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Hospitalized and Treatment Moving Fast 10 years 1 month ago #20292

  • mjocusa
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My father was just diagnosed with ITP last week after Thanksgiving. He has been in the hospital for the past two weeks and the whole thing has been a blur as we have been struggling to become educated and come up to speed on his condition while he has been in the hospital.

On Sat 11/26 he had a persistent nosebleed that would not stop. We went to the ER and he had a count less than 10. Coincidentally, he had a blood test for a non related issue on 11/2 and his platelets were 219 before the onset of ITP. He has no other major heath problems besides hypertension.

He was treated with IVIG, Decadron (Dexamethasone) and a platelet transfusion and his levels rose to 13 following the initial test. The hospital was not in our medical network, and he was discharged that night with an active nose bleed. We drove down to the SF Bay Area and he was readmitted the next day. When he was tested his levels were 10 on Sunday 11/27 and he was admitted to the hospital again.

He was treated with more platelets, IVIG and Decadron for the next 3-4 days. Levels rose slightly into the 20’s for the most part. He was switched to Prednisone and taken off IVIG, numbers started to fall. He has been given platelet transfusions pretty much daily since admission, with the exception of maybe a day or two when his numbers rose.

His hematologists have declared him steroid refractory after 10 days treatment with Decadron (3-4 days) and Prednisone (6-7 days) and have scheduled him for Rituxan (on what will have been his 13th day in the hospital). We fought hard to have all 3 hematologists at the hospital review his case, all three have concurred with the treatment regimen and next steps. We were interested in second opinions but can’t get one while his hospitalized. Rituxan is the next step, we hope it works to raise his levels.

We wonder if in anyone’s experience Rituxan is given this quickly?

We are very glad to have found this Forum and have been reading mainly from UptoDate on ITP and its treatments. Thanks for reading.

Michael (John’s son)

Platelet Levels
Saturday 11/26
o Below 10 at admission to first ER
o 13 at Discharge following transfusion
Sunday 11/27
o At or below 10 at re-admission from second ER
Monday 11/28
o 21
Tuesday 11/29 (Platelets)
o 12
Wednesday 11/30
o 26 following transfusion
Thursday
o 28 Switch to Prednisone from Decadron
Friday
o 24
Saturday
o 11 (2 Units Platelets)
Sunday
o 12 (2 Units Platelets)
o 70 after Platelets
Monday 12/5
o 9 (morning after two units platelets)
Tuesday 12/6
o 4 (2 units platelets)
o 27 after transfusion
Wednesday 12/7
o 4 (2 units platelets)

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Re: Hospitalized and Treatment Moving Fast 10 years 1 month ago #20294

  • Sandi
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Hi Michael. Sorry to hear about your Dad.

Rituxan can be given early in the diagnosis if the usual treatments are failing. However, Rituxan can take 4 to 12 weeks after the first infusion to work. It's not known to be a treatment that can cause a fast response.

How are your dad's symptoms? I'm asking because platelet transfusions can sometimes cause more harm than good and are usually only given for active bleeding.

How old is your Dad? Age can also play a factor. Have they done a bone marrow biopsy?

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Re: Hospitalized and Treatment Moving Fast 10 years 1 month ago #20295

  • mjocusa
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Thanks Sandi. My dad is 63, he has had a bone marrow biopsy, nothing abnormal.

At admission he had a bloody nose, blood running down his throat, petichei, some blood blisters in his mouth. Those subsided quickly after initial treatment. Today, for the first time in several days, he had more bleeding, a less bloody nose and some blood in his mouth.

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Re: Hospitalized and Treatment Moving Fast 10 years 1 month ago #20296

  • bandit
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My partner was diagnosed in this fall and twice had counts down to 2. He started Rituxan after about 3 weeks of getting no response from steroids, IVIG and a few platelet transfusions. He had 2 episodes of intestinal bleeding.

Last count, 2 weeks after the 4th Rituxan treatment, was 121 (this was last week). So it seems to be working initially, although we expect a roller coaster going forward.

Best of luck w/ your father and his Rituxan. You might also look into Promacta
The following user(s) said Thank You: mjocusa

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Re: Hospitalized and Treatment Moving Fast 10 years 1 month ago #20299

  • Dean
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Sorry to hear about your Father!! I have been on Prednisone a few times, counts raised at first but dropped when tapering off. After awhile Prednisone was not doing anything, so Rituxin was the next option. First round of treatment lasted 16 months. Second round is going on over 2 years. Hope the Rituxan works for your Father!!! If you get a second opinion, do not be suprised if a Spleenectomy is suggested. Do some research on Spleenectomys just incase.

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Re: Hospitalized and Treatment Moving Fast 10 years 1 month ago #20309

  • april
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Did your father receive a flu shot or other vaccine, shortly before hi diagnosis? Or, was he taking any kind of medications?

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Re: Hospitalized and Treatment Moving Fast 10 years 1 month ago #20366

  • mjocusa
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April, he did get a flu shot at the beginning of November. He had just been taking a relatively low does of blood pressure medicine (Lisinopril HCTZ).

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Re: Hospitalized and Treatment Moving Fast 10 years 1 month ago #20367

  • mjocusa
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Platelet Transfusions-
One other question we continue to have is with the continued administration of platelet transfusions my father has received during his hospitalization (now at day 15).

I am curious to see if any others experienced a similar treatment, and their thoughts.

The treating hematologist has wanted to see an upward trend in his platelet numbers before discharging him. Platelets have been transfused at least 12-13 times, most days it is 2 units, on a one day when his count was less than 5 and bleeding from his nose had restarted 4 units were administered (2 in AM and 2 in PM).

At admission to the ER and hospital he had fairly significant bleeding from the nose (running to the throat and mouth), blood blisters in his mouth, and petechiae. These ceased once IVIG treatment and Decadron had started, but reappeared with a less severe nose bleed within the past week, which subsided.

I have read Sandi's comments on many posts concerning transfusions, and some review of literature from Dr. James N. George from the University of Oklahoma that seems to discourage platelet transfusion except for emergency or severe bleeding situations. The treating hematologist has said he is not concerned with him becoming platelet refractory at this point.

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Re: Hospitalized and Treatment Moving Fast 10 years 1 month ago #20368

  • milly
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mjocusa,

I have received one platelet transfusion and the treating Doctor explained to me that it was an emergency situation that involved uncontrollable bleeding and the platelets were being transfused to stop the bleeding but apart from that they would not transfuse platelets as they would be destroyed.
There is no practice run in life.

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Re: Hospitalized and Treatment Moving Fast 10 years 1 month ago #20376

  • Sandi
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Michael:

I wouldn't want to second guess his treatment, but there are other problems that transfusions can cause. Besides becoming refractory, a person can also experience Post Transfusion Purpura which can defeat the purpose. A person can also slowly become 'allergic' to the transfusions, resulting in a severe reaction after a period of time.

Usually, transfusions are used for emergency situations, but older patients are more prone to bleeding, so I'm not sure if it's warranted in this case or not.

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Re: Hospitalized and Treatment Moving Fast 10 years 3 weeks ago #20852

  • mjocusa
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I wanted to post an update on my dad. He is still in the hospital (day 34). He and the rest of the family are staying pretty positive all things considered, but it has been a bit of a struggle. His hematologists have been just ok, unwilling to discuss issues in great depth (a daily 5 minute bedside visit), and not much help with pulling together reports for an outside second opinion, which is proving to be it's own challenge while he is hospitalized. The attending hospitalists on the other hand have been very good at explaining options and doing research, so it has been a mixed bag. My dad by this time knows the whole floor, and has had many amazing nurses.

Rituxan: He just had his 4th treatment of Rituxan today. The hematologist today didn't think the Rituxan was working and thought it would be a failure (after 3 weeks). Our reading of the literature in the Blood Journal, which I am reading a lot of these days, said Rituxan could take up to 6-8 weeks to work, but don't tell that to his hematologists who seem anxious to schedule a splenectomy. Has anyone had experience with later responses to Rituxan?

Platelet Levels: So far he has been unresponsive to all treatments (IVIG+Decadron->Prednione->Rituxan+Decadron), with no day to day count higher than 30. His counts the last 5 days have been under 2, the lowest levels they have been during his hospitalization. He has petechiae and nose bleeds that have come back for the first time since onset as his counts have gotten low. He's had platelet transfusions almost daily, 50+ units so far.

Splenectomy: His hematologists are pushing for splenectomy. He is dead set against this at this point- he's 63, overweight and has high blood pressure, all complicating factors for surgery; that and he has many of the normal reservations we've read in the forums. We are in process of trying to schedule Dr. Liebman at USC (who has been doing TPO agent research) for a second opinion and exploring options at Stanford and second opinions by proxy. Our feeling is we want an ITP specialist for a second opinion, as my guess would be that your run of the mill hemo is going to say, "well the next step is splenectomy." His hematologist dismissed Nplate and Promacta because of a risk of fibrosis, but we are hoping to consider these to buy more time and get him out of the hospital. Any specific doctor recommendations in the SF Bay Area would be appreciated.

Vaccinations: He has just started the prophylactic vaccinations for splenectomy. We have been confused by this, as some of our reading in the Blood Journal and UptoDate seems to indicate that these shouldn't be given these after Rituxan. Anyone have any experience with vaccination after immunosupression, or splenectomy immediately following Rituxan treatment?

Again reading the forums is such as great help as it gives a varied continuum of experiences with the always variable ITP. Thanks everyone!

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Re: Hospitalized and Treatment Moving Fast 10 years 3 weeks ago #20854

  • cgoewert
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I would and will fight not to get a splenectomy. Since the has been in the hospital for a month, I assume they have performed some imaging of his spleen. What has imaging shown as the condition of his spleen. Is his spleen normal sized, or does it show any enlargement or other problems?

As far as Rituxin, it can fail and actually make the counts even lower. It failed far me me after four treatments. It may be time to stop that treatment.

Prednisone did the same thing.

There is no one drug or treatment that works for everybody.

Have the Hemos considered N-plate?

Have the hemos read the stories and experiences of the people on this Discussion group. There is a lot they might learn.

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Re: Hospitalized and Treatment Moving Fast 10 years 3 weeks ago #20855

  • mjocusa
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Cgoewert, CT scans showed a normal spleen, there have been no indications of spleen problems. Nplate and Promacta were dismissed because of risk of fibrosis.

My reading in the Blood Journal has indicated these complications occured in less than 10% of patients, were reversible when the treatment stopped, and than ITP patients may display fibrosis in the bone marrow independant of TPO agent treatment (Nplate, Promacta).

All of which are a cause of frustration and thus the desire for an outside second opinion. We've scheduled a "patient care conference" for next week where we'll take up these issues in more detail...

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Re: Hospitalized and Treatment Moving Fast 10 years 3 weeks ago #20856

  • Dean
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Sorry to hear he has had to spend so much time in the Hosp. I have had two rounds of Rituxan. Both times it took several weeks after the 4th treatment before counts started to climb. They took their sweet time climbing. I agree with fighting the Splenectomy. The major concern with a Splenectomy is the long term risk of infection. The splene helps fight infection. After Splene removal you are more likely to contract serious or life threatning illness. At age 63 he does not need that to worry about also.
Give the Rituxan time.
Hope you get better answers.

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Re: Hospitalized and Treatment Moving Fast 10 years 3 weeks ago #20862

  • Dave
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I have read that IVIg can prevent vaccinations from being effective. I think the time required to wait after IVIg until a vaccination will be fully effective is up to 3 months, but that is something the doctors should know.

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Re: Hospitalized and Treatment Moving Fast 10 years 3 weeks ago #20863

  • Ann
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Vaccinations also don't work so well immediately after Rituxan.

Poor chap will be immunosuppressed from Rituxan even if it doesn't halt the ITP and they still want to do a splenectomy making him doubly immune compromised. Needs thinking about a lot. I'd crack on getting that second opinion if I were you.

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Re: Hospitalized and Treatment Moving Fast 10 years 3 weeks ago #20864

  • patti
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And I'd seriously consider signing him out against medical advice (AMA) or these idiots are going to kill him. :sick:

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Re: Hospitalized and Treatment Moving Fast 10 years 3 weeks ago #20867

  • Sandi
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I'm sorry to hear he is still in there. Must be very frustrating for all of you.

You sure have a lot of hard decisions to make. Rituxan can take more time to work. You've read that correctly in the literature. It cracks me up when doctors think it should work in 3 weeks. That is actually more rare than a delayed response. It could still work, but be prepared for the fact that it may not. You still have a few weeks of hope left.

If the platelet transfusions are not doing anything, why are they still giving them? Have they tried stopping them for a while to see what happens? Post-transfusion purpura is a possibility.

I would think the next step would be the TPO's, but since he is bed bound, they'd have to watch for clotting. That would also be a huge concern with splenectomy....and a life long one. I wouldn't be concerned with fibrosis in this situation. It has been shown to be reversible and is not an immediate occurrance. Why not try something that could and most likely will get him out of the immediate crisis?

Good luck with your next opinion. Seems warranted.

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Re: Hospitalized and Treatment Moving Fast 10 years 3 weeks ago #20878

  • poseymint
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Hi Michael, Sorry your family has to go through this, it sounds really tough.

I live in the north SF Bay, Sonoma Co. and have worked with two hemotologists for over 2 years that I think are great. They are well-informed, easy to talk to and really work with me to find solutions that we are both happy with. Both have experience with NPlate and Promacta which is what I've been on, and their patients have had success with these drugs. None of their patients have had fibrosis, its not that common in my experience.

Promacta worked right away once I got the right dosage, brought my counts up the first week. I refused spenectomy after hearing that people over 50 don't have as high of success rate as a younger person, just didn't want to risk it. If you'd like these doctor's names just send me an email and I'll respond with their info. I think you can do that by clicking on my name then going to "messages". Good luck!

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Re: Hospitalized and Treatment Moving Fast 10 years 3 weeks ago #20886

  • mjocusa
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Thanks all for the thoughts.

Posey I sent you an email on the North Bay Hematologists, thanks! In regard to everyone's comments:

Sandi, the platelet transfusions have pretty much been consistent, there have been a few days here and there where they have not done them. We asked the questions about possible complications, the hematologists were not concerned. The last week his levels have been 2,2,1,2,2,7,6 with nose bleeds and petechiae, so it seems like that might be a good justification for a temporary post transfusion boost. Then again, maybe the transfusions are inducing more autoimmune response?

We are pushing for the TPOs. The one small blessing of ITP is that aside from some drug side effects (Benadryl with platelets and Rituxan), he feels pretty good and can concentrate better now that the Prednisone has been tapered off. If he does get the TPOs we'll push to get him walking around more.

We'll wait on the Rituxan and hope it gets levels +10 to get him out of the hospital.

His hemos have generally been cool to our research and forum posts. "Be careful, the forums have all the patients with the worst symptoms," etc.

One challenge is he is in a closed insurance/hospital plan (think German leader or type of bread roll) so switching docs and getting second opinions is a challenge. After this I am ready for single payer comprehensive health reform. One other small blessing is he has supplemental hospitalization insurance.

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Re: Hospitalized and Treatment Moving Fast 10 years 3 weeks ago #20888

  • Sandi
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Well, they can't dispute any research quoted from bloodjournal.org. Nor should they dispute any articles from the PDSA itself. I'd use those.

As for the Forum, your dad seems to be the in the worst situation at the moment. Everyone else is pretty stable for the moment due to one treatment or another.

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Re: Hospitalized and Treatment Moving Fast 10 years 3 weeks ago #20889

  • snadgeuk
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As has been asked already, if platelet transfusions aren't working why are they still doing them? My count can drop as low as 2, but seeing as my spleen sees platelets as the enemy there is absolutely no point on wasting donations by giving me a transfusion, as my bone marrow produces a good many, just my spleen hates them. has your dad had a bone marrow test, and if so is his producing decent amounts of platelets?

I have had ITP for 26 years, and have had counts as low as 0, only been hospitalised twice in all that time, and have had 2 c sections with lowish counts. am currently getting into nplate and am stable for the first time in years.

Try not to lose hope, and tell yer dad to hang onto his spleen if he can. Maybe also ask for a second oppinion if that is possible where you are.

Good luck and all the very best wishes to you for 2012 xx

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Re: Hospitalized and Treatment Moving Fast 10 years 3 weeks ago #20894

  • Dean
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Hope the new year brings your Dad increased Platelets!!

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Re: Hospitalized and Treatment Moving Fast 10 years 3 weeks ago #20897

  • mjocusa
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The platelets do stop bleeding in his nose, so they are helping a little, and with counts under 5 we're not second guessing that at this point.

Hopefully 2012 with bring some better news. The third member of the hospital hematology department is back in the New Year. He studied under Dr. George at Oklahoma, so there maybe some hope there for an inside second opinion.

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Re: Hospitalized and Treatment Moving Fast 10 years 3 weeks ago #20899

  • cgoewert
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Michael:
You stated that N-plate is not being considered because of Fibrosis. That may not be correct. According to Amgen's site

"Bone marrow changes (increased reticulin and possible bone marrow fibrosis): Nplate® may cause changes in your bone marrow. These changes may lead to abnormal blood cells or your body making less blood cells. The mild form of these bone marrow changes is called "increased reticulin". It is not known if this may progress to a more severe form called "fibrosis". The mild form may cause no problems while the severe form may cause life-threatening blood problems. Signs of bone marrow changes may show up as abnormalities in your blood tests. Your healthcare provider will decide if abnormal blood tests mean that you should have bone marrow tests or if you should stop taking Nplate®."

According to my Hematologist, there have been nothing to indicate that n-Plate would cause fibrosis.

But at the same time you a trying ti break the cycle of low platelet counts which is causing continued hospitalization for your father. You may want to consider all options that are available for the short term to get his counts up without a splenectomy. I would think trying to find something more effective in the short term.

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Re: Hospitalized and Treatment Moving Fast 10 years 2 weeks ago #21015

  • mjocusa
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An update to report- the third member of the hematology/oncology team, and the one with the greatest familiarity with ITP returned from vacation and saw my dad in the hospital. He studied under Dr. George at Oklahoma, who is one of the leading experts on ITP. Anyway, after reviewing my dad's progress, our research, and desire to proceed with a TPO agent before splenectomy he thought these ideas had some merit. He had a phone consult with Dr. George to review the case and Dr. George thought given my dad's treatment that it was too soon to consider the Rituxan a failure (he had his 4th infusion last week) and that a TPO treatment at the point would be a reasonable way to proceed. My dad's USC consult has been schedule for February 1st.

Nplate or Promacta? So it looks like Nplate or Promacta will be the next step. We were hoping to get a consult or referral on this from someone in his health network or an outside source prior to administration, as the current team has only 1 patient between the 3 of them on Promacta, but its not clear if we'll be able to or not. My dad's count again today was 1. It has been 1 or 2 for the past 10 days or so. Tomorrow will be his 40th day in the hospital.

Does anyone have an opinion one way or the on the two drugs?
My dad still has his spleen. Given the liver toxicity side effect and cataract side effects with Promacta we are leaning toward Nplate. It seems that Nplate may have slightly more studies from what we've read and slightly better outcomes for non-splenectomized patients (although they both went through blind studies). Now that the FDA has loosened the restrictions he'll probably be able to self administer Nplate at home. Any thoughts or opinions would be appreciated, thanks all!

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Re: Hospitalized and Treatment Moving Fast 10 years 2 weeks ago #21019

  • Ann
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It's really just a personal choice. Nplate does have a slightly higher percentage success rate, doesn't have the liver problems that Promacta can have and doesn't have the dietary restrictions that Promacta has with not being able to eat calcium products either side of 4 hours of taking it. With either drug he'd have to be seen for a blood test each week until stable but Nplate might take slightly longer to get there.

I'm on Nplate and prefer the injection once a week thing to a daily tablet but that's a personal preference.

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Re: Hospitalized and Treatment Moving Fast 10 years 2 weeks ago #21024

  • weirdjack
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Yep...as Ann said, it is usually a personal choice. Whatever fits you best.

As for myself, I chose Promacta over Nplate. It has been a good choice for me.
I hate needles.....period. Give me an option and I'll always choose not to be stuck with anything.
Over the past two years, I've found that taking Promacta in the middle of the night resulted in fewer noticeable side-effects and the '4-hour calcium concern' is moot at 1:00am. I am 58 years old....I ALWAYS get up in the middle of the night, so it did not change my routine any.
My liver numbers have never varied on Promacta, there has been no change at all.
Cataracts are simply one item on a LARGE list of possibilities: www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000490/#a609011-precautions .

After the first year on Promacta, my monitoring and hema visits were radically reduced to twice a year. It has been sooooo refreshing!
My counts now stay in the 40k-50k range on 50mg/day dosage.

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Re: Hospitalized and Treatment Moving Fast 10 years 2 weeks ago #21028

  • poseymint
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Sounds like you are doing a great job advocating for your father! Good work!

Promacta worked best for me financially because I would have had to pay for weekly hemo visits if I was on NPlate. Taking a pill was easy, the dietary restriction was not a problem. I had no side effects except for a slight dry mouth in the morning. Every 2 weeks I had a CBC and each month a CMP which tested liver function.

I've shared this before, but once (before I started Promacta) my blood tests came back showing I had liver inflammation. It was scarey, hemo was concerned- I had been on a lot of strong meds, Rituxin, etc. But come to find out it was from the Tylenol I was taking for back pain! Soon as I quit Tylenol, my liver was fine again.

I started Promacta at 25mg which had no effect. My platelet count was 8K. Upped the dosage to 50mg, and in 2 days counts went to 21K, and by the next week plates were up to 59K. Counts stayed steady around 40-50K.

Whichever drug he goes with, I think its important to watch that the platelet counts don't go too high because there can be problems with blood clots, stroke. Its recommended that the count stay around 50K. That's not likely a big concern right now, but if Rituxin kicks in while on the TPO, it might be something to watch.

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Re: Hospitalized and Treatment Moving Fast 10 years 2 weeks ago #21032

  • Sandi
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Great news! Very reasonable and valid options at this point, and, it makes the most sense. Hopefully you can get him out of there soon.

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