting with the Papaya leaf experiment. As my count is super stable at 2k or 3k since I bottomed out after the last DEX pulse. So any effect will be nicely visible.
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New to ITP, my story so far... 2 months 2 hours ago #67533

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You need to remember though T-W-K that a platelet count fluctuates all the time, your count could be higher or lower right after the draw.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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New to ITP, my story so far... 2 months 2 hours ago #67534

  • Toby-Wan-Kenoby
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I wish I was able to attach a chart or file or picture. Here my count over the last DEX pulse. Date format Euro style.
26.08.19 3'000
27.08.19 3'000
28.08.19 4'000
29.08.19 7'000
30.08.19 8'000
02.09.19 42'000
03.09.19 50'000
04.09.19 54'000
05.09.19 42'000
06.09.19 23'000
09.09.19 3'000
10.09.19 5'000
11.09.19 3'000
12.09.19 3'000
13.09.19 2'000

Agree that it is variable. So 5 and 3 are probably more or less the same. But if the Papaya gets me above 10 it would be significant. Fingers crossed.
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New to ITP, my story so far... 1 month 4 weeks ago #67545

  • Toby-Wan-Kenoby
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OK, so after 5 days of platelets staying around 3k I started with the papaya leaf pills.
3200 milligrams a day (8x tablets of 400 mg each)
I took them for 2 full days over the weekend and just had my levels checked and they came in at 10k
That looks promising, lets see the next few days. I will also start to drink the papaya leaf tea more regularly. It is extremely bitter but I am OK with that.
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New to ITP, my story so far... 1 month 3 weeks ago #67560

  • Hal9000
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I think 'maria32' did some research on Papaya Leaf a few months ago when she was giving it to her son. That it primarily stimulates megakaryocytes / platelet production a small bit for someone with ITP. It will be interesting to see if it can sustain.

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New to ITP, my story so far... 2 weeks 6 days ago #67849

  • Toby-Wan-Kenoby
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OK quick update.
On the papaya leaf, it basically failed. After 3 days I was back to my original count of 2k and never went up from there. Maybe I did not try it for long enough but for me it did not do anything at the time.

So after being at 2k for a few weeks we started nPlate with 100mcg and increasing it my 100mcg per week. At first my plates returned to my base level of 2k.
So I was convinced to try one course if immune globulin IV. That kicked my plates up to 185k. It droped back to 95k and I was convinced I would be back to 2k in no time. But at my next check it was back up to 182k. So with nPLate at 500mcg and 3 days after my last course I am standing at 292k. 4 more days until my next nPlate injection and I am curious where I stand then. It seems to work for now.
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New to ITP, my story so far... 2 weeks 4 days ago #67862

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What is that, about a 6 or 7 dose Toby-Wan-Kenoby? I think the calculation would be 500 / kg weight = dose number.
Not sure about the timeline but a 292 count sounds like a lot. Have you familiarized yourself with Nplate dosing rules? Hopefully they will check your counts before giving the next Nplate dose.

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New to ITP, my story so far... 2 weeks 3 days ago #67865

  • mrsb04
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Toby

The point of treating ITP is a safe platelet count not a normal one, a count of 292 would terrify me. All those juicy immature platelets going round my system .

UK dosing guidelines for N Plate
Action related to count
< 50 Increase once weekly dose by 1 mcg/kg
> 150 for two consecutive weeks decrease once weekly dose by 1 mcg/kg
> 250 Do not administer, continue to assess the platelet count weekly
After the platelet count has fallen to < 150 resume dosing with once weekly dose reduced by 1 mcg/kg

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New to ITP, my story so far... 2 weeks 3 days ago #67867

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The dosing is different in the UK and American literature. Why that would be so I have no idea but in the US the 150 is replaced with 200 and it says not to administer at all with a count over 400.

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New to ITP, my story so far... 2 weeks 3 days ago #67870

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Same with Eltrombopag. UK has lower cut offs with that too.
Suits me as it lessens the risk of clotting in my opinion.
Considering both treatments have a target count of 50 I cannot understand why they go so high before recommending dose changes.

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New to ITP, my story so far... 2 weeks 2 days ago #67875

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When I was on the trial for romiplostim, the cut off was 450. Once I had a count of 448 and they insisted on my having the injection. I found that really scary. After the trial was over I was self injecting and making my own rules.

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New to ITP, my story so far... 1 week 4 days ago #67896

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mrsb-
The reason is that things can change very quickly. I was +100k using a vial for about a year but suddenly had GI bleeding with 10k and needed to dose up. Since counts achieved using these drugs are less stable than those on immunosuppressants.
The question is whether I should have tried cutting dose while I was still on a vial and +150k so I wouldn't need to dose up?
I mean less drug in the body, less resistant against it?

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New to ITP, my story so far... 1 week 4 days ago #67898

  • mrsb04
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Lman
What are you referring to by 'these drugs'?

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New to ITP, my story so far... 1 week 3 days ago #67906

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I meant nplate and promacta. I have not tried promacta but as you know counts swing on nplate. I think same is true for promacta.
Consider steroids. Won't any doctor try to reduce pred dose if you are always above 50k? But they don't do same because counts swing so much on Nplate (And probably promacta, because dosings are mostly the same).

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New to ITP, my story so far... 1 week 3 days ago #67907

  • mrsb04
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Lman:- Modes of action between the two are different. I found Romiplostim most unsatisfactory. My counts sung around all over the place. Eltrombopag from my experience produces much more stable counts.

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New to ITP, my story so far... 2 days 8 hours ago #67961

  • Toby-Wan-Kenoby
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We are following the standard protocol. Increase by 100mcg per week until above 150k platelet count. Above 400k stop until below 150k then continue with a reduction of 100mcg.
In my case it went from 292k (on a Friday) to 458k (next Tuesday) at which point we halted the nPlate injection. Then to 581k that Thursday. To 158 next Monday. 37 next day (Tuesday). We administered 400mcg of nPlate. Checked on Wednesday and the count was 3k. We started with Privigen an IVIG (400ml=40g). Count next day was 1k. Another 400ml of Privigen. Next day count was up to 7k (last Friday). Then yesterday I was at 67k and today is nPlate Day (always Tuesdays) and I injected 400mcg of that stuff again.
So I hope this cycle it does not shoot up that high and we find the right dose to keep it above 50k and not too high.
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New to ITP, my story so far... 2 days 2 hours ago #67965

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Sounds complicated. It takes 4 or 5 days for an injection to have any effect so little point in having lots of blood tests. I always had a count done on injection day so I'd know what dose to do. Then leave it for a week... until I got stable of course then did monthly bloods.

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