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My Remission Story...... 7 months 6 days ago #73278

  • Toby-Wan-Kenoby
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4 years ago I saw a doctor about red spots on my legs thinking it was some sort of bites from swimming in a lake. I had just traveled back from watching a total eclipse in Chile and next thing I was sent straight to the hospital with a TC of 1.
Scary at first until the diagnosis of ITS was made. I had too many test to recount. My spinal fluid was looked at. I had 2 bone marrow biopsies, a PET CT, numerous MRTs more CTs. I had more needles stuck in my than I am willing to recount. 
My base level of TC was in the single digits. Like 3 or so. My record is a count of 1 on a few occasions. We started with serious crash course of DEX. I was given immune globulin on a weekly basis for a while. I started nPlate and was on 1000mcg when it failed to work. I tried other trombopoetin agonists, non really worked. We had a round of Retuximap with a bit of temporary relief. Nothing to write home about. 
I tried alternative remedies like Papaya extract, curcuma and a lot more stuff. I resorted to buying my own blood analysis machine for home use. A proper Sysmex machine that is used in hospitals. I actually bought two as I did not dare to be without one and since I spend a fair time in the US other than Switzerland. 
I was always kind of relaxed even with ultra low TC. Even single digits did not phase me. I was on a holiday trip to the US when I lost my ability to speak in the course of 5 minutes. I videoed the whole episode on the way to driving to myself the nearest hospital. It turned out that I had a brain bleed and Tc of 5. I was working physically and that might have cause what are basically Patechiae below the skull. Was given some platelet transfusion and flown to the nearest neurological ICU. 36 hours later and $160k in cost I was "kicked to the curb" and took a 6 hour Uber back to my home. I had travel insurance and after almost a year of pushing them they paid up. 
I flew back after a days rest and went straight to a hospital in Switzerland aft my levels dropped back into the teens again. After the doctor wanted to send me home I told him in no unclear terms that he has no clue what he is talking about and that if they don't want to face a massive lawsuit if something happed he came around and administered another dose of platelets.
But this was the turning point I think. My hematologist once told me a platelets dose id=s like an organ transplant. And I have the feeling that my immune system was confronted with somebody else's platelets and they were somehow different than my own. I think it got my system thinking that TC are not that bad after all. I was also on Prednisone 10mg. Bit over the Cours of 6 months my levels reached highest that I had never seen since the diagnosis. After nPlate they sometimes shot up to TC 300 then came down again after weeks. So I spaced the nPlate course over more and more weeks. IN March of this year it was 4 weeks between 100mcg nPlate. It went up to 300 and then down to 90 again when I read ministered nPlate. In April I decided to just see what happens after TC 90. It paused there for a few days and then slowly started to creep up. 2 weeks later I broke 150 for the first time and it now has been 3 months with levels between 150-160. I measure myself every 2 days just to keep track. I have since tapered out of any cortisones. So totally unmedicated at this point. 
The only think I am still dealing with is a neuropathy in my lower legs. This might also be an auto- immune phenomenon. But doctors do not know what to do about it. 
So I was as deep into this as any of you. I never stoped believing that if my immune system can snap into ITP it could nap out of it. But man was this a hard journey. Now I am confident that I can also deal with the neuropathy. In a way it is even harder than ITP as nobody seems to know what to do.

But what I wanted to say is: If the ITP can decide to let me alone with base levels of TC 1 then it can decide to leave you in peace as well.  
Diagnosed 7/2019 let the fun begin...

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My Remission Story...... 7 months 1 day ago #73289

  • MelA
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Toby after I came off of prednisone back in '92 my count stabilized about 110-125k if I remember right.  Then in about 2002 or 3 I had a tetanus booster that sent my count way down and was given 1 Win-Rho IV - since then I'm at decent counts & no treatment/s.

I too was diagnosed with peripheral neuropathy some years back and it is in both lowers legs from knees to tips of toes.   Really there is nothing to be done - I was told that it has been studied & proven to take 600mg of Alpha Lipoic Acid 1x a day with food - and YES that helps me, I didn't realize it really until I had to go off of it a week or 2 before total knee replacement as the symptoms of neuropathy were worse while off it.  If I remember right don't take B6 supplements as that can make it worse.   Something else that helped me was acupuncture - it took a number of weeks before some symptoms eased (at first going a couple times a week then down to 1x a week, eventually every couple of weeks) - it eased the lightning strikes really well!    My neurologist said he wouldn't try to give me Celebrex - I was on gabapentin for a while but it didn't help so got off it.  

I just live with neuropathy and hope it doesn't get worse as you can end up with foot drop or in a wheel chair.   Yes, neuropathy I was told is an autoimmune disorder - people do get it from having diabetes, some from cancer treatment.   But mine is idiopathic and autoimmune.

See what your doctor says about the 600mg of Alpha Lipoic Acid (need to be on it a bit before it helps - now for me when I say helps I mean eases some symptoms slightly, no miracles or miracle cures) - it was my neurologist who told me it has been proven helpful at the 600mg a day.   Give acupuncture a try - I loved it - but have to have patience.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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My Remission Story...... 7 months 6 hours ago #73291

  • Toby-Wan-Kenoby
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MeIA, I have neither got diabetes nor any cancer history. So seems autoimmune as well with me.
Stated like 10 years ago with just a slight tingling in my toes but since then it is full on numbness also from the knee down. Will try the 600mg and see how it goes. 

ONE THINGH AT A TIME. For me it was ITP at the center of things. Now that that has retreated I can focus on the next thing.
Diagnosed 7/2019 let the fun begin...

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My Remission Story...... 6 months 4 weeks ago #73293

  • MelA
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Toby do let me know if you try the 600mg of Alpha Lipoic Acid (capsules, so easy to swallow) - if going to work you won't get an immediate response.  Wish I could recall how long it took, I'd give it a few weeks just to be sure.

Good Luck!!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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