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TOPIC: ITP for 2nd time, worried and want to find out why

ITP for 2nd time, worried and want to find out why 1 year 11 months ago #64334

  • Johnny
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Hi from Sweden. Stumpled upon this great site after doing some researching on ITP. Please bare with me, it's a bit of rambling, because I need to "talk" about it. There are questions in this text. But I'm aware there might be no good answers. =/

I have an 8.5 year old daughter with acute, and quite possibly now chronic, ITP. She's been below <5 for 2 months (we measure a bit differently here, normal values are around 200-300 for comparison). Below 5 is basically "unmeasurable" as the doctors say. Her spleen is very big right now too as a side effect. She's had this ITP "phase" since jan/feb and the reason I write here is I started reading just now about the confirmed link between MMR (measles etc vaccine) and ITP. I've had my suspicions up until now. She got her last MMR vaccine shot in january.... and just afterwards she started getting these ITP issues again. I say again, because she had this 3-4 years ago as well. It took her a better part of a year to self heal from ITP, but it wasn't as "bad" of an ITP as this time. Before the vaccine shot in jan, she also started school last year (= bacteria and viruses... as we all know) and then mid winter got this last MMR vaccine shot. And feb/mar she also got the seasonal Flu.... on top of it all... it wasn't fun! Then ITP got worse and worse....

Note, When she had ITP 3-4 y ago it was somewhat the same scenario I believe. Vaccines, flu, bactieria and viral infections...

Apart from this, my daughter also is handicapped mentally, undiagnosed "problems" from birth noticed during pregnancy... born 8 weeks early and 40% underweight as well. She was really tiny. She's still the size of a 1-2 y old, we carry her around, she can't walk or talk or do anything on her own. She's a lovely happy kid, when can be. In her own way. She also has diabetes type 1 since age of 1, have had bad atopic eczema first years of her life, leading to very bad sleep problems that's taken a toll on me. She's had countless pneumonia in her life due to issues with her airways... I got tired of giving her antiobiotics, AFTER she got sick. Just reactionary management. Didn't like it. I eventually asked the doctor why not give her antibiotics... always, to help her out a bit. And to my suprise the doctor said: "OK, let's try". So since then (3 y ago) she's been on antibiotics taking it 3 times a week, a fairly small dose, just to keep the worst off. It's actually helped, a whole lot. She now can get a simple cold, without it turning into pneumonia everytime. She's on Azithromax (azithromycin?).

My reason for posting here..., is partially to just talk about it. And I'm curious, am I possibly on to something? Is there a test to be done on her to somehow see what she reacted to, or reacts to? Her immune system is currently so efficient that even when given pure thrombocytes in IV, they don't stay even 1 hour in her system.... She was hospitalized for a few days last week as she was very bruised... and dehydrated. All IVs broke her veins, and she's just a mess right now. No more IVs can be used on her. We desperately tried to raise the thrombocytes count enough for surgery to put in a portacath. But it was unsuccessful. She was also given "privigen" via IV a few times, but it had no result during these days. A week after we're now at home, with very low and unmeasurable count of thrombocytes ... and she's starting again to have bleeding symptoms meaning we will have to go to the hospital soon... but there will be no treatment available for her...... no medicines simply works anymore, lasts or is even humane to give her due to no IVs can not be inserted without a lot of pain. She was anesthetized to insert an IV (too painful otherwise) but there was complications and they had to put a tube down her throat leading to lacerations on tounge etc and no she's not been wanting to eat or drink normally due to her throat being so sore.

She's been on Revolade also for almost 2 months, but it hasn't helped. Instead her blood value (hb) dropped to 60 and during last week's drama revolade was put on a pause and her values increased to 83 this week.

We might try cortizone again but since she has diabetes type 1, it's not a great option. She's had a high dosage, 3 day thing, earlier this year but it had no effect.

My mind set is to just power on, but as I'm a programmer by profession (i still work full time......), tech nerd and analytical by nature, I really want to understand this ITP. It calms me down knowing how stuff works even though it kind of is beyond scope of comprehension. I just don't like giving reactionary treatments "after the fact". I want to see proactive solutions, if possible ofc, like I mentioned about me, weirdly, recommending the doctor (why did i have to do that?) to just subscribe continious antiobiotics proactively. That worked wonders and has made life a lot easier overall. Now it's just this ITP thing, but I know ITP is a completely different thing and it's complicated.

I know a lot of you out there might've gone through the same thing I'm doing. Is this a path I should continue, or just be more accepting and let go? Because with no treatment, what is gonna happen to my daughter if her blood values stays so low? Will organs start failing? I'm not sure her doctors are giving me the straight answer I want to hear. It's a lot of softened words. What is death from ITP like? What are the first signs I should look for? What can I do?

Thx for reading this far. Any comment would be appreciated. :)

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ITP for 2nd time, worried and want to find out why 1 year 11 months ago #64336

  • Sandi
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Johnny:

Unfortunately, medicine does not have answers like tech does. It's normal to try to figure out 'cause', but that can be difficult with medical issues.

You're right, the MMR can and does cause ITP (all vaccines have that possibility). Antibiotics do too, so you might want to look and see if Azithromax lists it as well. Your daughter seems to have several autoimmune issues going on and sometimes the answer is to improve the health of the immune system. The medical profession doesn't look at it from that perspective, so in addition to her doctors, why not look into naturopathic healers? At this point, it couldn't hurt.

Platelet transfusions do not work for most people with ITP. I'm not surprised that her counts stay low after that.

Low counts do not necessarily equal death. Please stay hopeful that she will get through this. You'd want to look for symptoms of bleeding such as blood in the urine or stool, or symptoms of a stroke which could indicate a bleed in the brain. Her organs should not just start to fail due to ITP unless she has severe bleeding that cannot be stopped. Things could start to turn around at any time for the better.

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ITP for 2nd time, worried and want to find out why 1 year 11 months ago #64339

  • Hal9000
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Hello Johnny in Switzerland. Many years ago I stayed a couple of days in Zurich. Very nice place. Lots of opulence.

First, I am very sorry to hear all the things your daughter is going through. All we can do is try our hardest when challenged.

You may have seen my ITP treatments table. Elements of your story give me enough to make a guess as to what might be going on and thus what might help. The main assumption in the table is that only one antibody is contributing to the ITP. This can be a false assumption when one starts responding to fewer ITP medications then what one did before.

You mention 'privigen', aka IVIG. If her count response rose up just day or two (much less than a week) then that would indicate row 2 of the table. If she also isn't responding to steroids (cortizone?) then that would identify row 2a and eliminate row 2b. Perhaps you mean prednisone instead of cortizone.

For row 2 the treatment combination of Revolade (or Nplate) and steroids works well. Some doctors are familiar with that combination and know how to use it, many are not. Perhaps going back to her old dose of Revolade and then combining with a moderate amount of steroids would be a starting point.

Good luck...

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ITP for 2nd time, worried and want to find out why 1 year 11 months ago #64343

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Thx Sandi and Hal for your replies. Hal, Sweden btw, not Switzerland. Common mix up haha :) both great places I agree!

Sandi:
I actually live in a part of Sweden with a lot of naturopathic focus, from farming to treatment of illnesses. It's actually a huge community of everything from school, kindergarten and food markets and treatment centers as well as taking care of handicapped people. Sadly some of their beliefs also comes with the fact they dont think vaccines are good, at all. So they don't give their children vaccine shots. This means we've had a few outbreaks of small pots, measles etc.... My daughter is actually attending a special needs school run by this very community. She started last fall as mentioned. I shouldn't say there are more germs and viruses there than in other schools, but the percentage of unvaccinated kids (and adults) is very high compared to state driven schools.
Google: anthropology (stems from Germany originally)

A friend reached out just recently and suggested to give cannabinoid (CBD) treatment. It's immune suppressing, just like steroiods. Supposed to "calm down" the immune system enough to let "heal" itself. In Sweden I cannot get this stuff in a legal way. I've actually spoken to one of her hematologic doctors about it and she simpy couldn't say anything as there are no "facts" or actual reviews focusing on just CBD as a treatment for basically anything. So a dead end as far as trying it out via doctors...
Is that a method that people have tried in the US and somehow compared "before and after" on ITP patients?

Hal:
(edit, saw table now on here =)
I can't say I'm techy enough to follow your table. What was your conclusion given more info, maybe, with this extra post here?

The english word I probably meant with "cortisone" is steroids yes. I believe her does was 60 mg per day. Her weight is 20 kg. It was a 3 day thing. Her diabetes and hence blood sugar levels sky rocketed. I managed to handle it with 24 h by increasing her normal 12 h doses by 4 x... it's an insane amount of insulin to be honest. I have to give it in several shots even.

I understand that trombocytes are removed, very efficiently so, by her spleen. They're coated with "stuff" that the body will treat as something to rid.

Can I with your table come up with a possible reason for what triggered her ITP? I'm right now fairly certain that the MMR shot + that seasonal Flu ... triggered the ITP. I understand that vaccines actually stay in the body for a long time. You are supposed to get protection over a sustained period of time. Upwards 10 years I've read.
So in the case of my daughter, might the MMR shot's different substances be triggering the ITP for a long time coming?

And also, since the ITP was triggered... and not just "suddenly" happening (as it can, also for kids or adults with no underlaying auto immune issues like my daughter), can the ITP calm down (as it did before) also naturally as 'what is currently triggering the ITP' fades out of her system? Understand what I mean. :)

Last note on Revolade, the issue is that it appears that the Revolade first of all didnt increase her trombocyte levels, but it appears... it also dropped her blood count leading to blood anemia. She was at 60 and dropping. She's now off revolade since a week and a half or so and her lvls are increasing (was 83 on monday).

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ITP for 2nd time, worried and want to find out why 1 year 11 months ago #64344

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Oh I forgot to add and ask. She is getting a lot of small 'petechiae' (should be right english word). Small bleedings, along her legs. Since she's sitting down a lot and is on the floor bouncing up and down. But also in her face she has these small dots almost looking like very dark freckles. These dont go away unless she does get a treatment.
So now that she won't get any more treatments.... until she "self heal"..... I'm a bit worried it'll look pretty horrendous after a while? And bruices will add up. She's constantly given insulin too the manual way (with a pen).

This is the part I'm very unsure about. Will she get complications from never healing bruises and petechiae?

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ITP for 2nd time, worried and want to find out why 1 year 11 months ago #64349

  • tj1989
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Hi, sorry to hear about your daughter's complicate situation. We tried several "natural" thing, and never had treatment. My son's count and symptom both improved. I am not sure whether it is what we did or he just our grow it, but since it is healthy and natural, I think it doesn't hurt if you want to give it a try.
We did a food allergy test, and found he is sensitive (not allergic) to diary, egg and gluten, so we eliminated these food (as mush as we can, not strictly) from his diet. I also added papaya fruit, probiotics supplement, child vitamin that has high b12, kale, daily beet+avocado+banana smoothie. He gained a lot of weight (from 5% percentile to 30%), and his counts improved slowly. I hope your daughter get better soon.

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ITP for 2nd time, worried and want to find out why 1 year 11 months ago #64351

  • maria3132
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Hej. (Is all I can say.) We have family in Smalland. :)
I am so sorry to hear about your daughter and what you have been through. I am like you, trying to analyze things for myself, and I don't see anything wrong with that. Once you or a loved one has had a disease, I believe you're quickly just as knowledgeable as most doctors about your particular case, perhaps more.

Are they able to consider other treatments (NPlate, Promacta, etc.)? Would you consider a splenectomy, has that been discussed at all with you? Is she being treated at a pediatric center? Would you consider getting a second opinion? It may not be very Swedish to go outside of the local system (which I think works super well for the most part), but sometimes you're forced to think out of the box and look for solutions in unlikely places.

About the bruises and petechiae - they are not dangerous, although I'm sure her body is using up some energy to heal them up. If you are not seeing any wet bleeding (nose bleeds, or blood blisters in her mouth, or eyes), it is most likely that she is safe from spontaneous internal bleeding. People over 60 are most at risk of that.

Please don't give up yet. She recovered once, perhaps she will again. We have family friends whose daughter suffered from ITP from the age of 13 until 22, and it came and went every few years. She's 36 now with normal counts. The "chronic" label is now not even given until after 12 months have gone by and we have been told by my son's doctors that it's entirely possible to have multiple acute episodes. I hope you can find doctors that you can trust.

Hang in there & hej då!

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ITP for 2nd time, worried and want to find out why 1 year 11 months ago #64355

  • Hal9000
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Johnny wrote: Thx Sandi and Hal for your replies. Hal, Sweden btw, not Switzerland. Common mix up haha :) both great places I agree!

Oops, my confusion.

... I believe her does was 60 mg per day. Her weight is 20 kg. It was a 3 day thing.

Oh my, that sounds like an unusually high dose of steroids.

... Can I with your table come up with a possible reason for what triggered her ITP? I'm right now fairly certain that the MMR shot + that seasonal Flu ... triggered the ITP. I understand that vaccines actually stay in the body for a long time. You are supposed to get protection over a sustained period of time. Upwards 10 years I've read.

I haven't come up with anything substantive on ITP triggers - yet. Right, it is very reasonable to assume ITP was caused by the MMR shot. Sandi knows quite a bit more than I on vaccines and related.

So in the case of my daughter, might the MMR shot's different substances be triggering the ITP for a long time coming?

As I understand, it is when one's immune system is trying different things/proteins to kill the vaccine is when it makes the (positive feedback) mistake and begins consuming platelets. Absence of the vaccine doesn't cause the feedback to stop. Removing old platelets from circulation is a normal occurrence in folks with or without ITP.

The idea of treating ITP with immune suppressants, like steroids, (and cause remission) is to interfere with the feedback long enough for it to stop occurring. Kind of like putting your hand over the microphone in a PA system when there is a screeching feedback sound. Hopefully the screeching will stay away when your hand is removed (the treatment is stopped).

And also, since the ITP was triggered... and not just "suddenly" happening (as it can, also for kids or adults with no underlaying auto immune issues like my daughter), can the ITP calm down (as it did before) also naturally as 'what is currently triggering the ITP' fades out of her system? Understand what I mean. :)

Children respond differently then adults. They often go into remission out of the blue (without treatment).

Last note on Revolade, the issue is that it appears that the Revolade first of all didnt increase her trombocyte levels, but it appears... it also dropped her blood count leading to blood anemia. She was at 60 and dropping. She's now off revolade since a week and a half or so and her lvls are increasing (was 83 on monday).

Oh, ok. For some reason I was thinking her platelet/thrombocyte count was 83 on Revolade. What dose of Revolade was she on? Was it 25mg, or something higher? I think in some places it is harder to get the higher doses, in which case the doctors switch to Nplate. Has the doctor mentioned trying Nplate?

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ITP for 2nd time, worried and want to find out why 1 year 11 months ago #64361

  • Johnny
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This an answer to all at once. :)

Would eating more vitamins really affect the bodys immune response? Sure, they say "eating X vitamin boosts the immune system". But, in this case we want the opposite effect. So eating "healthy" feels like it won't do anything for ITP, more than keeping her healthy in other senses ofc!

She's had sudden nose bleed a few months ago.

Her gum is easily scratched, and is currently pretty bruised so it bothers her a bit and does bleed sometimes during night. Her "drool during night" is sometimes redish from blood from her mouth. Also have to be extremely careful brushing her teeth, or it will cause blisters on the gum and also tounge. She has at least visible 2 blisters right now on her tounge, but they are at least slowly healing...

Hal, her Revolade dose was 50 mg per day (two 25mg pills).

The steroid does was a "high dose treatment" in hope to force a reaction. She got a long steroid dose 3 years ago, but she got ALL the side effects ... bloated, pancake face, blood sugar was crap. She got cataract in BOTH her eyes and was BLIND for a few weeks. =/ she got surgery since and had one relapse requiring extra surgery. She can see, but as "tunnel vision".

This girl has been through so much, but she's always happy. She actually does not understand how sick she is. When she is not happy and playing, then we know she's really really sick. So during this ITP, she's been happy 99% of the time.

Yyes, I'm pretty certain about the MMR vaccince. In retrospect.... I wish she had not taken that vaccine. I don't think there are more vaccines for her, but if there are... I'll probably decline them in the future. Doesn't seem worth it in her case.

I haven't heard of NPlate, but I read up on it now and the side effects seem pretty severe and risky. Anyone with experience here? My daughter seem to get everything everyone warns about. She's that 1 and 100.000 child.... that is on the labels you know "only 1 in 100.000 gets x side effect"... she's that one haha.

Thx for all the replies.

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ITP for 2nd time, worried and want to find out why 1 year 11 months ago #64363

  • maria3132
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Johnny I'm so sorry to hear about the wet bleeding from her nose and in her mouth. Have you considered having her wear a soft (EVA foam) helmet?

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ITP for 2nd time, worried and want to find out why 1 year 11 months ago #64365

  • Sandi
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Johnny:

The way I understand it, vitamins that 'boost' the immune system will not make ITP worse. ITP isn't exactly an 'overactive' immune system that needs calmed, it's more of a 'misfiring' of the immune system. Having a healthy immune system helps overall health in many ways, including fighting disease.

I just read this quote tonight: "Rudolf Virchow, another 19th-century scientist (dubbed the Father of Pathology), wrote, “If I could live my life over again, I would devote it to proving that germs seek their natural habitat—diseased tissue— rather than being the cause of diseased tissue; e.g. mosquitoes seek the stagnant water, but do not cause the pool to become stagnant.”

I love that. It basically means that a healthy immune system will generally not become sick; conditions in the body have to be poor in the first place for the immune system to fail. Of course, there are a lot of reasons for that and finding and fixing the problem is the trick.

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ITP for 2nd time, worried and want to find out why 1 year 11 months ago #64367

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Sandi that reminds me. She's always had a bloated belly and had problems in general with pooping.

I did read before posting this thread that germs in the intestines may be a trigger.

Since she's had a lot of antibiotics, which does cause chaos in the body as it effectively cleans everything. She's had sponge reactions on her tongue etc.

She might simply have a lot going on in her system?

Is there a test to see if you carry a lot of germs?

Oh oh, another thing! She's had molluscs for 3-4 years! Normally the go away within weeks or months. She's had drapes of them... It's no longer many left, they do seem to pop when her itp is bad.

Molluscs are viruses.... And her system is so "weak" that it takes her years to combat them.

She has node bleed today, dried blood at the nossles. The petechiaes are also more intense...

But honestly can't hospitalize her, no medicine works.... =/

With what I said above, anything to dig into and research more?

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ITP for 2nd time, worried and want to find out why 1 year 11 months ago #64372

  • Sandi
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Johnny:

I never used to believe in naturopathic treatments. I thought it was a crock and avoided anything related to it. After years of feeling failed by traditional medicine which only made things worse, I started looking at alternatives. I've since changed my mind. I'm not advising you to stop taking her to doctors. I'm suggesting that you look into possible alternative methods of improving health. Yes, antibiotics destroy the gut and the body's microbiome. I've learned a lot from these two doctors about the health of the immune system.

www.youtube.com/watch?v=JFT5rdwrNV0&t=131s

www.youtube.com/watch?v=nRCcFe7DTRA

I started taking a high dose of Vitamin C daily about a year and a half ago. Since I started taking it, I have not gotten sick. I usually got bronchitis twice a year that would last for months. I have not had it once. Vitamin C is so under-rated. It can also cause loose stools in higher doses, so it may help your daughter's constipation. Vitamin C can also strengthen blood vessels which may help with her bleeding symptoms.

Probiotics can also be very helpful in restoring gut health, especially when one uses antibiotics.

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ITP for 2nd time, worried and want to find out why 1 year 11 months ago #64375

  • Hal9000
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Johnny, the side effects of Nplate (aka Romiplostim) are generally less/fewer than the side effects of Revolade. Nplate is a once a week injection. There is a population of folks that DO NOT respond to Revolade but DO respond to Nplate. Perhaps that is the case with your daughter.

When you mention 'hb' being low with Revolade earlier, do you mean 'Hemoglobin' level? That is, the iron levels in red blood cells? I don't recall low hemoglobin levels being a side effect of Revolade. Normally hemoglobin/iron levels fall when one bleeds a lot.

If Revolade was not working then perhaps she was bleeding some and the bleeding is what caused the low hemoglobin level.

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ITP for 2nd time, worried and want to find out why 1 year 11 months ago #64409

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Was at doctors today and was basically remided that the situation is not good. She has a lot of bruises now and some bleedings especially in mouth. Not fun, but she doesn't seem to bothered about.

So at the doctor she was given a new medicine, Neb... something. Forgot it when I got home haha. A single shot to her leg. They said it works simililarily to Nplate, which I did ask about. I then asked what the difference was between Nplate and what she was given and they said that Nplate works the same way Revolade does and since she didnt respond to Revolade they'll try this alternative medicin.

Will take blood tests later this week (friday) so that 4-5 days will have passed and we'll see if she reacts to it in any good way.

I asked to take a full set of vitamin tests and also extra tests to see how her intestines performs. So will be interesting to see the results from that.

I did give them some harsh words and slap on their fingers for not listening to me 2-3 months ago when I asked them to please get her a portacath. "just in case". They didnt even discuss, just waved it off as "not needed". And now see where we're at.... not able to give her IV without a forced entry into the leg / bone marrow or in her neck. yay for that.. eh.

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ITP for 2nd time, worried and want to find out why 1 year 11 months ago #64414

  • Sandi
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I can't think of any treatment that is similar to N-Plate and given by injection. I wish you could remember what it was.

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ITP for 2nd time, worried and want to find out why 1 year 11 months ago #64426

  • maria3132
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Johnny, glad to hear you have been advocating for her with the docs. I feel like we all have to take things into our own hands, more or less -- no one is following our / our kids' cases more closely.

I'd also be interested in knowing the name of the medication you have been given. Keeping fingers firmly crossed for you and your daughter.

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ITP for 2nd time, worried and want to find out why 1 year 11 months ago #64475

  • Johnny
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I called the doctor regarding the name of the medicine and it's called: Neupogen

We are to do blood tests today but won't get the result until monday.

The problem right now is that since my daughter doesn't understand the pain she has and why it happens. So she's got a lot of blisters now and stopped eating because it hurts too much. Not very good as eventually she'll be become dehydrated and requires help... and help she cannot get via IV's... bah...

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ITP for 2nd time, worried and want to find out why 1 year 11 months ago #64488

  • Sandi
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Neupogen is to raise white cells, not platelets.

Neupogen (filgrastim) is a man-made form of a protein that stimulates the growth of white blood cells in your body. White blood cells help your body fight against infection.
Neupogen is used to treat neutropenia, a lack of certain white blood cells caused by cancer, bone marrow transplant, receiving chemotherapy, or by other conditions.

www.drugs.com/neupogen.html

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ITP for 2nd time, worried and want to find out why 1 year 11 months ago #64489

  • Johnny
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Yeah I don't understand too much of that. But it's what I guessed, just a wild guessing from doctors and they're not very upfront about that. "let's try this" and don't tell the dad why we do it or our expectations. Bah. Instead dad googles it, asks on internet... bah!

Mainly bummed over the fact that ITP is such an untreatable thing. Nothing really heals it.

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ITP for 2nd time, worried and want to find out why 1 year 11 months ago #64490

  • maria3132
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Johnny, hi. Have been thinking of you and your daughter.
I don't have much advice, I'm afraid. I will say this, in case it's an option for you - I started supplementing my kid's diet with papaya leaf extract. His counts at the last checkup, 11 days after the last IVIG, were 48,000. Two days after that, he seems to be holding strong (no new bruises or petechiae). I'm not saying the papaya is working, but it may be, and it's not hurting. I ordered the brand TJ suggested (no alcohol and no additives except plant glycerin). Kid takes it without a lot of protest, but you could also mix it with juice. I don't know how easily you can get it in Sweden. So much hoping for your daughter's quick turnaround and full recovery.

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ITP for 2nd time, worried and want to find out why 1 year 11 months ago #64491

  • maria3132
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On an unrelated note, since you mentioned blood sugar issues, is she taking any aspartame? Apparently it can trigger ITP; you probably know this already.

On neupogen, here's another internet discussion (so take with grain of salt), but doesn't sound like the ideal treatment:https://www.mds-foundation.org/forums/topic/platelet-counts-and-neupogenneulasta/

One more question: if she's able to get injections, why not eltrombopag (Promacta)?

You may want to take this to the doctor: www.nature.com/articles/s41598-017-19099-8

Finally, are you able to get a second opinion from another doctor?

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ITP for 2nd time, worried and want to find out why 1 year 11 months ago #64503

  • Johnny
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Things aren't great. It's a biweekly thing between me and the mom (since 1.5 years ago) and got a text early this morning that my daughter has been screaming all night into her pillow. Maybe in pain, but probably mostly in discomfort. It's breaking my heart not being able to understand her fully, and she can't speak or communicate her needs. Her brain is ... very small and missing the brainstem and stuff. She's at the most like a 6 month IQ wise. The mom feels ready to give up... and can't go on with these sleep less nights for much longer. I'm the one that has basically always taken nights these past 8 years. So I'm used to bad sleep. I've got memory losses etc from it. Whole chunks of time from last 8 years and further back is gone. I also don't remember details I feel I should remember that happened just recently. I'm afraid I've taken permanent damage from it.

I don't know if this Neupogen is giving my daughter itchyness or uncomfortable sensations in her body. But it does feel like she's been "acting" strange this week, hitting herself in the face (not self harm, but for attention) or being very upset on and off.

Thx Maria. Did read that and it's not very reassuring... feels like a treatment not at all for her ITP but to help her fight infections in general. They spoke nothing about that except for wanting to give her Bactrim (antibiotics), but from experience that gives her such a bad stumach. She flushes everything and it skins her bottoms and that surely would be a bad mistake when she's so easily bruised and heals so slowly.

I guess as far as treating ITP no doctor really has a cure for it so changing to another hospital won't work.

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ITP for 2nd time, worried and want to find out why 1 year 11 months ago #64507

  • Hal9000
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Bactrim? Was just reading another member's comments on that. Take a look here:
pdsa.org/discussion-group/7-treatment-general/28460-example-advocating-for-the-care-you-want.html#45825

Spoiler alert. 'MatthewR' resolved his ITP in just a few short weeks by taking Nplate. He did not respond to steroids or IVIG. Sound familiar? I'd inform your doctor that though Nplate acts similarly to Promacta, it never the less IS DIFFERENT. Again, there is a population of ITP'ers that do not respond to Promacta but do respond to Nplate. One example is 'jayinchicago', who posts here often.

Apparently Bactrim blocks folic acid. That should be easy to supplement/replace.

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ITP for 2nd time, worried and want to find out why 1 year 11 months ago #64509

  • Johnny
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Thank you Hal for digging up old good reads on this forum.

I will absolutely ask for Nplate, and I'll also ask to talk with the only actual expert within hemathology at the hospital. I've only heard about him, but he's very busy so I've never met him myself yet. But I will ask for a meeting or at least a call and talk about giving Nplate a try.

So Nplate is also a shot once a week? I was told out loud last week "since Revolade didnt work, Nplate won't either". But this was of the doctors with no real expertise in ITP. Just those that had time to talk...

I'm going to have contact with the hospital again on monday.

I really appreciate your help and general info and tips. :)
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ITP for 2nd time, worried and want to find out why 1 year 11 months ago #64519

  • Hal9000
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Johnny, I just happen to be reading about Matthew's experience with Bactrim shortly before you posted. Complete coincidence.

Right, Nplate is once a week. Is Neupogen once a week too? You might want to look up on drugs.com if the two shouldn't be used at the same time.

Do you suppose the doctors will be willing to stop Bactrim and move to something else? Sounds like you've got an up hill battle to even get them to try Nplate as well. Good luck with your next talk with them.

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ITP for 2nd time, worried and want to find out why 1 year 11 months ago #64521

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I already said No to Bactrim. Our experience is that her stomach can't take it and she gets really bad diarrhea that burns her bottoms.

The purpose of Bactrim was only to help fight off seasonal viruses / bacteria. We will stay on Azitromax as she has no reaction to that from what we know (she's had it for 3 years).

Neupogen is a once a week thing, but she's only had 1 shot and I believe she's not scheduled to have another. Instead they want to see how her body reacts to it. Her white blook count has been low. And also her hn value is still around the 70 mark (should be 100-130).

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ITP for 2nd time, worried and want to find out why 1 year 11 months ago #64523

  • Johnny
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Had to take her today and since last weekend her gum is now bleeding all over, and tongue has a pretty large blister with bleeding.

Her eyes have bleedings as well. Red eyes... Basically.

She's in alot of discomfort and can't sleep. =/

Feels like Neutrogena made zero difference to the irp as suspected.

I feel helpless... =/ can't and wont go to hospital. They can't do anything....

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ITP for 2nd time, worried and want to find out why 1 year 11 months ago #64524

  • maria3132
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Johnny, thinking of you. My heart breaks for her.

I do wonder if it might be worth at least a call to another doctor or hospital. Do any of the nearby health centers have support groups for parents of children dealing with difficult conditions? I wish there was some way to help you manage all this.

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ITP for 2nd time, worried and want to find out why 1 year 11 months ago #64526

  • Sandi
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Neupogen can cause bone pain and a few other symptoms. Were her white cells even low?
"Common side effects of Neupogen include: aching or pain in the bones and muscles, diarrhea, constipation, hair loss, headache, tired feeling, skin rash, nosebleeds, or injection site reactions (redness, swelling, itching, lumps or bruising)."

I hope she feels better soon.

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