New Kid Seeking Friends and Guidance

Oliver - hopefully your new Hemo will make a difference. It really helps to have one that is not pushy and one that supports your decisions. Mine was always laid back. I'd go in for counts on my lunch hour, get a 3k, and he'd just tell me to go back to work. The entire month that I was doing Rituxan, I was under 10k while waiting for it to kick in. He never pressured me to use Prednisone during that time to get counts up. Since he was so laid back, I got that way too. I got detached from the number and only cared about symptoms. Like you said, I've seen worse bruises on my non-ITP friends and family than I ever had, although I did have a nasty one once.

It's your body, your say.

Oh BTW, yea, ITP sucks.
I remember watching 'Forensic Files' non stop after being diagnosed. It's real life murder stories and how they are solved. It was the only program with subject matter powerful enough to take my mind off of ITP. LOL, I think I saw every episode. Somehow, somewhere along the way, things got better. Perhaps reading story after story on this PDSA forum helped, don't know.

Hal9000 wrote: Oh BTW, yea, ITP sucks.
I remember watching 'Forensic Files' non stop after being diagnosed. It's real life murder stories and how they are solved. It was the only program with subject matter powerful enough to take my mind off of ITP. LOL, I think I saw every episode. Somehow, somewhere along the way, things got better. Perhaps reading story after story on this PDSA forum helped, don't know.

Thank you so kindly, Hal! *squishes* And by the by, I'll be more than happy to share my subsequent counts with you for your ongoing study once I'm feeling better emotionally and find a doc who's willing to work WITH me : )

Sandi wrote: Oliver - hopefully your new Hemo will make a difference. It really helps to have one that is not pushy and one that supports your decisions. Mine was always laid back. I'd go in for counts on my lunch hour, get a 3k, and he'd just tell me to go back to work. The entire month that I was doing Rituxan, I was under 10k while waiting for it to kick in. He never pressured me to use Prednisone during that time to get counts up. Since he was so laid back, I got that way too. I got detached from the number and only cared about symptoms. Like you said, I've seen worse bruises on my non-ITP friends and family than I ever had, although I did have a nasty one once.

It's your body, your say.

Thank you for your support, Sandi! *squishes!* I'm rather envious of your hem I've read a number of stories about folks with docs like yours, and I'm on a mission to find someone like that.

Oliver good luck with your hemo search! Sounds like you really do know your body and trust yourself to be okay, there is just a lot of pressure from medical people. I totally get that! Saying that "you have no choice" is outrageous. No wonder you don't feel empowered! I have had ITP for 9 years and omg I've come up against some hysterical doctors and nurses. They are used to being in a state of crisis I think, and the obsessive control that comes with it. Plus there is a lot of misinformation about ITP. I'm on my third hematologist and he is the best. He trusts that I am okay- he said he would be comfortable with me getting a colonoscopy with a count of 8K. Then the gastroenterologist wouldn't even do it with a count of 80K.
I have no problem with bleeding even at counts of 1K 2K and 3K- been there with no symptoms. Some people have other mechanisms that kick in when platelets are low- there can be micro-particle platelets that are too small to count, and platelets that are more activated. There is much more going on than just a platelet number. But it took me about a year and a calm hemo before I got comfortable with low counts. My target range that my hemo and myself decided on is counts between 10- 100. Neither of us want counts above 100 while I'm on Nplate because of the higher risk for stroke, and blood clots.

poseymint wrote: Oliver good luck with your hemo search! Sounds like you really do know your body and trust yourself to be okay, there is just a lot of pressure from medical people. I totally get that! Saying that "you have no choice" is outrageous. No wonder you don't feel empowered!

Yeah, I feel this is the biggest source of my anxiety in my current doc's office. I've heard various renditions of "you have no choice" and "that isn't an option for you" multiple times from multiple people (docs, CNPs, nurses).

poseymint wrote: I have had ITP for 9 years and omg I've come up against some hysterical doctors and nurses. They are used to being in a state of crisis I think, and the obsessive control that comes with it. Plus there is a lot of misinformation about ITP. I'm on my third hematologist and he is the best. He trusts that I am okay-

I can imagine! I'd love to hear some of your stories. I'm so glad you're working with someone now who is so well-informed and can be a "partner" to you rather than a "boss".

poseymint wrote: My target range that my hemo and myself decided on is counts between 10- 100. Neither of us want counts above 100 while I'm on Nplate because of the higher risk for stroke, and blood clots.

That sounds wonderful and perfectly logical to me. The target range my current doc is using is 50-200; which makes me VERY uncomfortable. When I stopped Promacta and was starting NPlate my count dipped into the 20s, and she freaked out and gave me IVIg (1g/kg) and also increased my NPlate on the same day. The following week I hit 212, which really disturbed me. The nurse practitioner laughed at me and told me I had gotten too used to low counts and that I was now worried about a blood clot with a "normal" count. She didn't believe me when I told her that that wasn't why I was freaked out-- that I was disturbed how quickly my count shot up (it had never done that before), and I was concerned about the instability of such a wild fluctuation. (It was only later that I learned that concern about a blood clot at that count would have been perfectly warranted.) She insisted that I was unsettled because I "wasn't used to a normal count", and that they wouldn't worry about the possibility of blood clots unless my count got up over 600!

Last time I saw her I told her that I'm going to the PDSA Conference (next week!!!). She had never heard of PDSA (which was a bit disconcerting to me), but was open to the idea of me bringing back resources for practitioners. I REALLY hope I like the new doc I'm seeing next Monday and end up switching offices, but I strongly feel I should bring back some materials for my current office.

Thank you kindly, poseymint!

I don't have much of anything new to add Oliver, but just wanted to reaffirm that having the right hematologist makes all of the difference. I've been dealing with ITP for more than 30 years (I was diagnosed as a child and am still managing it now in my 40s), and until very recently I felt that I was constantly playing "defense" against my doctors. They wanted to treat more than I did, didn't appreciate my insights gained from my experiences with my condition. For much of my 20s and 30s I was able to treat with very small spikes of Prednisone when I had a crash, and was otherwise fine for daily life with counts in the 40 - 50 range. For a lot of that time, I didn't have a hematologist that was following me. I knew what a crash looked like in terms of blood blisters in my mouth and excessive bleeding, and they would often come after some kind of an illness. I hoarded old Prednisone prescriptions and would take 10mg once or twice after a crash and that was good enough to end my symptoms and get me back to my normal, safe range (certainly not normal counts). No doctor believed that a small spike was good enough to deal with a crash, and all of them always wanted to go after higher counts with guns drawn and days on end of 80mg doses of steroids. No thanks. None of them were satisfied with my normal range of counts which were safe enough for my lifestyle. None of them wanted to talk symptoms and all of them wanted to chase lab work numbers and get high counts.

In the last few years, my ITP has given me a bit more trouble. Prednisone spikes weren't working the way they used to and my normal counts were lower overall. (You turn 40 and things break! :lol: )I had to go through several hematologists who wanted to jump in and manage things a lot more than I wanted to. If I got counts below arbitrary numbers (less than 20 for example), they were quick to jump in and tell me to increase doses and wanted to manage manage manage! My current hematologist is awesome and doesn't hunt me down if I get a count less than 20 (my last was 11!). He is fine with treating the symptoms and not chasing the numbers. It has been the most relaxing experience of my long ITP history! I don't have to watch my back and play defense against doctors who are more likely to do me harm with excessive treatments. I've been treating with Promacta over the last few years and try to keep my dosage as low as I can get away with and not have symptoms.

There are lots of options and so often none of the urgency that hematologists might make you feel about rapidly throwing lots of treatments at you. When I recently got a low count as a part of my annual physical, I got a frantic call from the on-call doctor who wanted me to seek treatment immediately. I had to calm him down and tell him that I was following up with my hematologist, but all the while I was so thankful that I don't have to deal with smooth talking and managing my ITP treatment choices any more!

Good luck making your treatment decisions and I really hope you find a good relaxing doctor to see! It changes your whole perspective and would surely help with anxiety!

momto3boys wrote: I don't have much of anything new to add Oliver, but just wanted to reaffirm that having the right hematologist makes all of the difference...

Thank you so kindly for sharing with me! I'm feeling so much better and reassured hearing from you and others who have supported me in my feelings about my treatment. It's so easy to get bogged-down, overwhelmed, and caught up in the judgements of those who have little or no experience with ITP (or who are operating on misinformation). I keep pulling back and not talking about it (when I so desperately need to talk about it!) because so many people have questioned/judged me and are very quick to defend my doctors. It makes me feel very self-defensive and question my own judgement-- like maybe I'm wrong. I feel so relieved and fortified!

I'll let you know how it goes on Monday, either way.

Oliver - your current office doesn't seem to know how to treat ITP. They are treating thrombocytopenia which are two entirely different things. Many Hemo's do not know that ITP can also be a thrombotic disorder and that the risk of clots can be greater in a person with ITP than a person who does not have ITP. There are several reasons for that, but counts up to 600k are not okay.

They are also not following protocol with N-Plate because the manufacturer's recommendations clearly state that counts should be around 50k and counts should not be normalized. It amazes me that they would laugh off your concerns; they obviously have not read the warnings. We have had people here who have had clots and they can be very serious. If anyone ever says that again, ask them if they have read the N-Plate protocols or if they know about the relationship between ITP and thrombosis.

I asked my Hemo for years to test me for APS (Antiphospholipid Syndrome, clotting disorder) since 33% of people with ITP apparently have both. He laughed and refused on the basis that my counts 'went too low'. I finally had a Rheumatologist test me and I did have APS Antibodies, so my risk of clotting is higher than normal. I once read an article in Bloodjournal that stated that it's possible that the body lowers platelets on purpose to adjust for possible (unknown) clotting issues. The body is an amazing thing and that always stuck with me. I wish I still had that article. The bookmark got lost when my computer crashed a long time ago. Back when I was diagnosed (1998), the goal was to obtain normal counts. That has changed. The goal now is to maintain 'safe' counts. Many doctors have not caught up with the current thinking on managing ITP.

Oliver

I don't really have much to add here, advocate for yourself, you know your body better than anyone and your medical staff need to respect that. Normalising a platelet count in ITP is very old fashioned and completely against current protocols, aiming for a 50k count is the target of treatments.
Treat the symptoms not the count. My haemo is excellent at listening and likes her patients to self manage. She gives advice if I ask for it but on the whole she lets me manage my condition.

Sandi wrote: Oliver - your current office doesn't seem to know how to treat ITP.

I've been feeling this way for quite some time, and it really frightens me that my health is in their hands!

Sandi wrote: They are also not following protocol with N-Plate because the manufacturer's recommendations clearly state that counts should be around 50k and counts should not be normalized.

I tried to bring this to their attention, but somewhere in my doc's computer it says that the protocol for treatment with NPlate is:
increase by 1mcg/kg per week if the count is <50
50-200 maintain the same dose
>200 hold treatment for one week
if it's >200 2 weeks in a row, titre down 1mcg/kg

She won't listen to me. I had my mother-in-law come with me once for support when I saw my hem, but she buys into the idea that the doc is the professional and knows what she's doing. My mother-in-law asked if I was an unusual/exceptional patient because I did so much homework and knew my stuff. The doc just laughed and said that "young people" like to do homework and take their healthcare into their own hands, and old people prefer to just follow instructions. (I can imagine which demographic she prefers working with!) It felt like a pat on the head and being told "aww, you're so cute!" in light of the fact that she completely dismisses everything I tell her. It feels like my concerns are not taken seriously because I have anxiety and a medical phobia, and they chalk it up to "irrational fear".

Sandi wrote: I asked my Hemo for years to test me for APS (Antiphospholipid Syndrome, clotting disorder) since 33% of people with ITP apparently have both. He laughed and refused on the basis that my counts 'went too low'. I finally had a Rheumatologist test me and I did have APS Antibodies, so my risk of clotting is higher than normal.

I asked my doc to check for Antiphospholipid Antibodies, and she said they'd already done that and the test came back negative, so they're not concerned about clotting.

Sandi wrote: I once read an article in Bloodjournal that stated that it's possible that the body lowers platelets on purpose to adjust for possible (unknown) clotting issues. The body is an amazing thing and that always stuck with me. I wish I still had that article. The bookmark got lost when my computer crashed a long time ago. Back when I was diagnosed (1998), the goal was to obtain normal counts. That has changed. The goal now is to maintain 'safe' counts. Many doctors have not caught up with the current thinking on managing ITP.

I remember reading this in one of your previous posts, and the theory seems to fit with what I've noticed in myself. When my counts get up into the 50s I have even less bleeding than I did prior to ITP-- i.e. if I get a cut or accidentally bite my tongue it bleeds far less than it used to, or sometimes not at all. This is very worrisome to me.

I'm very hopeful and excited to met this new doc on Monday. He sounds good on paper-- the little blurb about him on the hospital's website says that his focus is on Hemophilia and other bleeding disorders, and he believes in a collaborative treatment approach. I have a list of "interview" questions for him, and a table of my treatments and counts to date. *fingers crossed!*

APS isn't the only reason for clotting in those with ITP.

Yeah, my gut told me APS wasn't the only reason to be concerned about clots... can't tell them that, though! Hopefully, I'll be out of there soon.

Oliver091117 wrote: I remember reading this in one of your previous posts, and the theory seems to fit with what I've noticed in myself. When my counts get up into the 50s I have even less bleeding than I did prior to ITP-- i.e. if I get a cut or accidentally bite my tongue it bleeds far less than it used to, or sometimes not at all. This is very worrisome to me.

I'm very hopeful and excited to met this new doc on Monday. He sounds good on paper-- the little blurb about him on the hospital's website says that his focus is on Hemophilia and other bleeding disorders, and he believes in a collaborative treatment approach. I have a list of "interview" questions for him, and a table of my treatments and counts to date. *fingers crossed!*

I just wanted to add that I have noticed this same behavior in the way that I bleed after having taken Promacta for the last few years. I would NEVER have been able to have a count of 11 and see no symptoms before taking the medication. It's really amazing to me how well my body is functioning at counts that are so low on paper. I think the TPO-RAs like NPlate and Promacta can really change the way that symptoms manifest and overall clotting/bleeding behavior in some people. For me ITP management is really all about the symptoms, and I'm happy with my treatment even if my counts look low on paper.

Your current office definitely sounds patronizing and hopelessly out of date with regards to treating ITP. I feel anxiety and anger just reading about they way that they have treated you and dismissed your concerns about clotting and safe count ranges. Grrr! Please update us after your appointment on Monday!

momto3boys wrote: I just wanted to add that I have noticed this same behavior in the way that I bleed after having taken Promacta for the last few years. I would NEVER have been able to have a count of 11 and see no symptoms before taking the medication. It's really amazing to me how well my body is functioning at counts that are so low on paper. I think the TPO-RAs like NPlate and Promacta can really change the way that symptoms manifest and overall clotting/bleeding behavior in some people. For me ITP management is really all about the symptoms, and I'm happy with my treatment even if my counts look low on paper.

Your current office definitely sounds patronizing and hopelessly out of date with regards to treating ITP. I feel anxiety and anger just reading about they way that they have treated you and dismissed your concerns about clotting and safe count ranges. Grrr! Please update us after your appointment on Monday!

Thank you for sharing your experience with me! I feel so validated and like I'm not crazy I will definitely keep you posted as to how it goes on Monday. *gentle squishes!*

Oliver
I can only chime in with others who have said a good hematologist makes all the difference in dealing with ITP. I have had 3 different hematologists in the same office and they have all been great. Their philosophy is that they are there to help me manage my ITP. My thoughts on treatment always matter. Good luck with the new hematologist and I hope your appointment goes well.

So, I met my new doc today. Definitely a big improvement. For starters, his specialty is non-cancerous blood disorders (not cancer!), and he is currently treating over 600 active cases of ITP. I also felt he was much better at communicating with me.

He said he's not comfortable with me going off meds since I had ANY symptoms prior to treatment, even if they were relatively minor, as if the same thing happened in my brain it would be a different story.

I had intended/hoped to keep my anxiety under wraps in order to remain coherent and able to process/communicate well. That didn't happen. When he started asking me about my anxiety and whether or not I was working with a therapist I got very upset and self-defensive and told him that I was concerned about discussing my anxiety because I felt that in the past medical professionals had dismissed my questions and concerns as "irrational fears". He said he only wanted to know so he could ask permission to be in communication with my therapist in order to better meet my needs.

He then suggested that he ask an MA to come draw a CBC, then we could talk some more while we were waiting on the results. I felt like he was giving both of us some time to regroup. When he came back he said he'd learned through trial and error that when discussing treatment plans once something's been said it's very hard to back-track. That being said, would I feel ok with a target range of 30k-50k? My count today came back as 58, and he gave me the option of staying at the dose of NPlate I've been on the past few weeks-- 5mcg/kg-- or going down to 4mcg/kg. I opted to try reducing my dose. He double-checked that my weekly appointment is this coming Thursday, and had the front desk put in a rush with my insurance to have the authorization switched to their office so I can start this week!

I'm also encouraged that he is familiar with PDSA and he also brought up Fostamatinib as a possible alternative to NPlate. He said he's not yet familiar with it, as it was just approved by the FDA, but he's willing to give it a go with me once he learns a little more about it.

It takes a while to build any relationship, but I'm feeling encouraged to give this guy a try. We'll have to get to know one another better, and see how my body reacts to this new treatment protocol. I'm not yet sure how we're going to adjust doses as I know TPOs can be notoriously finicky/ cause some big fluctuations, but I'm feeling relief and a bit of breathing room that it seems like he HEARS me.

Hope everybody's week is off to a good start! *gentle squishes*

Sounds promising Oliver. What a relief to have someone who listens to you.

Definitely sounds like an improvement and seems like he is willing to work with you rather than telling you what to do.

Sounds good! I'm glad you liked him.

I had my first NPlate injection at the new office today. Not only is this office directly across the street from my work (rather than a half hour drive away), but they have better hours as well-- I was able to schedule 7:30am appointments for the next couple weeks. (I work 8:30-5:00.)

Julia (my spouse) came with me; which was very nice. I'm still having a really difficult time with all of this. I'm definitely grateful for the improvements with this new doc-- better location, hours, treatment parameters-- but I'm struggling with feeling angry, bitter, and overwhelmed that I'm stuck doing this every week, quite possibly for the rest of my life. I'm having ups and downs, and the downs seem to fizzle out much quicker than they have historically. I'm grateful for that. Feeling rather melancholy at the moment, though.

I have International Folk Dance tonight, then tomorrow I head up to Cleveland for the Conference with a very dear friend of mine from dance. Really looking forward to that.

Oliver:

I thought I would be dealing with ITP for the rest of my life too, but I'm not. I struggled with ups and downs and treatments for 8 years then went into remission. You just never know. Try not to think of it as a burden to bear for a lifetime; for now it's an hour a week, then you are free to spend the other 167 hours any way you want. If N-Plate works well, then ITP really has very little impact on your life in the scheme of things. I remember feeling like you do now in the beginning of my diagnosis, and it does get better. You'll adjust.

I'm glad to hear that the new office is sounding better! Starting over with a different doctor is always difficult, even if everything is better than it was at your old office. Give yourself (and him!) time to settle into the new relationship. Enjoy your class and trip to Cleveland!

Hi Oliver,
Thanks for sharing your story. I have been searching for stories of other ITP patients who don't seem to be bruising, so I really enjoyed reading about the fact that you didn't bruise after slipping on some ice back in January. My three year old son was diagnosed three weeks ago, and after two treatments with IVIG (one a single dose, and the other a double), he has some minor petechiae, and I'm trying to figure out whether to even take him in for another CBC, since the poking really traumatized him at one point (they had a non-pediatric student nurse who was awful). Anyway, I hope your new hemo continues to work with you collaboratively. He seems to be a good listener, which is a great start! My family deals with a lot of depression and anxiety, so I know a bit about what it's like. Some of the newer meds are great, but it does take a lot of trial and error. Happy to chat about that "off line" (in private messages) if you're interested. Have a great week and thanks again!

Hi Maria,
Thanks for writing! Yes, the degree of symptoms can vary quite significantly with ITP. I also know that ITP is very different in children than in adults. I don't personally have experience with pediatric ITP, but there is a lot of good information available through PDSA, and other members may be able to give you more relevant information.

I would be delighted to talk more with you privately about depression and anxiety-related issues! I'm sending you a private message with my contact info.

Best,
Oliver

Oliver, some info that may be beneficial to you. Take a look at this PDSA e-news article from earlier this year.
pdsa.org/products-a-publications/e-news/2018-enews/item/1617-pdsa-enews-042018.html#Lipitor

At the bottom of the news article is a link to a study that I recently stumbled on and was reading. Here it is again:
"Atorvastatin May Reverse Corticosteroid-Resistant Immune Thrombocytopenia Via Improving Impaired Bone Marrow Endothelial Cells"
www.bloodjournal.org/content/130/Suppl_1/232?sso-checked=true

In the study they merely use a combination of Lipitor and the supplement NAC. Two very low risk drugs. What I missed before was that it appears this treatment is appropriate for antibodies against Megakaryocytes, that is, row 4 in my table. The tip off should have been the words 'steroid resistant ITP' and 'bone marrow'. The claimed complete response rate was quite good and appears to match the population size of row 4. About 20%. Recall that the claimed response rate of Fostamatinib/Tavalisse is 18%.
"
Although the results require further validation, the complete response (CR), response(R), and overall response (OR) rates were 23.1% (3/13), 46.2% (6/13) and 69.2% (9/13), respectively.
"

Also. I stumbled on a related trial in Peking China, which adds Danazol into the mix. I wonder if this regimen would work for both row 3 and row 4 antibodies.
"The Combination of Atorvastatin, Acetylcysteine and Danazol as the Treatment of Steroid-resistant/Relapse Immune Thrombocytopenia"
clinicaltrials.gov/ct2/show/NCT03460808

HAL,

Sorry I've taken so long to reply. I've been quite brain-foggy as of late and having some difficulty making my way through the articles, but they're rather intriguing!

My new doc is much easier to work with and open to input. I've been meaning to ask you-- would you mind if I shared your ITP types, etc with him? His nurse invited me to share my spreadsheet of treatments & counts so she can graph and analyze the data.

As always, thank you for keeping me in mind with your research/ reading-- I appreciate it!

How are things with you?

Oliver, I've had 'too many irons in the fire' myself. Too many end-of-year issues.

Just posted an updated version of my ITP table today. Still, no Fostamatinib success stories to represent in the table. Blah. Was so hoping it was going to work for Jason. Of course, feel free to share it with others. But I'd be prepared. They may laugh at you if you tell them you got it off 'the Internet'. Haha.

On the Lipitor (and NAC) article. I'm skeptical on the remission results. Just something to try.

For me, I've started NAC supplement and Lysine supplement about the same time as starting Danazol. I've got a change but can't point any fingers definitively as to why - too many variables. I think NAC has had two affects on me. I think it has 1) significantly lowered my Mean Platelet Volume (MPV) test result, 2) lowered Promacta effectiveness by about 10%.

The lower MPV is good, as it seems as though my platelets are less sticky/wacky now. I seem to get a bit less of a headache feeling or leg cramp feelings when at higher counts now. The lowered Promacta effectiveness is bad. I think the NAC is causing my liver to metabolize Promacta better/quicker resulting in proportionally lower counts with the same 12.5mg dose.

Question. Are you trying out how well lower doses of Nplate works? Take just enough to not have overt symptoms kind of thing?

Oliver --
It has been a while since I have posted, but I read your note and all I can say is "Good For You"! As all the great folks on this board have said, it is up to you to find what works best for YOU. As Sandy stated earlier, finding a hemo who LISTENS and understands is of critical importance. I have been sent home with counts of 0 before because my platelets are freaking AWESOME according to my hemo (humor, by the way).
I finally gave in and had my spleen cut out of me like a Christmas Turkey after 8 years of riding the lightning. The reason? Because everything else would fail, not because of the medication efficacy, but because my spleen "broke" according to my hemo and surgeon. Yes...broke. So I am glad you are doing well. Be happy, be safe, be you.
Tim

Your spleen didn't break! It's useful for many things!