Be a part of the ITP community and stay informed.
Login to your account or REGISTER
.

•  Web site Help & Info

Welcome, Guest
Username: Password: Remember me

TOPIC:

Feedback requested after Several Failures 5 months 3 weeks ago #70011

  • lovinghusband
  • Offline
  • Posts: 32
  • Thank you received: 0
Hello -
My wife was hospitalized on 6/5/2020 with platelet count of 1,428, and released on the third day afterwards.
Previous to this event she'd only been infused around Feb 2019 before when she had the flu, platelets were at 9,000 and she was infused, released and seemed to have no lingering issues. Subsequent CBCs showed counts of around 100,000 which were deemed normal and she stopped seeing that hematologist after the flu hospitalization.

Since 6/7/2020, we are now working with a hematologist but she has (after 4 months) thrown her hands up and stated we needed to see the surgeon for a splenectomy. Recent platelet counts are falling back to 2k, 4k, 8k, 3k, 2k...all below 10,000 after IVIG provides a temporary boost. IVIG is now the only life-sustaining treatment which she is receiving once a week.

Details (serially in order):
* Prednisone: FAILED (60-mg), treatment terminated
* Nplate: FAILED, terminated after 3 sessions because switched to RITUXIMAB
* Promacta: DID NOT ATTEMPT, as hematologist states it's similar to Nplate
* Rituximab: FAILED, terminated after 3 sessions
* Platelet infusion: FAILED, approximately 10/6/2020 after infusion only boosted from 2k->4k during hospitalization
* IVIG: currently weekly therapies to keep her alive

Wife just completed a CT-scan and bone marrow biopsy last week and we are awaiting results to see if there is a smoking gun.
In parallel, I'm seeking a 2nd opinion from a hematologist, researching surgeons for splenectomy and researching these forums.

Any new "advice" in terms of a strategy would be appreciated. My wife is very frustrated and the side effects are nasty. I've already found a new drug by reading these forums that has not even come up in conversations with the hematologist.

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 5 months 3 weeks ago #70012

  • MelA
  • Offline
  • Posts: 776
  • Karma: 2
  • Thank you received: 251
Am I understanding right - your wife had 6 treatments in 4 months?
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 5 months 3 weeks ago #70013

  • mrsb04
  • Away
  • 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
  • Posts: 1815
  • Karma: 7
  • Thank you received: 517
Wow what a lot of treatment changes, no chance to see if any were going to have an effect. 3x Nplate then classing it as failed is ridiculous.

Platelet infusions should only be used if there is life threatening bleeding, will only provide a temporary rise and are a waste of a donation if administered as a treatment to raise count in the absence of life threatening bleeding

Rituximab should be 4 infusions and can take up to 12 weeks to work after the course has been completed.

Romiplistim (NPlate) and Promacta (Eltrombopag) have different modes of action.
Please read this link www.ncbi.nlm.nih.gov/pmc/articles/PMC6515841/. It was published last year and is extremely well referenced. I suggest you ask your wife's haemo if she has read it.

The abstract states "Some patients do not benefit from the first TPO-RA they receive, so it is assumed that the alternate TPO-RA would have the same outcome. However, eltrombopag and romiplostim have distinct pharmacodynamic and pharmacokinetic properties and may have different tolerability and efficacy in individual patients with ITP. Published retrospective studies showed that >75% of patients who switched to the alternate TPO-RA maintained or achieved a response with the new treatment. Notably, most patients who switched due to lack of efficacy with the first TPO-RA responded to the alternate TPO-RA, which demonstrates an absence of cross-resistance between the two drugs. Therefore, switching to the alternate TPO-RA if the first TPO-RA fails to demonstrate a response should be considered before the use of a less-preferable option."

There is another TPO-RA recently approved by the FDA called Avatrombopag which has no dietary restrictions. Not been approved over here in the UK yet unfortunately.

Well done on seeking a second opinion, I hope you get a better haemo than the current one who appears to be ill informed and not upto date.

Don't even think about splenectomy at this stage. There is no guarantee it will work and is not without risks.
Latest guidelines ashpublications.org/bloodadvances/article/3/22/3780/428877/Updated-international-consensus-report-on-the (weird looking link but it works) state "If possible, splenectomy should be deferred for ≥1 year to allow for remission"

Always question doctors about the evidence base they are using. Their practice must be evidence based and up to date. Each patient is an individual just because a treatment works for one patient doesn't mean it will work for another.
The following user(s) said Thank You: MelA, ImPatient

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 5 months 3 weeks ago #70014

  • lovinghusband
  • Offline
  • Posts: 32
  • Thank you received: 0
Yes, if you're alluding to 6 "types" of treatments from that bulleted list, correct.

The only active treatment now is the IVIG which she undergoes weekly, it's been three bottles: 400-ml, 200-ml and 100-ml for a total of 700-ml of IVIG.

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 5 months 3 weeks ago #70015

  • lovinghusband
  • Offline
  • Posts: 32
  • Thank you received: 0
Hello -
I really appreciate your detailed feedback! I, too, am suspect about her declaring a failure after only 3X of the rituximab. She's completely relying on platelet counts. She expected at least a jump to at least 30,000 after the 3X Nplate and then after the Rituximab as well; however, platelet counts typically fell from the previous week and haven't jumped over 10,000 with either. Now IGIV is my wife's lifeline, per the doctor.

I initiated a 2nd opinion in the August timeframe after prednisone failed and hematologist began mentioning splenectomy. Teladoc's expert generated a 21-page report which seemed empirically based and recommended the rituximab if insurance would pay for it. Hence, I gently prodded the hematologist to focus on rituximab and away from the Nplate. It was approved, but alas, it was stamped a failure after three visits. I'm now back in touch with Teladoc and they are/will be pulling the CTscan and bone marrow biopsy immediately. The CTscan of the abdomen (just this afternoon) showed the spleen as normal sized. We may need to meet with the local surgeon to get more details as my wife has already had two major abdominal surgeries twenty years back which could complicate any procedure. I'm unsure why the hospital is saying it's going to take 2-3 weeks for the biopsy results to complete.

One final thing to note, and I acknowledge more research on my part is required. But my wife's pain is very nasty and while she is on some existing pain meds due to previous spinal surgeries, etc, it does seem to have increased. It's as if all of these treatments have gas-lighted her pain. And the hematologist is indifferent to the topic of pain which is surprising because most of the infusions are cancer patients. Do ITP sufferers not also suffer pain? Or at least increased pain?

Sincerely.

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 5 months 3 weeks ago #70016

  • mrsb04
  • Away
  • 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
  • Posts: 1815
  • Karma: 7
  • Thank you received: 517
Do ITP sufferers not also suffer pain? Or at least increased pain?
ITP is not known to cause pain but pain it is a know side effect of IVIg. N plate can also cause bone pain.
If your wife is taking pain relief it should not be a NSAID (non steroidal anti inflammatory drug) or Aspirin.

Does Teladoc have haematology specialists? I would strongly recommend ditching your current haematologist and find one who who specialises in ITP and will see your wife face to face, pdsa.org/resources/find-an-itp-doctor.html

The whole point of treating ITP is to achieve a safe platelet count and not to normalise it.

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 5 months 3 weeks ago #70017

  • jl
  • Offline
  • Posts: 14
  • Thank you received: 0
Also, you mentioned that IVig is being administered weekly as a "life-sustaining treatment". I'm not an expert and quite new to ITP but, unless I have missed something, if your wife isn't suffering major bleeding, there is no reason to think her life is in danger.

Research has shown that life-threatening bleeding is very rare in patients with ITP. I would give enough time to the treatments and look for second opinions without the anxiety that something must be done immediately. All current guidelines recommend splenectomy only as the last resource, and after years (not months) of failed treatments. There are many things that could work for her before trying surgery.

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 5 months 3 weeks ago #70018

  • lovinghusband
  • Offline
  • Posts: 32
  • Thank you received: 0
Per "life-sustaining," the 1,428 count solicited a very dire warning from the doctor-on-call at the hospital. It really scared us because of those words, "you can die." It's been tough to erase this from our memory. In addition, they always bring out the "well, you're below 10,000 and we can't let you leave. We have to hospitalize you." We've been through about six of these scenarios where the CBCs are checked, they come out below 3-5,000 and we're told to head downtown to the hospital. Unlike many of you (?), this just began as a crisis and after four months of dealing with it and few answers but breadcrumbs, it's frustrating. Your response is calming to my heart and very appreciated.
She has the normal outward manifestations of bruising and blotches. She occasionally has blood from her vagina or stool but not large amounts. She says she "smells the blood," but I, myself, cannot detect the smell of blood. She also tripped and fell on the tile floor four weeks back and I was very scared because of the spontaneous bleeding warnings the clinic reminds us about once a month. Her entire left hip was swollen and purple-ish/blue/black, about 100-in square area. I was more concerned of her head as that impacted the floor.
Finally, yes, we are seeking a 2nd opinion which is underway and reviewing other specialists in the area; however, we're not in a super large metroplex so the level of expertise is most likely limited.

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 5 months 3 weeks ago #70019

  • lovinghusband
  • Offline
  • Posts: 32
  • Thank you received: 0
Hello -
Thanks for the advice. No, she's not taking any NSAID. She does have pre-existing conditions and previous surgeries which are challenging.
Yes, Teladoc, has their own oncologists/hematologists and I have spoken to them. However, initially the goal was to obtain an expert opinion so there was an intermediate hematologist assigned to me who then coordinated medical records and worked with the "expert" from Harvard who created the initial report, analysis and treatment recommendations back in, say August, timeframe. We're returning to the same people; however, it's unclear yet as they pull new records from the hospital locally, if they will go back to the same "expert" for another opinion from him.
I appreciate your valuable insight and as of yesterday I'm looking into identifying another hematologist possibly outside of my state, someone who can act as the "lead" on this and then direct treatment through the local hematologist. The local doctor is very logical and didn't feel threatened about us seeking a 2nd opinion originally, but I'm unsure if such a model would work. I have to speak carefully as I'm very analytical and some doctors feel threatened when you bring up a list of prepared questions each visit :)
I agree with you in that one should not be infatuated with platelet count, something I've recently learned. It's really about your body and how it is reacting.

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 5 months 3 weeks ago #70020

  • mrsb04
  • Away
  • 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
  • Posts: 1815
  • Karma: 7
  • Thank you received: 517
some doctors feel threatened when you bring up a list of prepared questions each visit: in which case they are not good doctors. Your wife knows her body better than anyone else. Doctors need to listen to her.
As for the drivel about low counts, I worked on the front line with counts in single figures many times.
I took a holiday with my son that involved 18 hours travelling to get there. Before we left the UK I asked my haemo what was a safe count to go with. Reply was anything above zero, go enjoy yourself.

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 5 months 3 weeks ago #70021

  • lovinghusband
  • Offline
  • Posts: 32
  • Thank you received: 0
Wow! Thank you so much. We really needed to hear this feedback! It's so encouraging!!!

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 5 months 3 weeks ago #70022

  • MelA
  • Offline
  • Posts: 776
  • Karma: 2
  • Thank you received: 251
some doctors feel threatened when you bring up a list of prepared questions each visit
I type up 2 copies of my questions when I go to any doctor - 1 for me & 1 for him/her and that way all my questions are answered and none forgotten!! Boy if a doctor didn't like that then I'd leave that practice!

As to pain - I can't imagine why lower platelets would cause pain. Even my bruises never hurt & I looked like I had been beaten with a 2x4 in a back alley! All these years and no pain from ITP.

I'm glad mrsb is helping - she is a gem and a gem of knowledge!

Regarding below 10k - 2 people in a group of ITPers who would meet here in my city were both about 5k and couldn't get their count up. One went to London for a test & found it was her spleen destroying her platelets & had it removed once back in the States, failed & her count back down to 5k. The other a man stayed around 5k, he & his wife went on to adopt a child and their natural children were grown.

I moved to Tokyo shortly after being diagnosed & one 60mg of prednisone not knowing if I'd have a hematologist once there. Then we moved to Hong Kong from Tokyo. Couldn't let ITP stop my life.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
The following user(s) said Thank You: mrsb04

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 5 months 3 weeks ago #70023

  • lovinghusband
  • Offline
  • Posts: 32
  • Thank you received: 0
Hello -
I greatly appreciate hearing about your experience and we are uplifted by your strength. Just the many quick responses make us feel we are not alone.
Regarding pain: yes, ITP itself may not cause pain but the treatments certainly do and her pre-existing pain (I believe) is exacerbated by the not just the platelets but the ITP. In any case, I'm going to start a separate thread seeking advice on procedures in light of low platelets.
Yes, several strong people have already climbed the Everest of this disorder and I am grateful to learn and we are feeling more empowered to fight.

Question: how does one test the spleen to understand if it is destroying the platelets? From what I've read there are multiple culprits hiding behind the spleen if splenectomy is a failure, like the liver, etc.

We greatly appreciate the wisdom of everyone who is educating us.

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 5 months 3 weeks ago #70024

  • gozorakgogo
  • Offline
  • Posts: 97
  • Thank you received: 15
As someone who was sent to the hospital(this past July 8)after being told that I had to go immediately to the ER based on my platelet count which was 2 due to the blood test conducted as a result of my visit to the Dr because of my sudden bruising and bleeding and smelling of blood and black lesions on my tongue I too was scared. I literally thought I was done for based on how I felt and how I looked. Then to be told that I had to go to the ER immediately(and not to the ER of my nearest hospital but to one quite a bit further away because as I was told my hospital wasnt equipped to deal with my condition which made everything even more frightening) and yes I assumed the worst. I was kept in hospital for 6 days, released after IVIG brought my level up to 42 and then had to go back into hospital 6 days later when my level was back down to 3. I was told that there was a significant risk of bleeding in the brain. I had a "fall risk" band on my arm during my first hospital stay and was not allowed to leave the bed until day 4 and that was only after I snuck out and proved to them I wasnt a fall risk by doing jumping jacks and push ups. I never go to the dr am never sick or ill. Hadnt had a prescription filled for anything in over 20 years and then all of a sudden this past june the bruises and bleeding came out of nowhere and I found myself in a hospital for 10 total days after never having spent a night in hospital before. Quite the shock to the system.

It was only after reading the experiences of some of my fellow ITP sufferers here that I began to understand that Im not going to die or be disabled. It took me many weeks to come around to that point of view...no disrespect fellow board members lol...because of all the scary things I had heard from Dr's before I had my own Hemo. But as it turns out the advice on here is quite helpful and calming.

Prednisone did not work for me and they tried that first. The IVIG was only a temporary remedy for me. The platelet boost lasted less than a week. The ER on my second visit decided to give me multiple platelet transfusions which of course failed immediately as they were immediately destroyed by my immune system. Actually isnt that an indicator that your low platelet levels are due to an autoimmune disorder instead of something more serious within the bone marrow?

As far as the Nplate and Ritux treatments. They can take weeks for one to see a positive impact. I had 4 Ritux weekly infusions along with Nplate back in early August. I have continued to receive a weekly Nplate injection since then and I have seen nothing but significant improvements. From an average platelet level of under 10 back in july and august to now weekly levels well above 150 for the last month and a half. In fact 3 weeks ago my weekly pre injection CBC had my level at nearly 400 and my hemo decided not to give me the injection that week. Last week I couldnt make it to my weekly visit and missed my Nplate injection and my levels continued to rise over the prior weeks reading. The point is that it takes time. I didnt see positive, encouraging results until like the second week after my final Ritux infusion. Why they would stop after only 3 treatments with your wife I dont know or understand. Nor do I understand why the decision to do so because of Nplate was made. Again, I received both and it was worked wonders so far. Im not the one to listen to however. Members like Mrsb and MeIA are. Im just relating my experiences.

I am fortunate because apparently I show no visible signs of having low platelet levels(bruising, bleeding, smelling blood etc etc( unless my levels are under 10) The only thing I do feel is heavy fatigue anytime my level is under around 30 or 40 and it only gets worse as the counts get lower. I havent been there in a while but for me that was and is depressing because I had always been full of energy.

It turns out this condition is a major irritant and not much more. For me at least. I no longer even care what my levels are so long as they are high enough for me to not be super fatigued.

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 5 months 3 weeks ago #70026

  • MelA
  • Offline
  • Posts: 776
  • Karma: 2
  • Thank you received: 251
You had asked: "Do ITP sufferers not also suffer pain? Or at least increased pain?"
That is why I mentioned I've never had pain due to ITP.

www.itpsupport.org.uk/images/downloads/Splenectomy_Inner.copy.pdf
Pg 15 mentions the test for checking where platelets are destroyed. However as you said, there are other locations in the body that clean the blood and can take over that job if the spleen is removed. And as I mentioned above the lady in our group went to London, had the test, results were spleen involvement, back to the States for a splenectomy, splenectomy failed and she was back to a 5k count. Lots of hope dashed, lots of money spent.

When is her next count?
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 5 months 3 weeks ago #70027

  • poseymint
  • Offline
  • Posts: 594
  • Karma: 1
  • Thank you received: 173
Hi Lovinghusband, Good that you are doing your research because I've found that ITP patients really need to get involved in their own care. Its a fairly rare disorder and many doctors over-treat and throw too many treatments at a patient all at once. When I first was diagnosed with ITP 10 years ago, I read a warning on the Mayo Clinic website that patients need to beware because "the treatments are often worse than the disease". That has since been taken down but something I've always remembered.

Your doctors want to hospitalize your wife, but not all doctors feel that low platelets are a medical emergency. Good you are looking into a second opinion. Before I knew anything about ITP, a nurse saw my platelet count of 6 and scared to death me saying I would have a brain hemorrhage. So I went to the emergency room at my hospital. The ER doctor (San Francisco area) looked at me like "what are you doing here"?! I had no symptoms of bleeding just a low platelet count. After sitting alone in a room for 4 hours it became clear there was no reason for me to be in the ER. They sent me home with some prednisone and told me to call a hematologist on Monday. I got a bill for $2500. that took me 2 years to pay off. That was an expensive lesson but I learned that with ITP you look at symptoms not just numbers. Since then, several nurses have wanted me to go to the hospital for low counts- no way.

That said, some people have bleeding issues so everyone has to kind of get to know how their body manages low platelets. I lived for a couple years with platelets below 10 because I couldn't find an acceptable treatment. I've had a count of 1 and was fine. My hematologist doesn't worry about me though when my count was 1, he increased Nplate and added some prednisone but I was not hospitalized or given platelet transfusion. I try to have counts between 30-50 but very often they are lower. So through experience you and your wife will find what you are comfortable with. And with many of us, its often different than what the doctors are comfortable with.

Promacta is unique and absolutely not the same as Nplate. We here have seen many people respond to one and not the other. I would definitely give Promacta a try. It has a high 80% response rate and many people have good success with no side effects. Its a pill you take once a day- very easy. Three injections of Nplate is not enough to tell if it will work or not. I'm not a doctor but I've been on both TPO drugs for nearly 10 years and from experience I know you have to give these drugs time to work.

I personally would not want to have my spleen removed during a pandemic, especially a perfectly healthy spleen that is doing its job. There are risks of infection being without a spleen. Some people go into a natural remission within the first year- ITP is not necessarily chronic for everyone, so I think its too early, as others have said, for talk of splenectomy. Thats my 2 cents. Good Luck! Try not to worry, you'll find your answers. Just keep educating yourselves.

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 5 months 3 weeks ago #70028

  • mrsb04
  • Away
  • 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
  • Posts: 1815
  • Karma: 7
  • Thank you received: 517
Question: how does one test the spleen to understand if it is destroying the platelets?
It is called an Indium 111 scan. Not available available in the USA. I live 15 miles away from a UK ITP centre that provides it. I had one, a time consuming procedure but absolutely fascinating to watch. It showed my spleen was destroying my platelets but I refused to part with it. Doing its job properly and in my opinion the risks associated with an elective splenectomy far out weigh the benefits, especially thrombosis, sepsis and the need for multiple regular vaccinations and increased doses of antibiotics, which would also destroy the good bacteria in my body.
From what I've read there are multiple culprits hiding behind the spleen if splenectomy is a failure, like the liver, etc
This is called the Reticuloendothelial System. It takes over the job of the spleen ergo platelet destruction may well continue. A good description here www.creative-diagnostics.com/the-reticuloendothelial-system.htm

If your wife chooses the Eltrombopag (Promacta) route be aware it can take a while to have an effect so she must not be disheartened if results are not immediate.

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 5 months 3 weeks ago #70030

  • poseymint
  • Offline
  • Posts: 594
  • Karma: 1
  • Thank you received: 173
Another issue re splenectomy-Please anyone correct me if I’m wrong about this! I believe you must have several vaccines before splenectomy, pneumonia vaccine etc. But Rituxin suppresses the immune system for at least 6mos so vaccines do not work properly. If your wife didn’t get the vaccines BEFORE rituxin then I believe that would make splenectomy all the more dangerous.
So add it all together- her flu vaccine likely won’t work well if it wasn’t given before Rituxin, plus threat of Covid, Rituxin has suppressed her immune system/knocked out the B cells... Plus remove her spleen? It’s too much immune suppression, it all seems too risky in my opinion. Great that you are doing your research! As others have said, take your time and trust your instincts.

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 5 months 3 weeks ago #70032

  • lovinghusband
  • Offline
  • Posts: 32
  • Thank you received: 0
Hello -
Wow, your response is packed with great information and knowledge.
Regarding your question on 3x Nplate and 3x Rituximab: my research and 2nd opinion concluded that rituximab would deliver the "best" response; however, rituximab was originally rejected by UHC so hematologist's preferred "go-to" treatment is Nplate. So we started Nplate and worked to obtain authorization on Rituximab but it took a few weeks. After 3x Nplate the hematologist declared it a failure, in any case, and we were able to start Rituximab. Why did we choose Rituximab from the outset? Two reasons. First, 2nd opinion recommended it and second, due to my wife's ongoing, chronic health issues, she didn't want the drudgery of having to drive 30 minutes each way to the clinic once a week for the rest of her life. It was a lifestyle choice, so to speak. Note that we've been "programmed" that Promacta and Nplate are lifetime drug therapy. There wasn't any communication that either one would sort of solve the issue and ITP would go away. In addition, Promacta's benefit has been downplayed as slow working, largely ineffective.

Can I ask a question? Did you receive Nplate and Rituximab at the same time, same day? Or were they administered serially.

One difference I see is that your condition was sort of catastrophic, in the sense it came out of the blue. I wonder if that was why you were able to achieve a remarkable recovery! I suspect that my wife's platelet level was always slightly below (maybe 100,000) and then just slowly decreased over a one year period until it hit 1,000.

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 5 months 3 weeks ago #70033

  • lovinghusband
  • Offline
  • Posts: 32
  • Thank you received: 0
Hello -
Awesome feedback. I'll have to unpack and research this over the coming days, i.e. the UK-based diagnostic.
With everyone's thoughtful responses, our positivity is growing and she's definitely interested in delaying a splenectomy.
So much to learn, to research.
Sincerely.

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 5 months 3 weeks ago #70034

  • lovinghusband
  • Offline
  • Posts: 32
  • Thank you received: 0
Hello -
Wife is scheduled weekly for IVIG, next one on Friday. CBCs are always drawn at the beginning to determine dosage.
Sincerely.

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 5 months 3 weeks ago #70035

  • lovinghusband
  • Offline
  • Posts: 32
  • Thank you received: 0
Hello -
Yes, hematologist administered those vaccines well ahead of time for the Rituximab.
Sincerely.

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 5 months 3 weeks ago #70041

  • JJ
  • Offline
  • Posts: 172
  • Thank you received: 59
I had the indium scan which showed that my platelets were destroyed in the liver so a splenectomy wouldn't work. I wasn't going to agree to have one anyway but it was interesting to do.

With regard to Nplate, there are ten levels to try although some doctors start at about level 3 instead of level 1. If you go up a level each week and then stay on the top level for four weeks before giving up, you can see how long it takes. Many patients get into remission after a while using Nplate.

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 5 months 3 weeks ago #70043

  • gozorakgogo
  • Offline
  • Posts: 97
  • Thank you received: 15
I believe that Nplate and Ritux are meant to accomplish separate things. Nplate increases the natural production of platelets in your bone marrow while Ritux weakens your immune system so that platelets will not be targeted and destroyed. This is how it was explained to me by my hemo. THis is why he chose to do both simultaneously

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 5 months 3 weeks ago #70044

  • gozorakgogo
  • Offline
  • Posts: 97
  • Thank you received: 15
The length of time that my platelets were low before I reached sub 10 levels and began showing the physical manifestations is not something that I know. It may very well be possible that my levels were low for a period of time. I had been feeling a degree of fatigue a year or so before I had my hospital visits and diagnosis. But it had been 3 years since I had last been to see a Dr and had a cbc performed. All was fine then I suppose since nothing about low platelet levels was mentioned.
Yes to answer your question. The decision to began Rituximab and Nplate simultaneously was made during my second hospital stay on July 23 of this year. when I had failed to respond to the platelet transfusions and Prednisone satisfactorily. I received Ritux and Nplate(I dont know the dosages off hand) every Wed over the following 3 weeks. After my final Ritux and Nplate treatment on Aug 12 I have continued to receive Nplate injections every week since. The 2 exceptions was about 3 weeks ago when my platelet level was nearly 400 and the decision to skip that weekly Nplate injection was made and last week when I was unable to make my weekly appointment. My levels do go up and down a bit from upper 300's to upper 100's from week to week. I have always wondered if in an otherwise healthy person do platelets levels naturally go up and down within the normal range or do they stay at about the same level?

My levels really began to rise and go over the normal level around August 24 and except for one week when it dropped to the 40's my levels have been well above 150 since that time. Since Ritux and Nplate

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 5 months 3 weeks ago #70045

  • gozorakgogo
  • Offline
  • Posts: 97
  • Thank you received: 15
I am fortunate to have good insurance. The Rituximab infusions were around $40,000 a piece and each Nplate injection is around $8000. And that is not even including the cost for the 10 days of hospital stays 4 of which were in an ICU(about $3000 a day)...there were the IVIG's and platelet transfusions as well adding to the total cost. So far Ive pretty much only responsible for around $5000 for total costs in excess of $300,000. My Nplate is totally covered and I now have in addition to the $4000 I owe(ive already paid $1000) I only my my $40 copay when I actually see the Hemotologist.

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 5 months 3 weeks ago #70051

  • lovinghusband
  • Offline
  • Posts: 32
  • Thank you received: 0
Hello -
This makes sense. Did you suffer adverse side effects?
Sincerely.

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 5 months 3 weeks ago #70052

  • lovinghusband
  • Offline
  • Posts: 32
  • Thank you received: 0
Hello -
Yes, it's expensive, $233,000 billed as of last week, largely from June.
Sincerely.

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 5 months 3 weeks ago #70067

  • gozorakgogo
  • Offline
  • Posts: 97
  • Thank you received: 15
the side effects I have experienced since July when this journey began was extreme fatigue and weakness(I have always been active and always running on my job up to houses to deliver mail and parcels). Couldnt do that any longer and did not have the the energy to do much of anything after work. The Prednisone added insomnia and extreme hunger. I was out of work for 7 weeks because my hemo advised a watch and wait until my level was over 50 and stayed there for a couple of weeks since I had been at level 10 or lower for most of the month of July. I tapered off the Prednisone the week before I went back to work and I admit that I pushed it to fast and skipped the last week of taper. About 4 days after my final dose I was so freakin fatigued. Even more so than from the ITP itself when I was at level 3. Luckily I got over that after a couple of weeks. Now I suppose its from the Nplate but I have stiffness and some pain in my hips and upper leg areas. Feels like my range of motion isnt what it once was. I can run but its not comfortable to do so and only now I have some good days where I feel a bit more "normal" I hope that return to "normal" is in the cards permanently instead of the every once and a while event

Please Log in or Create an account to join the conversation.

Feedback requested after Several Failures 5 months 3 weeks ago #70070

  • lovinghusband
  • Offline
  • Posts: 32
  • Thank you received: 0
Hello -
I appreciate your input and experience! Fatigue is there but overall pain is constant. She's on weekly IVIG and her veins are pretty much "shot" in her arms with great deal of pain. With everyone's help, I'm feeling more empowered and requested a PICC line yesterday BEFORE any more IV therapies or blood draws. The hemo doctor has concurred and we can get that installed. This week was very frustrating as there was no order for CBCs before the IVIG so we had no idea if last week's IVIG moved the needle. She's schedule again this Friday but she's fatigued, hurting and frustrated. I told her she could/should skip this week and just relax and heal up...to the extent she can. Supposed to see the hemo doctor after the CBCs and before the IVIG, but we've lost faith in the doctor. She'll undoubtedly grill us on why we haven't scheduled the splenectomy and I'll try hard to avoid conflict while noting that we're waiting for bone marrow pathology reports as well as the 2nd opinion. I believe a decent portion of her pain is due to the lack of her alternating 4-month spinal epidurals in lumbar and cervical area (the latter due to 2-level ACDF in 2013); however, that doctor has been difficult to reach and I'm wondering if he will be conflicted with the platelet count.
ALSO>>>> she's suddenly starting finding these bumps in multiple places on her body. They are extremely bizarre and disconcerting. One on her foot but also in arm and near lumbar. I found this article. I am assuming it's due to too much IVIG???
www.bmj.com/rapid-response/2011/11/01/folliculitis-extremely-pruritic-skin-condition-resulting-ivig-treatments
Sincerely.

Please Log in or Create an account to join the conversation.

BBB Cleveland logo Charity NavigatorGuideStar Seal NORD Member Badge 2021THSNA logo