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TOPIC: Questions for Those Experienced with ITP

Questions for Those Experienced with ITP 4 years 2 weeks ago #48887

  • DelnStyle
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Hi Emily and DeeDee.

I'm still hopeful of going the Decadron pulse route. I had a response, which was good, (63,000 last week) was the highest I'd been in months. I wouldn't mind seeing it that route had longer term success.

Here's my concern/worry/issue about NPlate/Promacta. I feel like once you begin taking these, they are 'maintenance' drugs. It seems like a 'band-aid' that will temporarily assist the platelets, but then your body will begin to rely on that as the 'standard bar' so to speak, and you'll always be on it for who knows long? At least, that's my understanding. That you are committed to taking Nplate or Promacta and then you can't get off of it.

With Decadron or even Rituxin for instance, at least you know there's an 'end point' for these drugs (even if they don't work) you may get off these at some point and your body's systems will hold.

That's my fear/concern/hestitation about NPlate and Promacta. Once I get on, I feel like I'll be stuck doing that for an extremely long time.

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Questions for Those Experienced with ITP 4 years 2 weeks ago #48889

  • Sandi
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Deln:

You could be on Promacta or N-Plate for a while. Some have achieved remission in a few months, some in a year or two and some never do. But it probably would give the most consistent counts once you get stabilized. Most people have reported that they finally felt that life became normal again once those meds began to work.

I can't tell you what to do, but the Dex pulses can be hard on the body and have long-term permanent side effects. I am seeing so many people go down the treatment line which takes time, money and much frustration, only to eventually end up on one of the TPO's anyway. Most of the time, the Dex pulses keep getting the same result that you just had.

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Questions for Those Experienced with ITP 4 years 2 weeks ago #48891

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Does NPlate/Promacta work similarly to a 'taper' in a sense that you get your counts to a stable number and then work backwards on dosage, and monitor platelet levels? Then, potentially work down towards getting off of it at some point?

I'm also concerned about the cost of these drugs too. It's so expensive to take these each year as well. It seems Promacta, since it's a pill, looks to be more of a pharmacy type product, where the NPlate might be similar to a Rituxin or IVIG where it's given at a provider's office I believe? Maybe there's a difference in insurance coverage.

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Questions for Those Experienced with ITP 4 years 2 weeks ago #48893

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My understanding is that you stay on the NPlate or Promacta at the same dosage if you have some consistent numbers. Since the goal is to stay around 50,000, if you are well above that, a decrease in dosage can occur and you just watch the numbers. So, as Sandi said, some people will stay on it long term, some will decrease dosage but stay on it long term and some will be able to taper off. For me, the emotional roller coaster of the highs and lows of numbers is really hard. I need to work full time and run my business. Consistency and some sense of normalcy is of paramount priority to me. Understand, that all treatment could also work for some time and then stop working. There is no magic pill and there is no right or wrong answer. You can keep trying the pulses and see what happens and if the result is not acceptable, then turn to something else. I, like you, like most everyone on the list, was a healthy, non-drug taking person before ITP. Its a new mindset to realize that our bodies are not working correctly and maybe a drug is the answer to help. You might also want to explore alternative therapies to help support the western medicine...like accupressure or Reiki...
Diagnosed Jan 2015 at age 50 with 13,000.

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Questions for Those Experienced with ITP 4 years 2 weeks ago #48894

  • Ann
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I was on Nplate for something like three years when my count suddenly went way high so I reduced the dose. Few weeks later really hight again, so reduced until down to the lowest dose. Then had to reduce more so went to one two weekly injection and then three weekly and then thought this is ridiculous so stopped and my count stayed up. I didn't have the problems you do with Nplate as I self injected but the same sort of remission happens with Promacta.

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Questions for Those Experienced with ITP 4 years 2 weeks ago #48895

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Del,
I should have also said that the insurance issue is a real one and you need to check out what it will cost. The Promacta falls under the drug plan and the NPlate falls under the rest of your medical plan. I am very fortunate to have great insurance that covers all drugs at 100% with no co-pay so the cost was not an issue. Also, I tried the Rituxan first because I thought if it worked, I could be drug free for some period of time. Sadly, it did not work so I exposed myself to all that toxicity and four Mondays off work and four Tuesdays with a blurry head, but oh well. Good luck with your decisions and health.
Diagnosed Jan 2015 at age 50 with 13,000.

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Questions for Those Experienced with ITP 4 years 2 weeks ago #48896

  • Sandi
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Yes, there can be a difference in coverage with those two meds. You'd have to go to the Dr's. office weekly to get the N-Plate shot. Hopefully soon, they will allow self injections like they do in the UK. It's not hard at all. I didn't have to inject N-Plate but I did have to inject Methotrexate once a week and at first I was scared to death. A nurse showed me at the office but I forgot by the time I got home. I YouTubed it and learned that way. It was easy and barely hurts.

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Questions for Those Experienced with ITP 4 years 2 weeks ago #48897

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I'm fervently hoping they won't allow self injections. It would then fall under the drug plan, be considered a "specialty" drug, and the copay would eat me alive. I'd have to go off of it.

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Questions for Those Experienced with ITP 4 years 2 weeks ago #48899

  • DelnStyle
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6/2/2015 Update:

So I spoke with the doctor.

I'm doing another 4 day Decadron pulse, starting tomorrow. Then I have a visit with him in about two weeks time.

I'm assuming this 'buys' me another 14 days. But, as always, I'm concerned (and likely will) just drop back down again in 14 - 18 days time. It's like I'm just 'borrowing time' right now. This is frustrating.

I guess, at least, I can get myself off the prednisone. I'm at 10 mg now, so in two weeks, I'll likely be off it, or at least down to 2.5 mg or something like that.

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Questions for Those Experienced with ITP 4 years 2 weeks ago #48900

  • Melinda
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What was your most recent count?
Never mind, I found it.

Good luck!

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Questions for Those Experienced with ITP 4 years 2 weeks ago #48901

  • Sandi
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Janet - I guess that could be true. I don't know much about the insurance end.

Deln - I'm glad that you have a plan. I hope this works out for you. Fingers crossed!

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Questions for Those Experienced with ITP 4 years 2 weeks ago #48905

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I had a favorable experience with NPlate, resulting in remission.

I was diagnosed with NPlate in January 2014, then a 34-year-old, having a platelet count of 1,000. I was unresponsive to either IVIG or prednisone, the latter of which we tried for about a month or two to no avail. Fortunately, I tolerated all the medication very well. The prednisone made me a bit jittery and hyperactive, but my wife was in her third trimester, so she appreciated my extra energy. But my platelets persisted below 10k. After a few bleeding episodes and another hospitalization, my hematologist and I discovered that I was very responsive to NPlate. I was on NPlate from about February/March to November 2014. I've not had any treatments since then.

For several months at the beginning of my NPlate treatment, I would get tested every week, receiving an injection only if my platelets fell below about 170k. My counts would spike after each injection, only to fall precipitously thereafter. It seemed to follow a four-week cycle, with my platelets peaking about two weeks after each injection at levels well above the normal range (usually about 600k; one time nearly 900k).

After a few months of this roller-coaster, we tried tapering down to very small weekly doses, which I would receive whether or not I was below the normal range. While my counts never properly stabilized, the peaks and troughs were less dramatic. I stayed within a range of 176-459 for several weeks toward the end of the taper.

I ended the taper in November with a count of around 300k. I have been tested monthly since, never falling below 175k.

As you can see, I did not become dependent on NPlate. Even if I had, though, I would have been grateful. I'd rather be dependent on something that works than have no platelets. Granted, weekly doctor visits were an expensive hassle, and they may have ultimately driven me to try a splenectomy. Thankfully, it did not come to that for me. Your mileage may differ. Best of luck to you.

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Questions for Those Experienced with ITP 4 years 2 weeks ago #48906

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Sandrew thank you for your input. We are about the same age. Your story is interesting since its similar to mine, the only thing I haven't yet tried is NPlate.

Did you have discussions with your doctor about Rituximab? Did you consider it and opt against it?

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Questions for Those Experienced with ITP 4 years 2 weeks ago #48907

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I agree with "Janet".

If N-plate is every allowed to be given at home, anyone on Medicare probably would not be able to afford it. It would then be a specialty drug (I think like Promacta). Plus, others with an insurance plan that is not at the very top, would probably have to pay a lot for it (just like Jack has mentioned many times). That's why I would prefer N-plate over Promacta as it is given in the doctor's office. So, even though many of us are willing to try these treatments, some of us could not afford them.

ITP can be very difficult for many of us.

Good luck to you Deln on your treatment! The pulses didn't work for me right away--so I sure hope they work for you! It took my body a little while to adjust, and then they kicked in.

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Questions for Those Experienced with ITP 4 years 2 weeks ago #48909

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Sandrew,

Our NPlate stories are very similar other than our ages as I was diagnosed with ITP at age 54 in early February 2014 with a count of 9K. Initially I had a positive response to prednisone and my count jumped to 160K after 3 weeks but then it plummeted back down to 5K and below. Over the next 4 months I did all the available treatments of IVIG, Dapsone, Rituximab, Cyclosporine, Tranexamic Acid, Dexamethasone and I didn't get above 5K. On the day my 4th dose of Rituximab I even scored a count of 0 and by then was covered in bruises, petechiae, had nose bleeds and many blood blisters in my mouth. It was then that I was started on NPlate and although it took 5 weeks and an 8mcg/kg dose to have an effect, once it did I went on the same incredible roller coaster ride.
I had roughly the same cycle of 150-400-600-400-250-150 as you did with weekly doses only given at the 150K count which would then take me back up to 400K. I have previously stated on this forum that the full impact of a dose would be felt 2 weeks after it was given and that is why I would go from 400K to 600K without a dose. I would then drop down again in steps to 150K and receive another small 2mcg/kg dose back up to 400K. I once had a 6mcg dose and it shot me to 1,036K only to get the 'no-dose bonus' the next week when I went to 1,084K.
But like you I followed this cycle for 5 months until in early November 2014 my ITP suddenly stopped and my count stabilised at ~200K where it has been ever since without any treatments at all. I actually had my 3 monthly blood test today and my count was 224K so all is still going well. The only side effect I had from NPlate was the mild headache - did you experience this? It was far easier to live with than the brain fog, shaky hands and sleeplessness of the other treatments and like you I thankfully still have my spleen.

All the best - Robert

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Questions for Those Experienced with ITP 4 years 2 weeks ago #48910

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Dee Dee,

When you said the 'pulses didn't work right away'. What does that mean? (I'm sorry, I don't know if you've posted this information already somewhere else, you could link me to it?)

Just wondering what you mean by not working right away, and when you started having a sustained response? For instance, 10 days out of the 1st dose of Decadron, I had 63,000 , which was my highest in months. Then, obviously, a week later I crashed back down to 2,000.

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Questions for Those Experienced with ITP 4 years 2 weeks ago #48913

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Deln,

I had mentioned before that for the first two weeks (was in the hospital), nothing would budge my platelets: Not the IVIG, prednisone, or Decadron. Then my new doctor (Dr. Park) gave me the
IVIG over a 24 hour period and that worked to get me out of the hospital (my platelets went up to 12). I went home starting on the pulses and a week later my platelets went back to 1. I was then given one more IVIG over a 24-hour period and continued on the Decadron pulses. So, it was 4 weeks later that my platelets finally started going up (they were at 12 one morning and then that afternoon they went up to 33 and just kept going up. So, the pulses didn't work at the beginning--but after a few weeks kicked in.

By the way, on the morning they were at 12, that afternoon, I was going to USC to be in a study on a new medication similar to Rituxan; but, when they went up to 33 and I was disqualified for the study. The lady told me not to take any more Dex pulses, but I did anyway and dropped out of the study. They have stayed normal since then. My husband wanted me to tell you that I rested a lot during this period and this also seemed to help.
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Questions for Those Experienced with ITP 4 years 2 weeks ago #48919

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Geez, so i've got a slight nose bleed now. Does anyone have suggestions on how to stop this?

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Questions for Those Experienced with ITP 4 years 2 weeks ago #48931

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Someone might have suggestions using tranexamic acid? I've heard of others using it to stop bleeding, but not sure if it can be used for nose bleeds.

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Questions for Those Experienced with ITP 4 years 2 weeks ago #48932

  • midwest6708
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My hematologist told me a nasal spray such as Afrin might help by constricting the blood vessels. Follow label directions so as not to overdose.
I tried it the last time my nose wouldn't stop oozing. It worked for a short time. Didn't seem worth the effort.
I just keep a tissue handy at all times to blot when needed.

Let the clot form, even if it gets so large it blocks the nasal passage. Blowing your nose will dislodge the clot and allow more bleeding.

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Questions for Those Experienced with ITP 4 years 2 weeks ago #48933

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Good morning everyone:

I think it was some dry-air or whatever that made the nasal passages bleed. I just used a tissue and stuck it up the nostrils, and then I didn't blow my nose. I'm waiting for the Decadron to kick in, which I think it probably has started.

I had a question for you all. A lot of studies I've read regarding these Decadron pulses, have also given the patients prednisone between (15 mg per day - 30 mg per day). I'm wondering if I should do the same. I'm torn though, because it's clear that from the past couple of months, that lower doses of prednisone (basically anything other than 75 - 100 mg) hasn't really done much for me. But, on the other hand, the Decadron as it wears off just 'crashes my numbers' as well.

"The younger mean age of our patients and continuation of glucocorticoid after cessation of dexamethasone, may explain more favorable response especially higher durable response in our study.

The favorable and better outcome of current study comparing Mazzucconi and Cheng studies were: young age of our patients and continuation of corticosteroid administration after cessation of high dose dexamehasone. Continuation of prednisolone may be effective in sustained blockade of clearance system and inhibition of antibody synthesis and deposition."

I put a question out to my Dr. about this, so I'll let you know his own response, but i'm curious if anyone has additional information about this. Either way, I'm assuming since I've been on Prednisone for a couple months, that I can't just STOP cold turkey, right? I need at least to continue some sort of taper. (I'm at 10 mg now, right before I did Decadron pulses yesterday).

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Questions for Those Experienced with ITP 4 years 2 weeks ago #48941

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Deln,
I was getting bloody noses and also just kind of a drippy bloody nose. I started to put vaseline (gently) just inside my nostrils and that helped to keep things from drying out. I also think, however, that the bloody nose was caused by the drastic ups and downs of my platelet numbers. I never had bloody noses before ITP and I have lived in Arizona for more than 15 years. I am sure it is not any drier here now than ever in the past. Good luck.
Diagnosed Jan 2015 at age 50 with 13,000.
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Questions for Those Experienced with ITP 4 years 2 weeks ago #48955

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6/4/2015:

I appreciate all your responses.

I'm just in a weird state right now. I'm really concerned that nothing is going to work for me. I know I haven't tried Rituxin, or NPlate, or CellCept or Orencia which are still options on the table.

I'm also concerned about getting a Spleenectomy. I have an underlying CVID condition, which means I have some issues with my immune system to start, so I don't think that taking a Spleen out would be the best case in my scenario, especially because Spleenectomy doesn't guarantee riddance of ITP.

I'm just very concerned/scared/worried right now. I've been dealing with this ITP epidsode for about 3 months now. I'm still back where I started, so to speak because my counts are down. Now, I'm on the Decadron, and it will probably boost me back up... but I have a feeling I'm just going to be back down under 5,000 again in about 12 - 14 days time.... feeling the exact same way or despair and worry, and wondering, when is this going to end. (AND, if more intervention is required, then AT WHAT COST is this going to end?).

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Questions for Those Experienced with ITP 4 years 2 weeks ago #48956

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Deln,
I said those exact same words. In reality, all you have tried, however, has been steroids. I tried IVIG and Rituxan and neither was useful. As I posted before, on average it can take a year to end up with something that puts you in "remission." The TPOs, (NPlate and Promacata) have an 80% success rate. You have seemed very resistant to try anything other than the Dex pulses with the hope that you would go into remission and not need to be on any medication. I had hoped for the same with Rituxan which only has a 60% success rate, but it had no effect on me. Maybe be open to trying NPLate or Promacta and see what happens. From what I have read, the long term effects of either are much less damaging that other alternatives. As Sandi has said to me many times...something will work, but it takes time.
You have gotten alot of information and responses to your posts. Maybe go back through your thread and read the input and see if any of it makes more sense now then it did 3 months ago.
good luck
Diagnosed Jan 2015 at age 50 with 13,000.

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Questions for Those Experienced with ITP 4 years 2 weeks ago #48958

  • Sandi
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Deln:

It's much too soon to worry that nothing will work. You did respond to Decadron, just didn't maintain counts which was not a surprise to me. Steroids just do not work for some people to cause remission, although it's too soon to say that for you if you want to continue this route with pulses. Nearly everyone goes down the treatment line and it takes time. It's frustrating for sure, but remember that you do have choices about treatments...some are known to be more successful than others. Some can stabilize counts and not be the cause of constant ups and downs.

I would think that splenectomy would be contraindicated if you have CVID, especially if you choose to use immunosuppressants such as steroids or Rituxan. Most people can avoid splenectomy with the newer treatments these days. I wouldn't even consider it to be an option. Splenectomy is a choice, not a must.

Most of us have been where you are now. We've all managed to get to a place where ITP became less of a worry and stress. You will too. I understand the cost issue. Getting to remission cost me a lot as far as permanent side effects. Make your choices wisely and do not feel that you have to try them all before going the TPO route. If you fear ending up back in the same boat with Decadron for the next few months, are you sure that you really want to go through that?

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Questions for Those Experienced with ITP 4 years 2 weeks ago #48962

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If I were being diagnosed with ITP now, I'd go to the TPOs as soon as possible. The remission rate seems to be getting higher and higher, and there is some anectodal evidence that the sooner you start after diagnosis the qicker you get a remission. Also with the added complication of a poor immune system I wouldn't be taxing it with immunosuppressants needlessly.
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Questions for Those Experienced with ITP 4 years 2 weeks ago #48968

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Here's my question/ thing about Nplate for instance regarding remission. Since Nplate is only increasing platelet production, the only way to go into remission and thus get off Nplate is when your own body decreases the destruction.

If my body, for instance, continues this rate of destruction of platelets, then sure NPlate may increase my platelet count with more production, but I'm stuck being in NPlate for who knows how long.

Thus, NPlate is acting at the temporary band aid to keep me at a Non Symptomatic level of platelets, but the underlying problem (destruction) is still there and is not being addressed.

I guess what I'm trying to say is that it's not really the NPlate that actually CAUSES remission, it's just a by product of getting ones body through the massive destruction problem, until the body stabilizes itself later.

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Questions for Those Experienced with ITP 4 years 2 weeks ago #48970

  • Rob16
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This article may answer your question, but the answer is "maybe":

Sustained remissions of immune thrombocytopenia associated with the use of thrombopoietin receptor agonists
pubmedcentralcanada.ca/pmcc/articles/PMC3938454/

In brief, the article says that remissions do occur, but it is unclear whether these remissions can be attributed to the use of TPOs, or are truly spontaneous.

With your CVID and history of hemolytic anemia, I cannot think of any treatment for ITP that you can take without further compromising your immune system, other than the TPOs. Even steroids compromise your immunity to some degree. WinRho is, I think, out of the question with your history of hemolytic anemia. Is there an alternative I am missing? You might look into some of the natural treatment methods, and combine them with the TPOs in the hope of improving your chances of a remission.
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Questions for Those Experienced with ITP 4 years 2 weeks ago #48971

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Hi Rob,

With CVID, the IVIG more or less neutralizes that immune system issue. So, for instance even though I'm on steroids now, which supressess my system, I have IVIG to assist in protecting my immunity, so it counter balances and also does help, minimally the itp issue.

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Questions for Those Experienced with ITP 4 years 2 weeks ago #48972

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Thanks. You taught me something!

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