Well last week my platelets dropped to 49,000 but then this week they went up to 240,000. Hoping my Hematologist will agree to just an N-Plate shot this week and see what happens

Hi Everybody. It has now been 3 months since I last wrote. In these three months her platelets have been in the 120 - 160 range.

We are now checking every 2 weeks and perhaps going to once a month soon. We were hoping to drop the Doptelet dosage down, but not consistently high enough to follow down as per the dosing schedule.

Either way, her oncologist agreed that we will take a slower approach and perhaps continue with 40mg daily and just reduce by 20mg one day per week once every few weeks until we get to the minimal dose to hold out.

Her oncologist can’t confirm if the quercetin is what made the effect, but being the only thing that has changed, other than simply time, she now puts it in her notes to continue with it.

The Quercetin we use is Thorne Quercetin phytosome 250mg, once in morning and once at night (generally with food). Once again, it took about two weeks of taking it along with Doptelet for her numbers to rise.

On supplement facts, yes it states

Quercetin Phytosome (Sophora Japonica extract (flower) / phospholipid complex from sunflower 250 mg

After a year(ish) on Mycophenolate my haematologist weaned me off it earlier this year. Apparently the risks of long-term use were too great. For about 4 months of no treatment I coasted along at counts around 70. So I was to cut blood tests down to every 2 months. But at the two-month point my count was down to 34, and two weeks later 22. Today I started Rituximab, weekly treatment for four weeks, and weekly blood test. No reaction or side effects so far 🤞

I feel sorry for your rollercoaster Margaret. And I wish you the best and hope that rituximab keeps you in lifetime remission. Any new updates about your infusion and infusion related to side effects. And why did your consultant not consider the other possibilities like the TPO's?

Well I too have been atlast crossed the 20K Mark after 2 months. Today had a CBC and it showed 45K platelets even though I had a farely high lymphocyte counts. Tomorrow meeting my doc let's see what he has to say. I see the same trend as last year when I was started on MMF. 2 months steady counts at 20K and then two months 45-70K and after that counts above 100K just last year the dosage was 2g per day and this year 1.5g I hope it repeats the same.

And Again I wish you all the best for your treatment. Let's keep fighting ^⁠_⁠^

Hello Everyone,

I was diagnosed with ITP about 25 years ago (I'm now 50 years old). I've never had any treatment and have generally had no symptoms - except that I bruise easily. Over the last 25 years my platelet levels have gradually been dropping from 80 downwards. Over the last couple of years they have been hovering at 30 with one drop to 19 and more recently another drop to 21. I have been referred to the haematologist at my local hospital who want to try me out on Dexamethasone for 4 days to see how my platelets will react. Unfortunately I have recently been diagnosed with Osteoporosis of the spine and Osteopenia in the hip and femur. I'm really worried about going on Dexamethasone as  I understand it can cause bone loss. 

So, firstly, I'm wondering if I can get away without having treatment at all - seeing as I don't have any symptoms except for bruising easily. If I do need to have treatment, then I'm wondering if there is any non-steroid medication that I could go on that wouldn't make my osteoporosis any worse.

Thank you for any advice that you can offer me.

Susie.

Hi SusieJ,
Interesting that your doctor didn't refer you to a hematologist sooner with those drops. I don't know what to tell you about Dex and osteoporosis (I too have that) - what was your count when you saw the hematologist?

Hi MelA,

Thank you for getting back to me.

I haven't actually managed to see the Haematologist yet as they are too busy to see me and are only doning phone call appointments (I'm in the UK and the NHS is a tad overwhelmed). I had my first phone call in August when they asked me to get a blood test. They only call you with test results if they're concerned, otherwise you have to wait until your next appointment. I had my next call with them this Wednesday when they told me my count from my August test was 21. I've just had another blood test and will get the result at my next appoinment in about 3 months time.

I'm wondering if Dex has had any negative impact on your osteoporosis. Do you have to take it long term or is it just something you take sporadically to help with platelets? I was wondering if I should ask about Rituzimab therapy as this doesn't seem to be steroid based - and seems to have bone-sparing effects.

Many thanks,

Susie.

Not sure waht happened but my reply isn't here - sorry Susie. So when your count went to 21k in August it was suggested for you to give Dex a try? I'm surprised it wasn't prednisone. That is terrrible that you have to wait months to find out what your blood tests results are, didn't know that about the UK.

I have never been on Dex - when I was diagnosed the treatments were prednisone or splenectomy, since a cure couldn't be promised with a splenectomy I went for prednisone (which turned me into a WITCH ). I also had one Win-Rho IV after a tetanus booster dropped my count to the gutter. I understand Dex is harder than prednisone so not sure I'd want it.

Wish I could help you with Dex & osteoporosis - I just don't know. Sometimes I wonder if prednisone may have been the reason for arthritis in my knees and shoulder, but who knows.

Is this a question you could ask your primary care physician about - if so I would contact him/her!

SusieJ, you might find the page on this site regarding corticosteroid treatments helpful. It's located at pdsa.org/corticosteroids.html . Or find it in the drop-down menu from the "Patients and Caregivers" tab above. My advice is to read everything in that section. The information this site provides for laypeople is the best you'll find anywhere, in my opinion.

It would be wise for you to get the advice of your doctor about what effect dex might have on your osteoporosis. Dex is much more potent than prednisone, but you'll take it for only 4 days. Then again, it isn't likely to give you a lasting boost in your platelet count. You're likely to need something for treatment again. If that will be a repeat of a steroid, the cumulative effect will eventually affect your bone density.

If you could try a platelet booster drug, it wouldn't decrease bone density, and the other side effects would be fewer. But, they're very expensive drugs, and not routinely prescribed as a first line treatment in the UK. It wouldn't hurt to ask your hematologist about it when you see him/her, though. The attitude about them may have changed by now.

I once took a low dose of prednisone for about two years. It definitely decreased my bone density, but I was able to regain some with extra dedication to a cal/mag/vit D regimen. I was more active in those days, which helped too. I suspect at my age now, my inability to do weight-bearing exercise would put me at a disadvantage there.

A sustained count under 30 probably should be treated. If you were to have an accident with substantial blood loss, or if you'd need emergency surgery, the outcome might be dire. But in the end, I believe the choice to treat or not should always be the patient's.

Good luck figuring out how to proceed in your best interests.

Thank you MelA. I really appreciate your response. Best wishes, Susie

Thank you so much for your post. I really appreciate it. Best wishes, Susie

Hi there,

Well, I am not familiar with NHS. Steroids are often the first prescription, though dex could also be a hold over until you are able to talk to a hematology about your recent labs. Telehealth appt. could be good if they have your labs. Let them know your concerns. They may not be taking your bone health into account.

Yes, steroids are horrible, but I suppose sometimes a necessary evil. I understand your hesitation. What you have been prescribed is not long term, though could turn into that if it works for you... Short term I think you figure out what is important to you and find the balance. If you start spontaneously bleeding, you may have to take steroids for a bit. However, your drops are slow and you are still in double digits, so that's good. So seems you have time to figure this out. Any symptoms?

I would ask about other ITP medications. As, I'm sure you know, a medication that works for me, may do nothing for you. There is Promacta, Nplate... Sometimes infusions such as rituximab, IVIg (though usually for emergencies)... Depends on what helps your counts, what works for you schedule and time-wise, and what they are willing to prescribe. Steriods is certainly not the only option.

Best ~

Hi b2h,
Many thanks for your post. Good advice. Thanks so much.

SusieJ

Hi, I have been "low but stable" and not requiring treatments for my ITP for the past 15 years (first diagnosed in 2010).  However my numbers have been on a slow creep downward -- I used to hover in the 70-80 range with occasional dips into the 60s and 50s, but in the past 5 years I have stayed in the high 50s, low 60s.  When I got covid in 2023 my platelets jumped to 115, and then dropped immediately into the low 50s.  Lowest I had ever been.  I was supposed to have an endoscopy/colonoscopy this past July but my gastro doc cancelled the appt when they did a blood draw that showed platelets in the high 40s.  Went to my oncologist and his draw still had me in the 50s so that was good, but for the first time I started really researching treatment options because I realized that if I drop any lower, it makes it more difficult to do medical procedures I might need.

So in August I decided to try two "alternatives" (I wouldn't even call them treatments).  One, I had read about papaya, and I couldn't afford the papaya juice extract because of the cost, but I found some "Papaya Enzyme Complex" chewable pills at my local Walmart that were super cheap, so I started taking them -- 4 a day, along with my usual vitamins.  Two, I read something about how aspartame can impact platelets.  Friends, I am a diet soda fiend and I know it's not healthy, but it brings me joy, so I didn't try to quit cold turkey.  But I noticed that the "zero" sugar diet sodas have a combination of aspartame plus a different artificial sweetener.  So I switched to drinking those zero sugar versions whenever possible.

I just had a blood draw yesterday and I'm excited to report that my platelet count was 72.  That is a number I have not seen in over 5 years (excepting my covid anomaly)!!!  Is it the papaya enzyme complex supplement, or the decrease in aspartame?  I don't know, but I'm going to keep doing both.  I had talked to my oncologist about both things and he said he hadn't heard of either, but that it didn't hurt to try. 

TL/DR:  My platelets have gone up from the 50s into the 70s, and the only thing I've been doing different is taking Papaya Enzyme Complex supplements and drinking zero sugar diet sodas instead of aspartame-only  diet sodas.

I've just had my third treatment of rituximab. Excellent effect on platelet count - first treatment increased 20ish to 87, second up to 129, third treatment today, blood test next week. No serious side effects, but two unpleasant ones - weight increase (not huge, but uncomfortable) and fatigue (luckily I'm retired so not too disastrous, I do everything I always do, but a bit less of it, and I sleep 12 hours !!! every night). All worth it, if the count stays up-ish 🤞

Hi, just a quick update: I've been relatively stable without meds for a couple years since I stopped eating vegan and started eating fish again (not sure if it was the cause). Then they also found out I have TG6 and DGP antibodies, not eating gluten has helped with a lot of symptoms like joint pain, not sure if with my blood too... 
Am usually between 90 & 140 now, a couple weeks ago was 80, but may be coincidence. I quit birth control a half year ago, that might change something...
That's all for now.
(f., 44 y., ITP diagnosis with 13000 in 2019, started a few years earlier. Past treatments: dexa, pred, nplate, revolade/promacta)

My hair stopped growing for 2 years under armpits and on my head, but I can't say whether it was because of the meds or because of something else, because I had several things going on. But I did take NPlate and shortly after Revolade, it started around then...

Hello Susie,

I too am in the UK, and I was diagnosed with ITP in May of this year (2024), at the age of 73. So I am a newbie to the world of ITP!

If you read other threads and the personal stories on this web site, you will notice that the results of treatment are extremely variable. And this was the case for me too.

After I was diagnosed, I was treated with Prednisolone (a daily tablet), plus various other medications (Omeprazole, Aciclovir, Azithromycin, Colecalciferol). This increased my platelet count, but the improvement lasted for only 2-3 weeks, after which my platelet count started decreasing again.

The medical team then decided to discontinue the Prednisolone, and switched me to Romiplostim (a weekly subcutaneous injection) plus a daily Mycophenolate tablet. This initially boosted my platelet count, but the improvement lasted for only 3-4 weeks, after which my platelet count started decreasing again.

So the medical team discontinued the Romiplostim and switched me to Rituximab. This is administered as an infusion. You sit in a treatment chair in the Day Care Ward, and a pump is connected to a vein in your arm to pump the Rituximab in. Because Rituximab can cause an adverse reaction in some people, they give you tablets to damp down your immune system before starting the infusion. I think these tablets are Piriton and Paracetamol. They also start the infusion with a very low dosage for 30 minutes, with a nurse checking that you still feel well. If all is OK, they double the dosage rate for another 30 minutes. This is repeated several times, each time doubling the dosage rate. Those who did maths at university will realise that the last dose by itself is marginally bigger than all of the other doses combined.

I had four Rituximab treatments, spread over four weeks. I was pleased to find that after the last treatment my platelet count was back to normal. No additional treatments of any sort are required. However, Rituximab is not without its disadvantages. Specifically, it works by eliminating the naughty B cells in your blood. The B cells are the ones that destroy your platelets. With no B cells you are now "immune suppressed", and are vulnerable to contracting opportunistic infections. It also means that you cannot have any vaccinations that use vaccines with live components. As it happens, the influenza and Covid vaccinations that are offered annually in the UK do not involve live components, and so are safe. But with a suppressed immune system, those vaccines are likely to be ineffective.

Your B-cell count does not remain suppressed permanently. It will recover gradually over the next 6-9 months. This means that your platelet count might start decreasing again. There is a review paper available on the internet here:

[url] pmc.ncbi.nlm.nih.gov/articles/PMC6545833/ [/url]

The authors review all of the papers published by clinical teams reporting the results of using Rituximab in their treatments of ITP patients. The reviewers concluded that in those patients that showed remission after the Rituximab infusions (that includes me!):

- Only 40% still showed remission after 2 years.
- Only 20% still showed remission after 5 years.

I might be lucky and be one of the 20% where remission lasts 5 years, but it is more likely that I will be one of the 60% for whom remission does not even last 2 years. What happens then? I don't know!

All of the above treatments were carried out by the NHS (the National Health Service in the UK), and I don't have any criticisms concerning the speed or quality of the treatments (but your experience of the NHS may be very different from mine). None of the treatments caused me any problems with side effects, but that is not the case for everyone (as reported elsewhere on this web site).

As an earlier respondent mentioned, you should certainly tell your haematology consultant about your osteoporosis problem, as it could well cause him/her to change their suggested treatment. Which treatment to accept is not an easy choice, and I really hope that this works out well for you.

-- from Clive in the UK

Hi ,
That's good to hear , Could you please let us know the name of the supplement and ingredients? I want to try that instead of putting all these poisonous drugs into my body, I am really scared as to what damage these will cause in the long run.

Good for you!! I think my hematologist would say that 80k is the same as your 90k.
Keep it up - I'm happy for you!!

Hi everyone!
I have chronic ITP and I've recently been considering the possibility that I have comorbid mastocytosis or another mast cell disorder.
A study I read hypothesised that for some people ITP might be caused by mast cell disorders (unfortunately I lost the link).
The mayo clinic also lists bleeding disorders as a symptom of systemic mastocytosis.
I was wondering if anyone here has experience of ITP alongside a mast cell disorder or HaT (hereditary alpha-tryptasemia)?

Hi Cathy,
I am interested to know if you have any update on your potential mast cell disorder. I have a lot of symptoms that could indicate mcas, mastocytosis, or HaT (Hereditary alpha-tryptasemia) but it is hard to know for sure as these symptoms can be caused by so many things.
Hope you are well,
Raph

Hi Susie,

I hope you are getting on alright. I recently found this patient leaflet which I thought might be useful to you. It contains information about treatment options and supporting ITP patients to be involved in treatment decisions. [ www.itpsupport.org.uk/download/ITP%20Shared%20Decision%20Making%20Toolkit%20FINAL%20Version.pdf ] If you do find it helpful, maybe you could fill it in and send it to your haematologist?

If you are still looking for treatment suggestions, I would also mention eltrombopag or similar medications as non-steroid options. These stimulate your bone marrow to make more platelets (if I remember correctly) and personally I had no side effects from eltrombopag at all, and it worked for me for years. I don't know if there are any contraindications for osteoporosis or other medications you may be on, though.

In terms of blood test results: if you get your bloods done at your GP practice, you could ask of they have online services, such as the NHS app. If so, you might be able to access your blood results on there. You could also ask the reception team at your hospital department (haematology?) if there is any way for you to request blood test results. Ideally they would assign you a specialist nurse who you could contact.

Best Wishes,
Raph

HI, Jeff. Love the new look, it's rich looking.
Two things I noticed today, I can't mark all the posts that are old as read and on the main page, it has drbean's avatar instead of mine.
Nothing too major, just more curious as to how the avatar got switched. Hope you can fix it.
Thanks for all your hard work!

Not sure what happened, but everything is back to normal!

Nope, not fixed! Went back the way it was when I made my original post.

Neither of those two suggestions worked. Your profile came up under my picture (right above this post and one a few posts back) and the same with the link you posted. Any other suggestions?