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Hospitalized for 7 weeks now, any advice helps. 4 months 3 weeks ago #70525

  • Zach Tarver
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Just wondering when everybody has been allowed to be treated outpatient? I'm going on 7 weeks being admitted in the hospital. The first two weeks I was given IVIG which increased my platelets over 100k both times and they kept me for observation as my platelets would then crash 4-5 days after the infusion with dexamethasone. I was able to start rituxan until December 16th, i've had my 4 infusions. Also I am currently getting Nplate, cyclosplorine, and am tapering off prednisone. My counts fluctuate in the single digits, and currently am only showing signs of some petechiae on my feet, my gums have stopped bleeding, and i havent had a nose bleed for 3 weeks. I'm really getting to the point where I just want to be home with my kids and wife.

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Hospitalized for 7 weeks now, any advice helps. 4 months 3 weeks ago #70529

  • mhprice2000@msn.com
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Hi Zach! I was hospitalized in late November 2019. Went to the ER with a count at 3k and significant internal bleeding. I was only kept in the hospital for 4 days, treated with platelets, Prednisone, and IVIG, and was released when my platelet count went above 50k. However, my counts crashed continually over the next three months, so I was in the hospital an additional 4 times (for about 4-5 days each time) through mid-February 2020. My count hit 0k several times and stayed in single digits about 2 weeks out of every 4 over the first 7 months. During my hospital stay in mid-February, they performed a bone-marrow biopsy and confirmed my ITP diagnosis in the absence of other issues. By then, I'd also had 4 Rituxan infusions outpatient (intermingled with the hospital stays). After the bone-marrow biopsy, they started treating me with IVIG outpatient (about once every 3-4 weeks). I had a splenectomy in mid-June 2020 because I hadn't responded to any medications and I was becoming resistant to IVIG. Being hospitalized for 7 weeks continuously seems extreme, but I do know that platelet counts at your level (I read some of your other posts) are very risky. It really depends on your doctor and how susceptible you are to bleeding. I was told many times that I was "too fragile to be on my own", even though the only uncontrolled bleeding I had after the initial onset was a nosebleed. The most frustrating aspect of it was that I felt fine, other than the side effects from the treatments. The danger with extremely low levels is that one can have a spontaneous brain hemorrhage. I also saw that they were recommending you for a splenectomy. It does seem early, and mine was considered early at 7 months in, but they probably feel that, at your levels, it's the safest thing to do. Talk to your doctors--I did, and they told me that they considered the splenectomy to be a last resort to save my life. Be aware that even the splenectomy may not send your ITP into complete remission. Mine didn't, but it did make me responsive to medication, so now I'm in the 100k-200k range on Promacta. Best of luck to you, and I hope you get out of jail soon! :-)
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Hospitalized for 7 weeks now, any advice helps. 4 months 3 weeks ago #70530

  • Zach Tarver
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Thank you so much for the reply it really does make a huge difference, and i'm not completely sure how at risk I am for bleeding, I mean I have very low platelet counts, but I do not have much bruising or petechiae, The worst is the bleeding gums and an occasional nose bleed with one being uncontrollable as well. I am wondering if I shouldn't get ready for the splenectomy, as nothing seems to want to bump up my numbers besides Dexamethasone.

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Hospitalized for 7 weeks now, any advice helps. 4 months 3 weeks ago #70532

  • JJ
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I've never been hospitalised. Even with counts at zero I just went home and was treated as an outpatient. I'm retired now but when I was working I never missed work either. If you have a confident up to date haematologist you can be treated as an outpatient.
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Hospitalized for 7 weeks now, any advice helps. 4 months 3 weeks ago #70534

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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I totally agree with JJ.
This seems to be a classic case of treating the count not the symptoms. Not an holistic approach at all. Far too early to be considering a splenectomy. It can take up to 4 months for the Rituximab to work.
I was admitted in the evening with a count of 12 (covered in bruises from head to foot). Sent home after breakfast the next morning count still 12 but had not dropped after Prednisolone.
That was 6.5 years ago. Never been hospitalised since.
Continued to work on the NHS front line until I retired last year. Lowest count ever was 2 and I still worked.
When I flew to Australia 3yeas ago for a holiday I asked my haemo what was a safe count to go with. She replied with anything above zero.
Personally I would tell them
1) I am sick of being in hospital and feel the stress of such a long hospitalisation is affecting my counts.
2) Stop Nplate and Cyclosporine
3) Put me on Promacta
4) Send me home.
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Hospitalized for 7 weeks now, any advice helps. 4 months 3 weeks ago #70535

  • Zach Tarver
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Thank you everyone! another day here, I feel really good today, petechiae seems to have faded, don't know what my counts are as I have chose to only be poked every other day now to give my veins some rest. I am going to talk with my doctor more about being outpatient, and also why do you suggest getting off the cyclosporine and Nplate? I will talk to my doctor about promacta as well.

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Hospitalized for 7 weeks now, any advice helps. 4 months 3 weeks ago #70536

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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Zach
Good for you declining daily bloods.
Before you undertake any treatment you should be informed of possible side effects so you can make an informed decision as to whether you try it or not.
All drugs carry risks but some are worse than others. Long term possible side effects of cyclosporine are horrendous, plus it nukes your immune system which in the middle of a worldwide pandemic is not really desirable. Particularly on top of Rituximab which may well yet kick in.
Nplate is a personal hate. It made my counts very unstable swinging from single figures to over 200. Plus you will have to go somewhere to get it administered.
Promacta is daily give more stability.
When you talk your doctor ask for the evidence base being used to treat you. It will give you an idea of how current his/her knowledge is.
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Hospitalized for 7 weeks now, any advice helps. 4 months 3 weeks ago #70538

  • Meredith
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Hi Zack
May I ask in what country you are living? If the US, which part?
I am seriously concerned about hospitalization for seven weeks, especially with Covid.
I consult with the well known ITP team at Mass General (MA) and have an excellent hematologist in RI and I am certain hospitalization would not be an option. I have been below 5 many times.
Have you had a second opinion?
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Hospitalized for 7 weeks now, any advice helps. 4 months 3 weeks ago #70539

  • Zach Tarver
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Hey Meredith I am currently in Montana, going on 3 weeks of single digit counts under 5. I haven't had a second opinion other than the occasional hematologist that stops by who is on call for the weekends, not sure when to draw the line or where to even go about looking for a second opinion. My doctor mentioned possibly trying outpatient next week given nothing new comes up over the weekend. Thank you for the reply.

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Hospitalized for 7 weeks now, any advice helps. 4 months 3 weeks ago #70540

  • Meredith
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Has WinRho been tried?
Did you have a bone marrow biopsy to rule out other diseases?
Are you ANA positive?
Do you have the means to get out and consult with an expert?

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Hospitalized for 7 weeks now, any advice helps. 4 months 3 weeks ago #70541

  • Zach Tarver
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Have not tried WinRho yet, had a bone marrow biopsy and everything was normal there. The ANA test was a little unclear I will talk to my doctor about that today and get back with you, from what I know it came back slightly positive. I am open to suggestions.

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Hospitalized for 7 weeks now, any advice helps. 4 months 3 weeks ago #70542

  • Meredith
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Well, I am not really the one to give advice. I am the poster person for everything that failed for ITP. However, I was only hospitalized for one day when I was first diagnosed. Since I live in a city, the Lifespan Cancer Treatment Center ( which also has all the oncologists) is five minutes away. I was also treated in Sarasota, FL when I was there in the winter. I do consult with Dr. David Kuter and his Team at Mass General . He has quite a few credits on Google and I believe he is on the PDSA board. He was one of the main speakers at the conference. The bottom line, they have kept me going and out of the hospital. And I lead a regular life except for the Covid issue. Right now I take Cellcept—-MMF and NPlate.

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Hospitalized for 7 weeks now, any advice helps. 4 months 3 weeks ago #70543

  • Zach Tarver
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Just hearing that I'm not the only one helps honestly. I dont have any symptoms this week, Is cellcept similar to cyclospine? and what is MMF? do you still have your spleen? the doctor hasn't been too pushy for splenectomy as he wants me to find a medication that works, but as of now I'm refractory. The hospital i'm at is not where I live, it's about 2 hours away from the town I live at in Wyoming. My local hospital doesn't have platelets on hand, so I was sent up here.

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Hospitalized for 7 weeks now, any advice helps. 4 months 3 weeks ago #70544

  • midwest6708
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I'm another one who's had multiple bouts of single-digits and never been hospitalized. But I have seen many instances on this board of hospitalizations resulting from panicky doctors who think the sky is falling when counts do. It does NOT have to be that way, Zach. Educate yourself and don't be led by the nose. Question everything, and if you don't like the answers, get other opinions.

The first place to get the best information is at PDSA, not just on the discussion boards but on the Patients and Caregivers tab on the home page. Read the entire section on treatments, if you haven't yet.
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Hospitalized for 7 weeks now, any advice helps. 4 months 3 weeks ago #70545

  • b2h
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Uggh 7 weeks! You need a better hematologist for sure. I agree about counts vs symptoms. Both need to be considered, but symptoms should be given more weight. In the beginning there is always caution (or should be) until you and the doctors know how your ITP shows. Meaning, are you someone who bleeds a lot and therefore in danger of severe internal bleeding. From what you have written, it seems you are not.

IVIg for many doesn’t last very long. Perhaps a week or two, so you are on the low side, but I don’t think it’s an unusual response. It’s usually an emergency treatment. Basically, get the numbers to safe double digits while figuring out what to do next. However, there are some who use it as maintenance treatment because it keeps their numbers up for a much longer time than it does you.

MMF is Mycophenolate Mofetil. The brand name is Cellcept. Cellcept and Cyclosporine are both immuno suppression drugs that are marketed for those who have had organ transplants. They help keep the body from rejecting the transplanted organ. They are similar, but that doesn’t mean you won’t have different reaction to one over the other.

Did the prednisone help? Why did they decide to taper?

If Nplate doesn’t work for you, have no fear, there are still a number of other medications you can try before having your spleen removed. Having your spleen removed now does not make sense because you don’t know if this is going to be chronic or not. However, I do understand where you are coming from and simply wanting to get home and get on with life.

Rituxan takes a bit to work.

Your local hospital would be okay for you since you don’t need platelet infusions. They won’t do much to help since your body will just kill them off.

You can try promacta, tavalisse and other medications. There is hope.

I’d say, get them to let you go home and find a good hematologist. A good hemo will listen to you and will be grounded and not freak out.

Best ~
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Hospitalized for 7 weeks now, any advice helps. 4 months 3 weeks ago #70546

  • Zach Tarver
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The Prednisone I didn't respond to, but the Dexamethasone I did. Other than that I haven't responded to anything so far, it's all hard for me to wrap my head around. I cant seem to break the single digits. When I first was admitted my counts were higher and I had more signs of bleeding. My Hematologist says I don't seem to be too at risk for severe bleeding, but it's still something that crosses my mind frequently. Thank you all for the responses, I have been on Nplate for about 5 weeks, is that too soon to say it won't work? and maybe try promacta?

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Hospitalized for 7 weeks now, any advice helps. 4 months 3 weeks ago #70547

  • MelA
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Wish you had come down to Colorado instead!

Can't someone donate platelets to/for you if you needed them so that you could be at home? Platelet transfusions are eaten up as quickly as body-made platelets as I understand it.

People are giving you good opinions - I don't know if I could stand a hospital for that long while not feeling bad. I really don't have anything to add as I've only had prednisone and WinRho as treatments, thank heaven I didn't have to go [knocking on wood] the chemo route.

Ok - you had said you mean 5k when you say 5. We had a group of ITPers who would get together every couple of months, one had a count around 5k and it stayed there [did go up after a splenectomy but back down again] and she was doing well - another had a count around 5k all the time and he was doing fine. I guess it all depends on whether there are symptoms or not.

As midwest/Janet said: "Educate yourself and don't be led by the nose. Question everything, and if you don't like the answers, get other opinions."

It just breaks my heart you are in a hospital in a town hours from your home in the midst of a covid pandemic -
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Hospitalized for 7 weeks now, any advice helps. 4 months 3 weeks ago #70548

  • b2h
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I'm not a doctor, but if the dexamethasone works, why are they not using that so you can be out of the hospital while a long term plan is figured out?

I think Nplate works pretty quickly. For me, it takes about three days. On the Amgen website it states “Within 1-3 weeks, the majority of patients on Nplate® reached at least 50,000 platelets per microliter”. www.nplate.com/faqs

Yes, maybe it's time to try Promacta.

I'm glad your hemo isn't worried about severe bleeding. However, I do understand why you think about it. I think we all have, or at least most of us. I did for a while. New diagnosis are always frightening. ITP is rare and deals with bleeding, which makes it more so. I completely understand.

For many years I was hospitalized numerous times for ITP and I have tried many medications. It’s only been the past couple of years that I have had no hospitalizations. I think I was diagnosed in 2007. It can take a while to find what works for you and to find the right hematologist, so don’t get too discouraged. :)

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Hospitalized for 7 weeks now, any advice helps. 4 months 3 weeks ago #70552

  • midwest6708
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Zach Tarver wrote: I have been on Nplate for about 5 weeks, is that too soon to say it won't work? and maybe try promacta?


Thinking about that NPlate and your question, Zach... I have to wonder what dose you're taking. It should have been started low and gradually titrated upward until a response happens, and then tweaked some more to find the lowest dose that will maintain a sustained platelet count of 50 (not a "normal" count). Are you already at the maximum dose? That would be 10 micrograms per kg of body weight. Once the highest possible dose has been reached, it should be given for at least 4 weeks to watch for a desired response. From what you've said, it doesn't seem likely this protocol was followed, because there just wouldn't have been time for it yet.
If you don't know the answers to all this, you should start asking ASAP.

So, bottom line, of course there'd be time for NPlate to work if it hasn't been given correctly yet. And if that's so, no one can know if Promacta would work better if NPlate hasn't been given a fair and proper trial.

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Hospitalized for 7 weeks now, any advice helps. 4 months 3 weeks ago #70553

  • trobach
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Hi,
I see many of you refer to Promacta? Can you tell me more about this treatment?
I had a splenectomy in 2000 and had a good response but the last few years my platelets have started to decline. I am currently treated by my internist as my hematologist retired but may need to find a new one. Are there many side effects from the Promacta?

Thank you!

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Hospitalized for 7 weeks now, any advice helps. 4 months 3 weeks ago #70554

  • Zach Tarver
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I am getting the 10 micrograms per kg right now for Nplate, Hematologist doubled my doses after the first few weeks. I should be let outpatient possibly monday it sounds like, so we will continue to give the current treatments some time, and i'll be visiting 3 times a week outpatient I believe.

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Hospitalized for 7 weeks now, any advice helps. 4 months 3 weeks ago #70555

  • b2h
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Good point midwest6708. I've been on it so long I forgot about the dose adjusting.

That's great news Zach! I hope your counts are up soon.

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Hospitalized for 7 weeks now, any advice helps. 4 months 3 weeks ago #70556

  • midwest6708
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trobach wrote: Hi,
I see many of you refer to Promacta? Can you tell me more about this treatment?

Promacta is one of several drug agents that stimulate the bone marrow to increase platelet production. These drugs were approved several years after your splenectomy. You can read about them on this PDSA page ~
pdsa.org/platelet-growth-factors.html

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Hospitalized for 7 weeks now, any advice helps. 4 months 3 weeks ago #70557

  • midwest6708
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Zach, I'll keep fingers crossed for you that you’ll be sleeping in your own bed Monday night. I can't imagine being stuck in a hospital as long as you've been without actually feeling sick.

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Hospitalized for 7 weeks now, any advice helps. 4 months 3 weeks ago #70558

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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Zach 3 times a week is outrageous
NPlate protocol ( www.nplatehcp.com/dosing/ ) states
Obtain CBCs, including platelet counts, weekly during the dose adjustment phase of Nplate therapy and then monthly following establishment of a stable Nplate dose.
Obtain CBCs, including platelet counts, weekly for at least 2 weeks following discontinuation of Nplate

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Hospitalized for 7 weeks now, any advice helps. 4 months 3 weeks ago #70559

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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Hospitalized for 7 weeks now, any advice helps. 4 months 3 weeks ago #70562

  • Zach Tarver
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Being discharged today, counts are still in single digits as of yesterday, but no signs of bleeding. Going to wait it out and see if some of the treatments will start to kick in. I think we will go down to labs 2 times a week, and just keep an eye out for symptoms in the mean time.

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Hospitalized for 7 weeks now, any advice helps. 4 months 2 weeks ago #70563

  • MelA
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This is a red letter day for you and family!! Welcome home!!
So glad no symptoms. Keep us posted!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Hospitalized for 7 weeks now, any advice helps. 4 months 2 weeks ago #70565

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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Your escape pass, congratulations Zach
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Hospitalized for 7 weeks now, any advice helps. 4 months 2 weeks ago #70567

  • Zach Tarver
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Thank you everyone, I will keep you posted. Feels good to be out.

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