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Recently diagnosed looking for optimism/input 3 months 3 weeks ago #70367

  • Cnease8
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  • Recently diagnosed with ITP December 8th, 2020 when my platelet count came back below 1. Now beginning the journey to stabilize them.
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On December 6th, I first noticed the petechiae all over my body, so I went in to urgent care on the 7th, where they did blood work. December 8th was the first day that all of this really came crashing in. I received a call with my results telling me that my platelets counts were 2, which is considered critical, and I needed to go to the hospital. By the time I got more blood drawn at the er, I was below 1. I received a bag of platelets since I was so low, steroids, an IgG transfusion and a bed in the hospital. I was released the following day with a count of 20, 2 days worth of steroids, an ITP diagnosis, follow up appts with the hematologist, and way more questions than answers. By December 12th, my count was up to 107, but without any continued treatment, I found myself back in the hospital December 16th with my counts back down to 3 after I discovered a baseball size bruise on my calf. I’m not sure how numbers can fall so quickly in 2-3 days, but it happened and now my hematologist is not optimistic that the steroids will get my count up and stabilized without crashing again once I’m off of them. He suggested we start looking into alternative treatments to stabilize my count anywhere above 30.

He’s suggesting Rituxan and/or Promacta. I was just wondering what some of your experiences, pros/cons, side effects, etc. are for any of you that may have used one and/or both. I’m an otherwise healthy 26-year old who barely ever had to go to the doctor for a cold before the last two weeks, much less the hospital, so this is all a total shock to the system! I’m home again on Prednisone while we explore other options, and I feel absolutely awful! I’m praying I can get off of these sooner rather than later with a better treatment option. I may also be naive to think that the other two drugs he suggested will make me feel any less icky than these steroids, but I’m trying to remain positive.

Any input, optimism, and/or experiences are truly appreciated.

- CNease

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Recently diagnosed looking for optimism/input 3 months 3 weeks ago #70368

  • MelA
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CNease - in my case I was diagnosed in the spring of 1989 looking like I had been beaten in a back alley with a 2x4. In July 1989 my husband, 2 sons & I moved to Tokyo while I was on 60mg of prednisone & not knowing if I would have a hematologist once there. I did in fact get a fabulous hematologist who actually knew my hematologist in the States! From Tokyo we moved to Hong Kong, not so lucky on the hematologist there but I survived. That's the short version. We traveled into mainland China, Macau, Thailand, Egypt, Italy, Singapore, the UK and more. I was fortunate that prednisone helped - I was diagnosed when the choices were prednisone or splenectomy - since no one could assure me spleen removal would cure me I still have it. After a tetanus booster in 2002 tanked my count I refused prednisone & was given and IV of WinRho which did the trick. My count isn't in the normal range but is decent. I have had no other treatment but those two.

Like you it was a total shock when those little red dots appeared & then the huge bruises. I would think that is how it is for most of us.

Can't help you with Rituxan or Promacta but others here can. Just wanted to tell you my story since you were looking for "optimism".

Welcome to the forum!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Recently diagnosed looking for optimism/input 3 months 3 weeks ago #70369

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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Cnease
It's a shock to start with. I'm a recently retired Renal nurse and was totally out of my comfort zone when I was first diagnosed 6 years ago.
Platelet transfusion effects are only transient, it is quite normal for counts to drop quickly following transfusion.
Here is a link to the updated international guidelines for ITP treatment (odd looking link but works) ashpublications.org/bloodadvances/article/3/22/3780/428877/Updated-international-consensus-report-on-the

It is quite wordy but well worth reading. There is a section entitled 'Recommendations for initial treatment of newly diagnosed' patients' I strongly recommend you read this section at the very least.

Do not let a doctor railroad you into any treatment you do not feel comfortable with. Ask for their evidence base of what they are suggesting. This will give you a very good indicator of how current their knowledge is.
For example Rituximab during a rampant Coronavirus pandemic is not recommended by either the American or British Haematological societies. " Avoid rituximab as it can decrease formation of de novo antibodies, hence reduced immunity against COVID‐1" see this link for the complete paper published in July 2020. www.ncbi.nlm.nih.gov/pmc/articles/PMC7361579/

You need the least amount of treatment possible to keep your count above 30. Far too many doctors treat the count rather than the patient's symptoms. This is a very old fashioned idea, which proves their practice is not holistic and outdated. It should be a 2 way process between patient and doctor.

Hope all goes well. Please let us know how you get on.

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Recently diagnosed looking for optimism/input 3 months 3 weeks ago #70371

  • b2h
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Welcome. Steriods are awful. What side effects and symptoms are you experiencing?

I continue to be suprised by how many new patients here are offered Rituximab in the very early days of diagnosis. It’s a very potent medication that can be wonderful and horrible. Have your hematologists go over all your options so you can make an informed decision. And yes, it will deplete your B-cells and your WBC will go down, so not the best for our Covid-19 times.

I’d say start with Promacta or Nplate. Those are very good ITP medications that have few side effects.

Yes, stay hopeful. ITP is by no means a death sentence. It is frightening and can be quite worrisome in the beginning and until you find a treatment that works for you. Get a good hematologist. I understand you don’t know what that means yet. Just pay attention to whether they listen to you, believe you, have good game plans and know what’s in the pipeline as far as medications to try are concerned. Make sure they understand you as a whole person, your life style and how treatment will fit into the big picture as well as keeping your counts up. (Promacta has dietary rules but is an easy pill to take, Nplate is an injection, Rituximab is an infusion… )

Best ~

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Recently diagnosed looking for optimism/input 3 months 3 weeks ago #70372

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
  • Posts: 1812
  • Karma: 7
  • Thank you received: 516
Romiplostim (Nplate) and Eltrombopag (Promacta) are drugs known as TPORAs (Thrombopoietin Receptor agonists), they increase platelet production.

The dietary rules with Eltrombopag can be virtually negated by taking the tablet very last thing before you get into bed, all you have to remember to do is not have any high calcium foods for the previous 4 hours. Less than 50 mg in 4 hours before and 2-4 hours after taking tablet.

Romiplostim is self injected over here in the UK, but if my understanding is correct in the US you have the hassle of having to go to a surgery to have it administered.

There is also another tablet called Avatrombopag (Doptelet) which has no dietary restrictions. This has been licensed in the US for ITP and hopefully will be licensed shortly in the UK.

If anyone mentions splenectomy refer them to the new guidelines "......splenectomy should be deferred for ≥1 year to allow for remission".

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Recently diagnosed looking for optimism/input 3 months 4 days ago #70430

  • Vancouver40
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  • Received diagnosis of ITP in July of 2016 after going to emergency in Vancouver, BC, Canada and finding I had 3 platelets at that moment. Repeatedly had crashes every 3 to 6 months. In 2019, one crash & 2020, after an imminent crash, raised them naturally
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Similar to you, I was diagnosed with ITP in July 2016 with 3 platelets when I went to ER after having purpura and bruising all over my body for several days. I was 36 years old. Was in and out of the hospital three times in the next year, getting IVig and dexamethesone. Fast forward to today, January 2021 and I have improved my situation significantly in my opinion. I have increased my platelets naturally three times in 2020 after my platelets were decreasing steadily. I would recommend the following which has helped me tremendously:
- Read the book Wish by Spirit by Joan Young. This is a must in my opinion. She put her ITP in remission naturally. I believe in this.
- The following things have helped me increase my platelets naturally when taken together: (1) drinking 1 liter of Electrolyte beverage Pedialyte during a day, even two over two days, (2) Taking a daily Probiotic by Renew Life 80 billion or 100 billion bacteria (3) Taking a Multi Mineral/Vitamin called EMPplus by EMP (two capsules with breakfast, two with lunch) It has a wide spectrum of quality essentials we may be deficient in (4) Taking Monolaurin for 3 months daily, three times a day with every meal. (4) Vitamin D3 (50K IUs ) and K2 (15K mcg) weekly.

These are items that have helped me increase my platelets naturally when they were tanking on there way below 100. In some cases 30K in three days. I have had less crashes annually since when this all started. When I do have crashes, which is typically January every year for some reason which I'm still trying to clarify (Increases in holiday Sugar, Stress, Seasonal Darkness, etc), I usually respond to Dexamethesone.

Further, I have declined Rituximab treatment and have not had my spleen removed. I am against these procedures for my situation. Joan Young's book inspired my decisions to do so. After seeing many naturopaths and testing, my Testosterone levels were low in 2017 at 19. This seems to be a recurring theme when I read the Mens forums on PDSA with this condition. Perhaps related? I thought I had a parasite called Visceral Leishmaniasis but got tested with negative result. This can cause ITP if positive. I also thought my ITP was linked to Carbon Monoxide exposure from an old vehicle I drove. Got rid of Vehicle and still have platelets decline, so not the case either. I have changed my diet and this I believe has assisted. I eat a lot less sugar, carbohydrates and eat more vegetables, protein. Gave up alcohol completely, iced teas, and other sweets. I believe the diet helps tremendously.

Hope some of the above may help. Wishing strong platelets for you soon and for all on here reading!

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Recently diagnosed looking for optimism/input 3 months 1 day ago #70450

  • IhaveITP!
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  • Diagnosed with ITP in 2018. In “remission” at the moment.
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Stay hopeful!
Long story short, when I was first diagnosed with itp, dexamethasone was my specialists first choice. It worked, for a bit... id go a month here, two months there.. I’d take it again, they’d drop again, until it just wasn’t bringing them up.. I ended up having to do IVIG treatments every 2 weeks just to keep them stable. Ultimately, I was given a choice... I could get a splenectomy or try Rituxibam. I went with Rituxibam as my medical was willing to cover it, and, For me, splenectomy would be last resort after all options were exhausted. I did get my pre-splenectomy vaccines just in case, but I was hopeful. I was also warned that it could take up to 3 months to see any results. If there was nothing after that, chances are it didn’t work. Luckily, they started going up, slowly. I have been in “remission” for about 7 months now ( I’m hovering between 90-115) in my case, he says this is the best I will most likely get and that I will probably never be “normal” but My dr also deemed anything above 30 a win with No treatment needed until they drop below 20. Then it’s back to square one... steroids..
As far as side effects, the steroids weren’t awful but they weren’t pleasant... and with Rituxibam, I had no side effects.
luckily, I have had an amazing hematologist who tries to be current with his treatment strategies, is not pushy, and lays it all out so I understand.
Itp is a condition that’s manageable, it just might take some time to find what works for you. Good luck

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Recently diagnosed looking for optimism/input 3 months 1 day ago #70460

  • Chad89
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  • Diagnosed with ITP in 2007 at age 18.
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Hello! Don’t be too upset. As far as bad things go, there are definitely worse problems to have. You will find something that works for you and it might just take a few different routes to find out what that is. Some treatments have more side effects while others have little. It might go away for a month or two or maybe 10 years. You just never know. So try not to be discouraged and don’t let it hold you back from doing what you enjoy and making each day a good one.

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