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12 Aug 2023 02:00
  • 1wildhag13
  • 1wildhag13
Hello,
I think the 'standard' for major surgery is 100k. My orthopedic surgeon wants 100k. Yes, there will be blood thinners for a month. I don't know the name yet, but whatever it will be, it has to be at the lowest dose, says my hematologist. I don't quite understand why with ITP the platelet life span is less than 5 days.
03 Aug 2023 06:25
  • AnnaM
  • AnnaM
Hi RinJin,
My case is a little similar to yours although my platelets are falling slower. I was around 120K at 20, and now my counts are around 40K at 38 (so about a 4K decrease per year). 
Do you have bleeding symptoms or not ? If you don’t, a 48K count is usually not a problem and doctors probably won’t want to treat you for now. 
The important thing is to have a competent doctor following your case. 
In my case, when my counts dropped too low during pregnancies, they tried prednisone and IVIG and my count didn’t go up. Combined with a few other factors, they thought in might be genetic and I’m now waiting for some genetic test results. Preliminary findings seem to indicate it really is a genetic disorder. 
ITP is a diagnosis of exclusion, if you’re having doubts, you should discuss them with your doctor(s). 
Could you provide a few more details about your condition? I’ve been trying to find other people with steadily dropping platelet counts but I haven’t had much luck. Have your platelet counts always been under 150K? Do other people in your family have low platelets, or bleeding symptoms? 
02 Aug 2023 08:45
  • CindyL
  • CindyL
Wow, mrsb, talk about a yo-yo count!  Hopefully they can find the right dosage for you soon.
02 Aug 2023 04:16
  • mrsb04
  • mrsb04
Count now 131 so Avatrombopag is working but  finding the appropriate dose is proving difficult 
02 Aug 2023 04:13
  • mrsb04
  • mrsb04
Gerlinde
Average lifespan of platelets in ITP is generally less than 5 days as opposed to 7-10 days in none ITPers.  
Newer platelets are larger and more sticky than mature ones thus risk of thrombosis is increased. This is why treatments are supposed to be at the lowest dose possible to keep counts above 50. 
My haematologist told me at diagnosis (9 years ago) that should  I need surgery with a count above 50 I would require subcutaneous Heparin injections whilst activity was reduced. 
31 Jul 2023 17:42
  • Juliandrea85
  • Juliandrea85
Hello!!
Yes and it helps a lot during heavy periods. In spain is called amchafibrim.
31 Jul 2023 13:43
  • MelA
  • MelA
Gerlinde I had both knees totally replaced in 2019 about 10 months apart.  There was no question about my platelets, my surgeon knows about ITP and didn't question my count, however he did have a count done a week before.  I can't recall now what it was.          After each surgery I was put on baby aspirin for a certain length of time - and my hematologist had a count done 2 weeks later and you know what, my count went UP while I was on the baby aspirin both times!   I am not on a treatment for ITP so can't tell you about having an increase in dosage - do know an oral surgeon wanted me to have a certain count before he would do surgery to cut the gum to get to a root, but my count ended up being ok with him.

Late last year I was put on a daily baby aspirin forever - again, my count has gone UP.   Crazy huh? 
I'm no spring chicken and have had ITP since mid-1989.

I'll tell you - a former hematologist told me she would be happy with a count of 50,000 for brain surgery.   I wanted a closer hematologist as I didn't like driving downtown so that's why I don't have her any longer.  

What is your count doing now?   Are you still on Nplate?
31 Jul 2023 09:57
  • 1wildhag13
  • 1wildhag13
For later this month I have a total left hip replacement scheduled. Since I have been mostly on Nplate, my hematologist will use that to calibrate my plt count. My orthopedic surgeon wants a count of 100k which is ok, but I would like 100+. The surgeon, he tells me, will need to use a blood thinner after surgery to reduce the chances of getting something like deep vein thrombosis. How does that work?
I would like to hear from others who had a thr, and dealing with the blood thinner issue. As for platelet management, did your doctor increase the medication to account for fluctuations? For example, if the goal is 100, did your hematologist raise the plt count to 150 prior to surgery to make sure the 100k will be there on the day of the surgery? Anything else related to this?
Thanks!  Gerlinde
29 Jul 2023 00:12
  • MelA
  • MelA
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!!!
28 Jul 2023 15:09
  • Toby-Wan-Kenoby
  • Toby-Wan-Kenoby
Can highly recommend nPlate. A TPO argonist. Once a week injection. In Europe at least I was able to inject myself after being shown just once. Makes travel easy. In. my case it stoped working after a while. Then tried all the other TPO stuff and after getting on cortisone we tried nPlate again and in combination it worked really well for me. 
28 Jul 2023 15:02
  • Toby-Wan-Kenoby
  • Toby-Wan-Kenoby
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.
27 Jul 2023 04:32
  • mrsb04
  • mrsb04
Juliandrea85
Have you tried Tranexamic Acid during your periods? 
27 Jul 2023 00:22
  • MelA
  • MelA
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.
26 Jul 2023 19:34
  • Juliandrea85
  • Juliandrea85
I Was diagnosed at age 11 (1996). At age 22 I had My spleen out and in remission for 10 years. Until age 32 that I had an extremely heavy periods and went to ER. Turns out it Was a relapse. And i continue with this...
I'm now 37 years old.
I've Tried nplate several years and changed to avatrombopag in january this year. Always with deflazacort. During these years i've been with ivig at least 5 times. 
I'm tired of this condition. I'm a woman so when platelets are low I have heavy periods.

Good Luck and let's hope all for a remission
26 Jul 2023 19:21
  • Juliandrea85
  • Juliandrea85
Hello!
I want to know if somebody had The hpv vaccine (gardasil9) and if they had any side effects. I'm under treatment (deflazacort and avatrombopag), with counts between 70 and 100.
I'm affraid the vaccine Will cause a drop in my counts... needing an ivig round again.
I've also read about itp patients who started a lupus flare after this vaccine 

Thank You 
26 Jul 2023 10:47
  • mrsb04
  • mrsb04
Exactly Cindy. My daughter in law is much more worried than me. 
26 Jul 2023 09:09
  • CindyL
  • CindyL
I like your attitude, mrsb!
This may be terrible of me to admit, but even at my lowest, I didn't take the ITP as serious as I should. Treatments were just something I had to put up with.  If one didn't work, I just moved on to the next.  My sister was more concerned with my ITP than I was.
Good luck on the next test!
25 Jul 2023 17:14
  • Vancouver40
  • Vancouver40
Thank you SOwens for bringing up Oxalates and sharing your story. Like gluten, I strongly share your view that Oxalates are a suspect in ITP, which is from my own experience too. Just prior to my ITP onset, I was consuming spinach daily with blueberries and oatmeal in the morning for an extended time, believing they were very healthy for me. Turns out spinach is very high in oxalates which is a plant toxin that harms your health. Further, oxalates are stored in your bones, specifically in your bone marrow, where blood is generated, such as platelets. They interfere with the production of blood, such as platelets, and cause immune responses. Please see the youtube video interview "Oxalates are Ruining your Health with Sally Norton" by Paul Saladino MD. Specifically, go to minute 55:01 in the video which discusses oxalate interaction with the immune system. I believe this highlights the need to cut out high oxalate foods from one's diet, such as spinach, swiss chard, beat greens and relative vegetables high in oxalates. As a sidenote, oatmeal and blueberries are also other "health foods" I have eliminated that have helped me improve my platelet count naturally. Wishing everyone strong platelets!
25 Jul 2023 09:42
  • mrsb04
  • mrsb04
Me too Cindy  but I'm prepared to give it a bit more time before I completely lose heart 
25 Jul 2023 09:39
  • mrsb04
  • mrsb04
25 Jul 2023 08:57
  • CindyL
  • CindyL
Aw, shucks, mrsb, that sucks!  I was so hoping that you would remain in your comfort zone and graduate to fortnightly testing.
24 Jul 2023 17:57
  • Shalindewan
  • Shalindewan
Hi all - I am new to this forum and thought would be good time to share my experience and see if anyone here had any advice.
I am a 35 yo male and was diagnosed last year while on holiday where I got sick and had bleeding symptoms I had a platelet count of 8K. I returned to the UK after being given IVIG and romiplostim which caused my platelets to rise to 400K+ however a week in my platelets dropped to 17K.

I was then diagnosed by the NHS in the UK with ITP.
I was initially treated with a 4 day high dose dex which shot my platelets up to 60 but was down to 9 just 3 days later.
I was then on IVIG every 30-40 days for 5-6 months. IVIG allowed my platelets to rise to 200,000-400,000 before falling again. 
In February this year I was moved onto Nplate Romiplostim as a second line treatment and taken off of IVIG. 

With Romi I started at 250 mcg and have ranged between 11K-150K. When I was 11K i was leaving for a trip to Bali for 1 month so was given IVIG which combined with romiplostim meant I ranged between 190K-700K for a month.

Thereafter I continued on 350 mcg-500 mcg where I ranged between 37K-270K. Then last week my platelets went to 9K and had bleeding and bruising symptoms. I was then given IVIG last week and my platelets are now 932K

Now my doctor suggest I move to mycophenolate. However reading up on the side effects and risks like depression its quite scary. I also read to discontinue Nplate romiplostim if the platelet count does not increase to a level sufficient to avoid clinically important bleedingafter 4 weeks of Nplate therapy at the maximum weekly dose of 10 mcg/kg, which in my case is 900 mcg. I have only gone up to 500 mcg.

Just wondering what anyone would suggest, with my counts able to get so high it seems its the destruction of my platelets where I have a problem and I can produce platelets ok it seems.

Thanks!
24 Jul 2023 15:20
  • mrsb04
  • mrsb04
Count =28. Up to 3 x a week Avatrombopag...still on weekly bloods.
22 Jul 2023 14:32
  • Toby-Wan-Kenoby
  • Toby-Wan-Kenoby
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.  
19 Jul 2023 19:09
  • Vancouver40
  • Vancouver40
Wishing to update this forum thread. I was able to finally try the natural parasitic cleanse Parastroy. Starting on June 22nd, I did 14 days of the cleanse, which entailed taking with breakfast and lunch 2 capsules of natural anti-parastic herbs and 2 capsules of sweeping fibre. I had purchased this cleanse last summer but was timing taking it when having a strong platelet count above 150, having slower time at work in case I needed days off, and being able to work mostly from home so my bathroom was nearby during that time. I potentially anticipated my platelets coming down during this cleanse but my platelets did not drop during the 14 days and a subsequent blood test on day 16 resulted in the same level I started with at 148. That was good news. During the first couple days, I was in the bathroom alot, several times a day. Towards the end of the first week, bathroom visits were normal but I stayed close to home in case. Week 2 was testing my patience due to the increased bathroom visits again and the feeling of discomfort from the strength of the anti-parastic herbs. I could feel why they would create an uncomfortable environment for any parasites and push them to leave the body. I also drank plenty of fluids to rid the sweeping fibre from the body. Some reviews online mentioned week 2, so days 7-14, would be the time the body is more likely to expel any parasties. I didn't see anything when quickly observing my poop before flushing (Gross!). That being said, some reviewers of this product saw parasites, while others noted parasites can be smaller than the eye can see, so one may not see anything, like in my case. Ultimately, my platelet count did not immediately shoot up after the cleanse nor did I feel any particular difference afterwards. This however could be a longer term story as I monitor if future platelet crashes happen or if they cease. I will continue to journal and monitor ITP related details. I did feel more energy during the first couple days and I learned extensively about parasitic flukes, like liver flukes and blood flukes, which can impact platelets. The point of this natural parasitic cleanse was to rule out parasites being a reason for my ITP and to test what another member on this PDSA forum Cindy1 experienced. I do feel that after this experience, I will try other natural cleanses in the future to see if perhaps this product was not strong enough, as some reviews on iHerbs mention like Humaworm and DrNatura. Anyways, wanted to share this for others to benefit from. Wishing you strong platelets!
19 Jul 2023 18:37
  • Vancouver40
  • Vancouver40
Agreed with your opinion that with all advice, it is important to question the statements for validity and to personally verify them. I understand to be a registered Cardiologist, extensive professional education is required, as well as regulatulation from external and independant medical professionals. With over 45 years of Dr. Gundry practicing medicine, I'm inclined to believe Dr. Gundry is speaking from experience through his practice and the education he received. Next step is testing of course and personally verifying. I saw with my own experience that it helped my thrombocytopenia and hence my wanting to share on this forum for others to potentially consider for their own situation. In my situation, adjusting my water intake was not a dramatic step but did seem to help considerably. Wishing everyone strong platelets!
19 Jul 2023 13:11
  • MelA
  • MelA
mrsb that really is good news - and fingers are crossed you get that promotion :)
19 Jul 2023 08:47
  • CindyL
  • CindyL
Yay!  Finally your comfortable zone!  Is a fortnight 2 weeks?
Fingers crossed you stay above 50 on Friday!
19 Jul 2023 00:33
  • MelA
  • MelA
Good news mrsb!!

Good luck JVP!!
18 Jul 2023 15:59
  • mrsb04
  • mrsb04
Gave up on Fostamatinib/Avatrombopag/Pred  combo at end of May. Ava and Pred only since then.
On the 14th  July my count was 51. My current regime is 20mg Avatrombopag every 3rd day with Prednisolone 3mg/2mg/2mg.
I have been having  a blood test every Friday, however after seeing my Haemo Consultant yesterday  (17th) so long as my count stays above 50 this coming Friday I will be promoted to fortnightly bloods. 
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