Starting the Journey

Hey All!
I am new to this ITP world. IT has been a rollercoaster of a year. I was diagnosed with a spell of Bell's Palsy on April 13, My wife delivered a daughter on April 20, and I ripped my bicep tendon off the bone on April 27. Now this. ITP Diagnosed on October 6th, 2017. I went home from work and my wife asked what was on my forehead. I looked in the mirror and it looked like my scrub cap had stained my forehead. 30 minutes of scrubbing later it wont come off. No biggie. It will wear off. The next morning I was as at work, I work in a cardiac cath lab, and had what I thought at the time was just a rash of some sorts starting to spread in my extremities. Asked one of the cardiologist I work with what she thought it could be and she said it was not a rash. Decided to go to Urgent an care on the way home to get something for whatever I had. Turned out the "dye" on my forehead and the "rash" on my extremities was petechia. Did not even know what petechia was at that time. Heard about it and studied it in school a little but not something I had ever came across let alone had before. The labs came back and my platelets were at a whopping 1K. The doc said to go to the Hospital ER, albeit very carefully.
Get to the ER and get admitted right away. Docs upon Docs come and go. Many, Many tests ensue. Got a full abdominal ultrasound done. Normal spleen diameters. Normal everything. So that must be good. Next up, bone marrow aspiration. A little painful, not to bad. Come to find out that I did not really need it and it is not really a recommended test anymore unless there are other symptoms. Results were not instant but ended up all clear. Blood test for everything; HIV, HEP, Thyroid function, etc. All came back normal.
My Oncologist/Hematologist (Now that I need to have one) came in and said - Immune Thrombocytopenic Purpura (ITP)
A diagnosis of exclusion, a very fancy and formal way of saying....UUUUHHHHH we dont know!
So, he goes over my options.
Splenectomy, Rituximab, Thrombopoietin Receptor Agonists, High-Dose Dexamethasone, ImmunosuppressionAnti-D, Azathioprine, Danazol, Dexamethasone, IVIg, Prednisone, Vinblastine, Vincristine
He said to think about what I might want to do and in the mean time we will just start platelets. He said he would be back in the morning. So six units of platelets go in and I start researching. I am also a full time grad student, so research is something I am well acquainted to. Many, many studies and opinion pieces, articles, forums, journals. You name it and I read it. I have become an overnight expert on ITP.
My first plan of action...
Prednisone. Seems like the standard go to. They keep pushing IVIG but the kidney impairment scares me away. So just prednisone and we can reassess.
Just platelets and prednisone get me up 16K in two days. Looking good, so far. Then the next day they drop to 14k, then 11K, then 8K. You see the trend. That Thursday, Oct 12 I am now at 4K ....HAPPY BIRTHDAY TO ME!!!...Yes it really is my birthday and I will be celebrating by knocking down some cold ones! And by ones I mean IVIG! 2 rounds ordered due to the lack of response to the prednisone. Still concerned about the side effects but, according to research this is the next best option right now. Start IVIG at 4 K/CMM, 24 hours -17 K/CMM, 48 hours - 69 K/CMM, 76 hours - 116 K/CMM. Plus still on high dose steroids. They discharge me with instructions to get lab work and keep an eye on it. Everything is fine over the weekend. Get in for lab work and it goes downhill from there. Go back throughout the week to get labs. October 17 - 110K, October 19 - 75K, October 23 - 3K. Back to the ER! My oncologist tells me to switch hospitals as the one we were going to can not give me the more advanced meds. So different hospital and brand new Oncologist/Hematologist to break in. Back in on October 23. The new doc orders platelets right away. They have not quite made the connection that platelets do not do anything for me. But I do it. This time I want to add Nplate® (romiplostim)‎ plus IVIG. My thinking is that the IVIG will give me another two weeks or so and that will give the Nplate time to kick in. They want to start weening the prednisone as well.
Oct 26 - 12 K/CMM, Oct 26 - 30 K/CMM, Oct 27 - 43 K/CMM. Get to go home again. Have a great weekend with the family, meet my new nephew, spend time with my loved ones. Back to the lab on Monday, Oct 30 - 8 K/CMM
These numbers are not what was expected. Yay, another trip to the ER. YAY! Get a new Oncologist/Hematologist. Discuss many options with the new HEM doc. She seems to think and I think I agree, that when we did the IVIG the last time we saw the boost, but the weening of the prednisone was premature by the previous HEM doc. So it did not last no where near as long. The newest plan.

A burst course of Dexamethasone 40mg + Nplate increased dosage. Do this for four days and see.
Thats where I am at thus far in this new journey. I am doing what I think best for me. I will not have a splenectomy, even though every Attending, Resident, Fellow, Med Student, and lacky suggest it. All the research says to wait and that at best its a little over 50% successful anyway.
Anyone have any suggestions as to what, if anything I can do different, please let me know. I will take any advice I can get. Tell me what you would do differently or just tell me you agree.

Thanks.

Welcome to the group. Many here have very similar stories to tell.
You right about the platelet infusions, no need to waist time and money on them. ITP can kill them almost as fast as they're pumped in.
As for treatment, just be careful with multiple things going. First you don't want to be too high believe it or not. Second you may not know what worked if you get a bump in counts.
I have had IVIG a lot, generally keeps me at a safe level for a couple of weeks. Going straight to Nplate is interesting, that one is usually on of the last treatment options due to inconvenience and cost.
Interesting that you just got diagnosed, I started my ITP life in October last year.
Read through the different treatment strings, they help. There are a lot of knowledgeable people on here, been through it all and are willing to help.
GOOD LUCK!

This last round of IVIG lasted two days for me. I decided with the Nplate treatments over the others as the side effects seem less severe and its once a week. I work at a hospital so I have it set up to just get the shot while I am at work. I have pretty good insurance so I don't have to pay anything. Just need to find out what works best at this point so I can get discharged. Only time will tell.

Troy, when you say Prednisone 'weening' is that going from 50mg to 40mg, or 50mg to 0mg, or ? I don't think it is that unusual to have a better initial steroid treatment response than subsequent steroid responses - especially with a short IVIG response.

On the second IVIG treatment. Was that on the 24th and counts returned to 8 on the 30th, giving about a week for a response time?

For Nplate, did you start on a '1' Nplate dose? That is, 1 ug per kg of body weight. Are you now on '2' dose? Sounds like you are on a good track - progressively increasing dose...

Hi Troy:
It's great that you are doing so much research and advocating for yourself. It ends up being much easier than not knowing a thing and just going by doctor's suggestions. You're already ahead of the game...looks like you've learned a lot already. Having a medical background sure helps. Many Hemo's are not all that up to date with ITP so having knowledge yourself is key to managing it.

Going with N-Plate or Promacta in the beginning is a smart move. They used to save those for the end, but then people would spend six to twelve months trying all of the other treatments, only to end up on one of those two. At that point, life became more normal again. Hopefully it will work for you. They both have a high success rate for keeping counts stable. Be sure that your doctor follows protocol. I can tell you that we see some pretty weird and scary things here.

If symptoms are not bad (no bleeding), you could probably ask to go home. Few people are hospitalized with low counts. I've worked with counts of 3. Have you had the N-Plate injection yet?

Hal9000

They put me on Methylprednisone on October 6th...Not sure of the dose.
Date: Oct 05, 2017 09:59 p.m. CDT - 3 K/CMM - Platelets
Date: Oct 06, 2017 06:52 a.m. CDT - 4 K/CMM - Started Methylprednisone
Date: Oct 07, 2017 05:28 a.m. CDT - 6 K/CMM - Methylprednisone
Date: Oct 08, 2017 05:22 a.m. CDT - 11 K/CMM - Methylprednisone
Date: Oct 09, 2017 05:16 a.m. CDT - 10 K/CMM - Methylprednisone
Date: Oct 10, 2017 04:30 a.m. CDT - 8 K/CMM - Methylprednisone
Date: Oct 11, 2017 05:42 a.m. CDT - 6 K/CMM - Methylprednisone
Date: Oct 12, 2017 06:18 a.m. CDT - 4 K/CMM - Methylprednisone, Started 1st round of IVIG around 20:00 complete @ 03:00
Date: Oct 13, 2017 05:07 a.m. CDT - 17 K/CMM - Methylprednisone, Started 2ndround of IVIG around 18:00 complete @ 00:00
Date: Oct 14, 2017 05:43 a.m. CDT - 69 K/CMM - Methylprednisone
Date: Oct 15, 2017 06:14 a.m. CDT - 116 K/CMM - Methylprednisone
When I was discharged on the Oct 15 they switched to Prednisone 50mg twice daily
Date: Oct 17, 2017 06:14 a.m. CDT - 110 K/CMM - Prednisone 100mg
Date: Oct 19, 2017 06:14 a.m. CDT - 75 K/CMM - Prednisone 100 mg
Date: Oct 23, 2017 06:14 a.m. CDT - 3 K/CMM - Prednisone 100 mg
Back to the Hospital.
Date: Oct 23, 2017 02:50 p.m. CDT - 3 K/CMM - Platelets
Date: Oct 24, 2017 04:28 a.m. CDT - 3 K/CMM - Prednisone 100 mg, 1st round of IVIG at 21:00 - 0300
Date: Oct 25, 2017 03:27 a.m. CDT - 3 K/CMM - Nplate 1mcg/kg @ 12:00, Prednisone 80 mg 2nd round of IVIG at 18:00 - 00:00
It was on that until Oct 25 when they started weening, thinking its not doing anything.
Date: Oct 26, 2017 06:01 a.m. CDT - 30 K/CMM - Prednison 60 mg
Date: Oct 27, 2017 01:18 a.m. CDT - 43 K/CMM - Prednisone 40 mg
Date: Oct 28, 2017 - Prednisone 30 mg
The only side effect I have with Prednisone is high sugars. So the withdrawal was nothing but good for me as the sugar levels noticeably decreased right along with it.
Date: Oct 30, 2017 10:23 a.m. CDT - 8 K/CMM - Dexamethasone 40mg @ 0300
Date: Oct 31, 2017 02:36 a.m. CDT - 3 K/CMM - 2nd shot of Nplate 4mcg/kg @ 12:30

To Sandi:
Thank you. I research everything. My operations, success rate of drugs for anything, and pretty much anything me or mine are going through. I work with doctors and their flunky's daily. They on a whole, are not smart individuals. They know only what they remember. Do not get me wrong there are some superlative doctors out there. But they are very few and far between. Knowing from the inside how many times they get it wrong makes me even more diligent to not let them get it wrong on me.

We did break protocol with the Nplate. We increased the 2nd dose to 4 mcg/kg versus the recommended 2 mcg/kg. It is still below half of the max and I am really wanting a good result. I will not let them do that again and I have already told them that. Just figured boosting it along a little should be OK.

The only major symptoms I have from the ITP is petechiae. Its not bad and it does not bother me. I have had 3 nosebleeds thus far, unusual for me, from blowing my nose too hard. But I packed my nose with gauze and held pressure. Lasted maybe 10 minutes if that. As for the drug interaction and side effects, I have been super lucky thus far, and have had only issues with my blood sugar which was pre-diabetic levels before all of this.

For some reason the doctors here send you to the hospital under 10K. They wont sign the release until over 20K for two days. I can and will, if i deem necessary leave AMA if it comes to that. What truly boggles my mind is how many doctors try to push me to get a splenectomy. Houston is supposed to be the medical capital of the world. You would think they could keep up on the literature of the diseases they have to treat. The research out now says otherwise, all of it. And don't get me started on the push to do Rituximab. Even when I have told them and we agree on the next course of treatment they bring it up. Very frustrating.
Thats where I am at as of 21:58.

Troy:
Wow - I'm impressed with the knowledge you've gained so fast. I have also had a few bad experiences with doctors and have a lack of trust. The mistakes cost me in big ways and they never knew it - just went about their lives. I will not let that happen again. You apparently see it first hand and it's good that you have that awareness. You have a huge advantage.

I think at this point, I'd take it easy on accepting any more treatments. If Dex or N-Plate kick in, you won't know which one is working. Also, Dex can shoot counts up pretty quick as can N-Plate and you don't want a clot. I'm sure you know that while using N-Plate, counts should stay around 50k. Higher counts can be dangerous. A common error that is made is that too many treatments are given at once and when they start to work, no one has any idea which drug caused the response. Another problem is that with both of those drugs, you can get an initial skyrocketing of platelets but they both can result in a crash in a week's time. You will not be able to gauge how this particular dose of N-Plate will work for you using Dex along with it. It's a bad combination for those reasons. It would not be a good idea to add IVIG again to that mix, as tempting as it might seem at this point.

They won't release you until you hit 20k? That is a bit strange. I was never hospitalized, just sent back to work. You're right about splenectomy, it's becoming obsolete for ITP but is still a favorite among many doctors. Old school thinking, I guess.

Hopefully you're counts will be up some tomorrow. I certainly hope so with that combination.

Love that data Troy.
In reference to my treatment table. IMHO, the first IVIG treatment had row 4 written all over it. The second IVIG treatment had 2a written all over it. Also, that ultra short first Nplate response did justify the jump to the higher '4' dose. If row 2a is at play then a 4 or 5 dose will probably see a clinically useful response. If row 4 is at play then a Nplate dose higher than 6 would be expected.

Good luck, and keep the data flowing

In 2014 when I was first diagnosed with a count of 12 I was admitted, weighed and given a stat dose of Prednisolone 45mg. 8 hours later my count was still 12 and I was told great the steroids are holding your count you can go back home, keep taking the pred daily and come back to Haem clinic in 3 days.

Welcome Troy,
I hear you about needing to stay on top of doctors so that they don't make crazy stupid decisions that harm us. I have had so many bad ones over the years. Definitely an excellent move that you have arrived at one of the TPO-RAs so quicky. Nplate and Promacta do very well for many of us on here without a lot of the toxicity that other treatments have.

I've had ITP pretty much all of my life. I was given a splenectomy as a child (at Texas Children's in fact, I grew up in Houston) because that was the primary treatment back then if IVIg and steroids didn't fix things. Unfortunately, it didn't work for me, so I'm still managing my ITP 30+ years later. I've been on promacta for more than a year and things have been going well. My counts are near the target of 50 for the most part, and I don't have any side effects to affect my quality of life.

Here's hoping that NPlate does good things for you. Keep us posted and good luck breaking out of hospital jail. If you aren't having active bleeding, there's really no call to keep you there for just doing lab work!

Troy,
I have been at the dreaded 10K or below several times over the last year. My doctor is able to do IVIG in his office (Fort Worth Cancer Center). I have refused the hospital more than half the time opting for in office IVIG. The only times I have chosen to go to the hospital is when I have had active bleeding. My doctor has been fine with that and has not really pushed back as long as we monitor closely to ensure the count does begin to climb.
On that note I have looked back at my counts and treatments and it does look like I have a better IVIG response from the hospital verses in office. This could be different brands of IVIG or that the IV steroids combined with IVIG in the hospital work better. In the office they only give me the IVIG.

More likely it's due to the steroids

Troy looks like you are doing all of the right things and are very smart about it! Hang on to your spleen! haha They will try to get it. When I heard the doctor say that he wanted to remove my perfectly healthy spleen I thought he was joking. ITP can be temporary for many people, so anyone should give it at least a year before they consider splenectomy. Yes, very odd that they put you in the hospital and keep you. When I was first diagnosed I went to the ER in San Francisco area with a platelet count of 6K. I had no bleeding, no bruises- the ER doctor looked at me like "nothing is wrong with you, what are you doing here?" They did a blood test, sent me home with some prednisone and told me to call a hematologist on Monday. They didn't even care if the prednisone brought my counts up. A very different attitude than what you're experiencing!

What I realize after 9 years with ITP is that I am okay with low platelets. For me its really not a medical emergency. I have had counts down to 1K and my hematologist had me take some prednisone and bumped my Nplate from 3mcg to 5mcg- sent me home. As you said, it is against protocol to bump up Nplate like that but it worked for me. For many people Nplate doses can sort of build up to reach the fullness of the dose at about 2weeks. Example: when I got the increase dose of 5mcg, my counts went from 1K to 15K, but that dose hadn't reached its peak. So the next week I got another 5mcg and my counts jumped up to around 85- the two doses working together. The third week my counts were 70K. For some people the 3rd week counts can jump really high, depending on how your body responds to the drug. My counts are pretty stable on Nplate I think because dose #1 has worn off by the time I get dose #3.

Probably too much information- haha but just to say Nplate can be a tricky drug. That said, its my favorite of the ITP drugs, I've been on it over 2 years, I have no side effects and going in once a week is easy. Rituxin didn't work for me. Dexy made me crazy. I've never had a bone marrow biopsy- not necessary. I've never had platelets because they don't last more than a day, nor have I ever had IVig because my doctors never thought my low counts were a problem, plus I respond to prednisone which is cheap and easy. When I was first diagnosed, I read on the Mayo Clinic website a caution saying that the treatments for ITP can be worse than the disease. The treatments can be fatal but the disease rarely is. That warning has since been removed but is still true. Good luck- you are doing great with all of this!

My counts were all over the place when I was on Romiplostim. I am much happier on Eltrombopag there seems to be more stability.

Just a quick update on my progress since last I posted.

10 K/CMM
Date: Nov 02, 2017 04:15 a.m. CDT
So double up from the 5K from yesterday and am hopeful for more of the same tomorrow. Another round of DEX 40mg today to weaken my immune system even more.
Feel good, NBP is fine, HR is fine, no fever, no petechiae, no bleeding events. Just chillin in my "hotel" room watching more TV then I have in the last several years.
Docs in and out. Still wanting my spleen. Some even suggested today to start a different course of treatment. Stupid Fellows.

poseymint wrote: Troy looks like you are doing all of the right things and are very smart about it! Hang on to your spleen! haha They will try to get it. When I heard the doctor say that he wanted to remove my perfectly healthy spleen I thought he was joking. ITP can be temporary for many people, so anyone should give it at least a year before they consider splenectomy.

I do not know why they insist on doing it all on an inpatient basis. Guess they are worried about internal bleeding, but I figure if I do not even have Petechiae then chances of something internal, barring accident, would be slim to none. I just listen to them for now. Cost me less in the long wrong to be inpatient treated so that is a plus. Plus the food is not all that bad. LOL

poseymint wrote: What I realize after 9 years with ITP is that I am okay with low platelets. For me its really not a medical emergency. I have had counts down to 1K and my hematologist had me take some prednisone and bumped my Nplate from 3mcg to 5mcg- sent me home.

Prednisone did not work for me. Did not even keep me up a little. The second time my count plummeted I was on a 100mg a day and still got down to 3K. Only on my second dose of Nplate, but it seems to be bringing it up.

poseymint wrote: When I was first diagnosed, I read on the Mayo Clinic website a caution saying that the treatments for ITP can be worse than the disease. The treatments can be fatal but the disease rarely is. That warning has since been removed but is still true. Good luck- you are doing great with all of this!

I love this warning and the truth that it tells. So many of the docs I have seen have suggested the harshest course of action first. Without all the research I might have just listened and did what they suggested. I am just glad I did the research and found this site.

Thanks to all as the advice through experience is irreplaceable!

yes you are so right in what you are doing- relaxing and giving the drugs time to work. Trust in your symptoms, it sounds like your body is taking care of it. There is a hysteria around low platelets we all have seen. omg they want to change your drugs ? crazy but it often happens they want to throw everything at a person at once and switch drugs before they've given anything time to work.
Most people can live with low platelets from what I've seen(not everyone). There has been some research and it seems some people have micro-particles or fragments of platelets that do the job but are not picked up in the count. Also when counts are low, they have discovered that the platelets become activated so do more work more quickly. And the blood clotting cascade is very complex so when one part is missing there are 50 other chemicals that can pick up the slack.

Oh my you have kitchen sink doctors! Your instincts are correct, Troy.

Just an update....
Woke up with 35K this morning! Hopefully, fingers crossed and prayers up, that the Nplate is kicking in. Got my discharge and am resting comfortably at home. Nice to be home with my kids and wife. Never did get the ultrasound or the MRN but they said they would schedule it outpatient. I did not end up taking any new meds for the nerve damage. I am just going to deal with it for now. Do not want to risk anyting reacting with the Nplate and having a setback. Right now the only thing running through my system is the rest of the steroids and the Nplate. So, I am just watching and seeing. Blood work Monday and Nplate Tuesday.

That's great news! Hopefully the counts will keep going up!

If my counts had dropped while taking Lyrica, I would have considered that to be the least of the side effects. It was THAT bad.

coach-troy@hotmail.com wrote: ... So, I am just watching and seeing. Blood work Monday and Nplate Tuesday.

How are things Troy?

Hal9000 wrote: How are things Troy?

Thanks for checking in!
Went Monday and the platelets had dropped to 12 K. They said they wanted to put me inpatient. I asked why? No symptoms at all. Not even petechiae. I eventually talked them into monitoring from home. I would come in at the first sign of any complications.
They started me on another pulse of Dexamethasone 40 mg a day for 4 days. I am making them taper this one a little bit. They cold turkey-ed me last time and I had a couple of rough days following: super lethargic, flu like symptoms, sever mood swings, etc.

Tuesday I got another Nplate shot. 6 mcg/kg this time. Up a little from the last, which was 4 mcg/kg.
I go for more labs this morning. I can go at anytime today, but for some reason my body does not let me sleep on lab days. I woke up at 04:00 and just could not go back to sleep.
Other than the numbers I feel fine. No symptoms. So, just wait and see. Hope the Nplate will take effect any day now!

I will post later today and update.

Thanks again.
Heal me, O LORD, and I shall be healed; save me, and I shall be saved: for thou art my praise. Jeremiah 17:14

Sorry you're back down. Dex usually is a cold turkey treatment. Four days on and then off. The side effects can be pretty bad for a few days after stopping the drug. I'm glad they let you stay home!

49K this morning!!! Doc said just stay the course for now. Blood work and shots on Monday.

Praying they stay there for awhile! The withdrawal was harsh I think that’s why the want to taper a little. Anything that helps.

Good to hear Troy. A lot better then the 10 from last week, heh?

D.Mann sent me a spreadsheet of his treatments recently. Was looking over it yesterday. Strangely or not, his responses seemed to align a lot with yours. Prednisone alone didn't work. IVIG alone didn't work. But (hospital) Methylprednisone combined with IVIG did work - for about a week. Wow. Really strange. Need to get a better handle on this.

Welcome to the club Troy. I think everything's been said on teh options and this site has great resources regarding all possible treatments. Something I would mention, and I only found this out by researching the specs of the blood testing machines, they only register platelets of a specific size. This can actually give false readings as the machines fail to register 'baby' or growing platelets that are present in the blood stream but just not at specfication size. This can be one reason why readings are all over the place (see my posts for weird readings lol).

I decided against the N-Plate weekly and went for rituxan - got 3 years remission out of the first dose, now on a second course and its looking good again. Worth considering an it removes the need for injections each week....

So blood work on Monday came back at 3K. Could not talk them out of an inpatient stay this time. Was supposed to get my Nplate shot today while at the lab but the dose was not adjusted correctly so I told them to fix it or I would just get it while I was an inpatient. They called my Hematologist and he said he did not want to go any higher as he believed it was not working. I quoted the protocal to him from the company and he said he still did not want to go up. If he followed protocol it would still only be at 7 mg/kg. Still not max dose.
Previously posted:
This will be my fourth Nplate shot with no real means of success. I’ve been on Dex to boost the platelets in the mean time but I crash as soon as I’m done with the pulse.
How long should I give the Nplate to work?
My Hem is already talking about switching it up. The trials said it could take anywhere from 3-8 weeks to get a response. I’ve not taken the highest dose possible. Last dose was 6mg/kg. Have some petechia today but that’s it so no real concerns as of right now with the platelet count being that low. They do want me to go inpatient again. But they seem to always want that anywhere under 20K.
So, I am back on a Dexamethasone 40 mg x 4 day cycle. Got one round of IVIG. Got 6mg/kg Nplate shot, the rest of the dose to get me to a total of 8mg/kg should be here today. They did not have anymore is what they said.
Platelets up to 15K this morning. Thats a plus. Just waiting on more drugs and a count of 20.

Hmm, I've read of folks not going to Nplate max dose before. I guess now I know why, doctor cuts it off early.

You know with Promacta each step is a doubling of dose: 12.5, 25, 50. But the highest recommended is not 100, it is 75. If you do the same with Nplate it would go: 1, 2, 4. Then to match Promacta the highest would then be 6. I guess I was thinking / presumed that Nplate went to the higher numbers because Nplate is *not* metabolized by the liver, like Promacta is.

Would that be IVIG with Methylprednisone or Prednisone? If past is a guide, Methylprednisone should get counts up nicely.

Hal,
Its IVIG and Dexamethasone. The Methylpredisone did not work for me the first time i used it. I was on it around 10 days with no bump in platelets. Then they gave me my first IVIG and switched to prednisone for two weeks. I got up to 150 with the first IVIG then it tanked with just the prednisone. Of the steroids Dexamethasone seems to be the only thing that works.

Is it possible to get another Hemo? It's very frustrating when they don't want to follow protocol and give up too fast.

I already switched. When we were playing phone tag about the dose I told the nurse it was of concern for him no more as I am no longer on his service. Hematologist in Houston are on every street corner. Im even sending my chart and documentation to a doctor at MD Anderson who is an ITP specialist, but my insurance doesnt cover him. But a friend of a friend asked him to look it over for me. Now its just waiting on the drugs.