I couldn't edit my post to add:

I have checked the same "new" (no longer new as I have looked at it a number of times now) reply in the adults section and it still shows it not read - there is no where to click on "mark all read" -

Sorry to butt in here Cindy/Jeff - but it won't let me send a message in this section, all I could put in was the subject

I was able to send a message to Margaret in a different thread but I could NOT edit it to make a sentence make more sense
This has just been since the new update

I tried to edit my response to you Margaret to ask if ....... did your hematologist give you a good reason to go off Mychophenlate and use Rituximab
Sorry my fingers didn't get it right in the first post and I couldn't edit it to make it right

Margaret did you tell your hematologist you did not want to go off Mychophenlate - did give you good reason to go off it and use Rituximab? Do you have problems when your count is in the upper 50s? How long after completing the 4 weeks of Rituximab did your count drop to the 50s? Is it possible that you could still have a good response to Rituximab?

ITP is totally unpredictable. I felt very bad to hear that rituximab didn't help with your ITP. And hope MMF kicks in faster. Mine MMF has again started working I guess.I had a cold again 3 weeks ago and at that time my count was 46. I got a test last week and it showed 73. It's following the same trajectory it did like last year. I asked my doc about long term exposure to MMF and what effects it can have. He said it's a very safe medicine unless you have side effects from it. My only problem with mmf currently is increased risk of skin cancer as mentioned on the box. I'll ask my doc the next time I visit him regarding this.
Hoping you get a response soon..

Thanks Aaklon. I didn't get the boost I hoped for from Rituximab. So I'm now back on Mycophenolate, which I didn't really want to discontinue in July. But it will probably take two months to kick in again.
There were several possibilities considered by the haemotologist but ultimately returning to the one which worked for me seems better than experimenting with others.
I hope your count is going well

After completing 4 weeks of Rituximab - I had good results for two weeks (22>85>129) but then two drops (>58>56). Still a reasonable count, but quite disappointing after the early improvement. I'm now back on Mychophenlate, which I really didn't want to discontinue when the haemotologist took me off it.

I did click my profile picture and it brought up your info. I couldn't even find the "manage your account" button. But like I said, all seems to be fine right now. If I have any more issues, I'll let you know.

Not sure what happened, if you did something or it just needed time, but all seems to be working right now, so thanks!

Today I'm Margaret. I went to "My Profile" and all the information there is right. But when I clicked on edit, your information came up again.

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?

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

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

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!

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 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 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)?

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 ,
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.

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

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...

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)

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, 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.

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

SusieJ

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 ~

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