TOPIC:

Yes, it sure is tough to find that perfect diet. I know exactly what you mean. If I actually cut out all of the things that I think I should stop eating, I'd be down to eating lettuce and radishes. Good luck with your food eliminations and I hope it works for you!

Sandi wrote:

Yes, it sure is tough to find that perfect diet. I know exactly what you mean. If I actually cut out all of the things that I think I should stop eating, I'd be down to eating lettuce and radishes. Good luck with your food eliminations and I hope it works for you!

I totally hear you. It's like we are in the dark ages of understanding all of these biological and biochemical factors in nutrition and dietary effects on genetic expression. I read about phytates and lectins and avoiding the nightshades/legumes/grains (a la whole30 and AIP)... then which things cause leaky gut... then that if you don't pressure cook (or prepare in such a way as to destroy lectins) vegetables originating in the Americas (those of us with European/African/Asian heritage), we end up with too many lectins and autoimmune issues. Argh! There really is nothing safe to eat! It's so frustrating to wade through all of this dietary information and misinformation. If the no sugar thing doesn't work again (it is really hard to make it sustainable long term), then I'm going to get a glucose meter and start measuring my own personal blood sugar reactions to certain foods to see what hits me the hardest and perhaps only eliminate select things. It's a process!

Good luck with your plant based diet. Even going sugar free, I'm not turning into one of the keto people because I really feel best when I have tons of vegetables and fruits. I really think we mostly can't go too wrong with those (except the whole tomato, pepper, zucchini, cucumber, legume controversy I keep hearing about).

I agree, I won't cut out fruits. I kind of thought the sugar/diabetes thing was weird too, but had to agree about the meat. I've never thought about it much, but what he had to say actually made me sick. I couldn't disagree with the logic.

Well, I ended up going for a count after all. I have been having symptoms (bruises, small blood blister in mouth) all coinciding with
my monthly bleeding (which was going horribly).
10/27/2017 20,000 plt

So my doctor agreed with my idea of doing a tiny spike of corticosteroids to get things over the hump to stop the bleeding. I love this office. They were totally unphased by my count and would have let things ride as is if it weren't for the bleeding. This is so awesome. Exactly how I have always wanted to have a hematologist react. These panicky ones who hate low numbers are so hard to talk down from their paranoia

So I'm doing a methylprednisolone pack (6 tablets day 1, 5 on day 2, 4 on day 3, etc. down to 1). I'm seeing the doctor next Wednesday anyway, so I'll see how high this takes me (hopefully not too high!).

Incidentally, this crash was completely caused by the stress I induced by taking sugar and flour out of my diet cold turkey. Whoops! If I had realized I'd be causing a crash, I sure would have waited for my bleeding to finish. I'll be sure to do the sugar removal again right after this bleeding stops (I added some in yesterday to stop the withdrawal stress). My count will probably be sky high from the steroids + promacta at that point, so it will handle the stress much better. Live and learn!

I love doctors that cooperate! They are hard to find. I'm glad you have a good plan.

My mom's in the hospital again and I've had fights with two different doctors. The first one, ER doctor, didn't want to admit her. I pushed and it's funny but the on floor doctors have kept her so far for four days to complete a course of IV antibiotics. The need was there. The ER doctor was weird....kissing my mom on the cheek and forehead and rubbing her arms. I was ready to make a Harold and Maude reference but kept my mouth shut. The second doctor, a cardiologist, scheduled her for a Nuclear Stress Test. I've told this doctor 'no' two times before. It's too invasive and risky and there is nothing we can do about the results anyway. She wouldn't survive any surgical procedures....too frail and old.

Good job being an excellent advocate for your Mom. The medical system has just gotten terrible. I hopeyour Mom has a speedy recovery.
Keep up the good work and stay well!

Hi momto3boys,
Sorry to hear about the platelets going down. You get blood blisters at 20,000. Mine wait till 5,000 or less.

Good point about the stress food or lack there of can put on our bodies and blood.

Did he say why he did the methylprednisolone pack vs just prednisone. The methylprednisolone pack is what my hemo recommended instead of prenisone to get over this cycling of crahes after the IVIG/Dex bursts while the Promacta kicks in.

Good luck with your counts Wednesday!

:> Cindy

Cindy1 wrote:

Hi momto3boys,
Sorry to hear about the platelets going down. You get blood blisters at 20,000. Mine wait till 5,000 or less.

Good point about the stress food or lack there of can put on our bodies and blood.

Did he say why he did the methylprednisolone pack vs just prednisone. The methylprednisolone pack is what my hemo recommended instead of prenisone to get over this cycling of crahes after the IVIG/Dex bursts while the Promacta kicks in.

Good luck with your counts Wednesday!

:> Cindy

The blood blisters were tiny, and not the big, honking yucky ones that I have gotten at much lower counts. Kinda like little babies that tell me things have gotten low

Regarding the solumedrol pack, it is just really easy for him to prescribe and pretty much exactly the amounts I happen to need to spike counts up a bit (but not a ton). Each methylprednisolone pill is 4mg. From what I understand this is about equivalent to 5mg of prednisone. So the dosage on day 1 is 6 pills, or 24mg methylprednisolone which is about equal to 30mg prednisone. Each subsequent day decreases from the spike by 1 pill. Perfect for my current needs and very easy for him to prescribe since it's "all in one" at the pharmacy and no pill counting.

So just a convenient method of dosing. Not what you would need if you are contemplating prednisone/mid-level corticosteroids as a longer treatment for an acute ITP patient trying to trigger a remission. It is literally a quick spike over only 6 days.

That said, even though it's only the equivalent of 30, I'm feeling the manic effects already. Yuck. But my bleeding is tapering off already as well (yes!) which was the whole point of this pain. Boy do I love my Promacta with none of these crap steroid side effects! Trying to sleep tonight should be fun, lol. Watch for my 3AM posting

Sandi wrote:

I love doctors that cooperate! They are hard to find. I'm glad you have a good plan.

My mom's in the hospital again and I've had fights with two different doctors. The first one, ER doctor, didn't want to admit her. I pushed and it's funny but the on floor doctors have kept her so far for four days to complete a course of IV antibiotics. The need was there. The ER doctor was weird....kissing my mom on the cheek and forehead and rubbing her arms. I was ready to make a Harold and Maude reference but kept my mouth shut. The second doctor, a cardiologist, scheduled her for a Nuclear Stress Test. I've told this doctor 'no' two times before. It's too invasive and risky and there is nothing we can do about the results anyway. She wouldn't survive any surgical procedures....too frail and old.

Thanks Sandi. I really do love my new doctor! He's so thorough.
That is terrible about your mom. Hospitals can be such a mixed bag with doctors, ugh! Creepy with the guy in the ER (good thing he was just the ER doctor and didn't see her long term). You have to watch them like hawks about everything too. They are itching to run tests or just almost find a reason to keep you there.

Recently my youngest son ended up with an epidural hematoma (a big one!) after a head to head collision with another (larger) child in a gymnastics class. He was admitted to the hospital after they saw the results of the CT Scan, though thankfully he never lost consciousness, and never demonstrated any neurological effects at all (we were lucky!) Some of those doctors were a doozy, however. I couldn't sleep at all the first night, because they had to do neurological checks every hour with finger squeezes, tongue wiggles, and questions to ascertain cognitive level. A nice idea, of course, but waking up a deeply sleeping 11 year old every hour and getting him awake enough to ask questions is a herculean task. The doctor was younger with no children and threatened me that she was taking him for surgery after the first check when the nurse only gently tapped him to try to wake him up (and failed). After I dragged him out of bed and spent 20 minutes waking him from a deep sleep, he passed the neruo check fine. The doctor then proceeded to lecture my son on how being stubborn wasn't going to help him and how important these checks were. She also threatened him that they would take him to surgery if he didn't cooperate. The poor kid was in a deep sleep and not being defiant or stubborn, he was pretty surprised by her lecture. It was really insane, but I had to wonder what they would have done to my child if I hadn't been there to manage things.

Even when everything came back fine time and time again, they took another two days to release us. I always call getting out of the hospital breaking out of jail because it's like they just keep trying to find things to do and only release you when they can't think of another possible thing. Probably gets back to liability, but it's so frustrating. I hope that you can manage your health as well while your mom is in the hospital. It's so hard on the caregivers too! Lack of sleep doesn't really keep us in the best shape for making decisions. After his recent stay, my son was amazed that anyone manages to get better in a hospital with all of the sleep interruption going on. He was so happy to get home and get a good night's sleep, lol! Not a fun environment for anyone!

I think I would have been hard to wake up too....that's annoying even though I understand the reason. My mom swats at nurses when they try to wake her up. She gets mean and nasty. At least your son kept his manners! Nasty doctor had no right to yell at the poor kid. Threatening surgery for not being cooperative is a bit extreme.

No kidding. I didn't sleep the whole night in terror that I wouldn't wake up (I sleep deeply too!) for a check and they would haul my son away! I don't blame your mom. Anyone in a deep sleep can't be fully answerable for what they might do when not all the way conscious. I hope they aren't doing too many night checks. May you both break out of jail quickly!

11/1/17 plt 144,000
50mg Promacta daily

Well, I finished the solumedrol pack (and I was actually a little bit naughty and skipped over one of the doses... I went 6, 5, 3, 2, 1 on the taper and skipped the day with 4 pills and jumped to 3 because it was making me crazy. My bleeding had stopped by that point, so I made an executive decision). That's a higher count that I was ever getting with just the steroids in my final try with prednisone before moving to eltrombopag. Probably more effective with the combination.

I saw my doctor yesterday as well, and we talked about overall effectiveness of my treatment. He was a little bit interested in trying to maybe go up to 75mg, probably because this recent crash was in his mind, but I talked him right down from that. I'm not doing 75mg again if I have counts in the 40s in general. He's good with that too, thankfully. He gave me a prescription to try tranexamic acid (Lysteda) to manage the monthly cycle. Since the only time I need any kind of rescues are with runaway periods, this sounds like something to try. I'll be taking the medication when the bleeding starts and for 5 days to see how that might help things.

I'm up for my pneumonia vaccine and he recommended the prevnar13 for that (apparently better than the regular one and recommended for immunosuppressed people, which I will always be considered because of my lack of a spleen). I'm also going to be getting a flu shot.

We talked about dental work, and I'm going to go for a long overdue cleaning (gotta put that count over 100 to good use). I will be doing a single dose of prophylactic antibiotics (being asplenic means prophylactic antibiotics for any dental stuff).

Nothing much else going on. I'll be seeing him again in 3 months to check in with current treatments.

The drs have a short memory and good job talking him into staying at 50. I 'm glad things are improved! 144,000.
So I am at 582...don't ask how it got that high.
I did not take Promacta last night per the prescribing information protocol.
Getting teeth cleaned is such a luxury! Glad you can get it done.
I'll email my dr and get his input.

Holy smokes m23b, 144.
This steroid experiment has been a really interesting. AFAIK Promacta and steroids combined is a 'multiplicative' effect, and not an 'additive' or linear one. Having a multiplicative effect explains how really high counts, like 1000, happen.

Would you agree? If you were to do this again you'd go with about half the total amount of steroids?

I wonder a bit about a wider affect than just today's counts. I wonder if you'll gain some sensitivity to Promacta in the near term. A synergistic effect.

Cindy1 wrote:

The drs have a short memory and good job talking him into staying at 50. I 'm glad things are improved! 144,000.
So I am at 582...don't ask how it got that high.
I did not take Promacta last night per the prescribing information protocol.
Getting teeth cleaned is such a luxury! Glad you can get it done.
I'll email my dr and get his input.

Lol, I didn't have to do much talking. My new hematologist is really awesome and presents everything as a suggestion for discussion. No "we will do this next," type stuff from him AT ALL. He is so great, after so many years of bad ones it's such a relief to get a good one!

Good luck paring down with some of your treatments and getting some stability. I find myself wondering if IVIg isn't acting kind of like an "irritant" for your immune system. It serves the purpose of getting your counts up in the short term, but then precipitates huge crashes on the back end. It whets your system's appetite for platelet eating! The up and down is definitely no fun for you, so I hope you can find a way to maybe just use the steroids without the IVIg to see if you can get more stability from those.

Hal9000 wrote:

Holy smokes m23b, 144.
This steroid experiment has been a really interesting. AFAIK Promacta and steroids combined is a 'multiplicative' effect, and not an 'additive' or linear one. Having a multiplicative effect explains how really high counts, like 1000, happen.

Would you agree? If you were to do this again you'd go with about half the total amount of steroids?

I wonder a bit about a wider affect than just today's counts. I wonder if you'll gain some sensitivity to Promacta in the near term. A synergistic effect.

Definitely a higher number than I was getting with the steroids alone prior to starting Promacta. I do have to say, though, that when trying the steroids that final time my hematologist kept me on a consistent dose (80 or 60 or something like that), which is not how I used them throughout my life as "mini-rescues" off the books. I always just took a pill or two to spike things up, and then my symptoms would disappear and I would settle out at whatever my usual number was (40-60) without symptoms. If the goal is stability, of course, a treatment of random rescue spikes is probably not the best idea, but it got me through many years!

My guess, because I definitely have responsiveness to steroids, is that I have both platelet destruction and production issues. My feeling is that my destruction ratio is higher than my production deficit, because my Promacta response is not extreme. It takes 50mg to get me to the 40s, which is quite different from someone who takes 12.5mg every third day and shoots up with a count over 100. Because I am relatively responsive to steroids (they gave me safe counts pre-Promacta, but just produced a quality of life that wasn't sustainable!), I believe that destruction is the larger portion of my issue personally (maybe 75% destruction versus 25% production deficit). Prior to having my splenectomy, I recall them doing a test by injecting me with radioactive/tagged platelets (we found a friend with my blood type to donate them) and determining that the platelets ended up in my spleen. Since I no longer have a spleen, I would imagine that my body adjusted by now having my liver destroy them (or my lungs possibly - that was a crazy article about lung destruction recently!) or some other part of my body.

Just thinking out loud a bit. Regarding your question about steroid use in the future, I would probably do the same thing that I just did. When you have active bleeding, you want it to stop pronto, so I'm not inclined to mess around with titrating to find the perfect amount that is just enough to stop the bleeding. Going up to 144 isn't too bad (if I had shot up to 300 or something, then I'd be panicky and definitely would decrease the dosage next time), and it got me through the episode. In my time on Promacta, this is the first rescue I've needed, so I call that a big win. Maybe the tranexamic acid will be able to further prevent those "perfect storm" conditions of a crash coinciding with active bleeding. If I have a crash and no active bleeding, I will wait it out because my body usually creeps back up to safety on its own.

Over my next few counts we can all see if my Promacta "set point" has shifted any post-steroid burst. I'm quite curious as well My speculation (because of my seeming leaning towards destruction of platelets) is that once my immune system is going at its regular rhythm, I'll be back in the 40s. Which is just fine by me, because quality of life on Promacta is just great in my case!

That is soooooo wonderful you are finally with a good doctor that is reasonable and believes in team work.

I agree for me I think the IVIG was a bad bandaid causing the rebound platelet crashes. But today day 18 of cycle I was 476,000. Down 100,00 since Wednesday. Hopefully with the continued Prednisone and homeopathics I will keep the numbers up and get over this without platelets dropping again. The homeopathic today did testing with his Avitar electromagnetic machine and it shows my adrenals have gotten weaker since last month...what a surprise. His testing showed that I should wean Prednisone as follows: weaning down to 10 for 2 days then 7.5 for 2 days, etc till about 3 then he said stay on that about a month. Longer then I had anticipated but I get it.
The homeopath is going to call my hemo dr to discuss the homeopathic findings and Promacta dosing. So at least they can work together to get things straightened out.

For now, off Promacta until at least after my Monday platelet blood test,

Going for a much needed long weekend to the mountains.
Have a good weekend everyone!
Thank you,
Cindy

momto3boys wrote:

... It takes 50mg [Promacta] to get me to the 40s, which is quite different from someone who takes 12.5mg every third day and shoots up with a count over 100...

Hmmmm, I wonder if you are exaggerating about that

When you mention a production issue I suspect you mean GPIIb-IIIa (row 1) antibodies attacking megakaryocytes and thus reducing production - as opposed to a TPO antibody (row 3) reducing production? If so, sounds reasonable. Having a reduced steroid response would make sense given a reduced number of platelets available.

About splenectomies. I would think that if the liver takes over destruction one would lose (in some proportion) IVIG response and maybe steroid response too. Losing IVIG or steroid response, I think you would agree, is by no means rare around here. But I don't think the liver taking over immediately is necessarily what happens when a splenectomy fails. My own belief is that the platelet (or TPO) destruction just becomes distributed throughout the entire circulatory system when a splenectomy fails. My evidence for this would be that I don't recall reading of someone who lost response to a treatment after a splenectomy failure. If anything, some seem to become a little more sensitive to treatments.

About the 'set point'. So the reason I am wondering about a possible increased Promacta sensitivity is just what you mentioned - a liver issue. That is, a GPIb-IX antibody, or row 2, issue. It seems as though people with only this antibody eventually go into remission after taking Promacta for awhile. Further, combining Promacta with steroids might be able to speed the time to remission. This combination is exactly what you did for a few days. I wonder if 50 mg of Promacta will now put your set point closer to 100 for awhile.

The clue for me of row 2 antibodies contributing to your count response is because of things you've mentioned in the past. Please correct me if I get something wrong here. A declining/declined steroid response when Promacta was started. Promacta dose started at 75 mg - which seems too high for row 1 alone. Then over time Promacta dose reduced to 50 mg. I wonder if row 2 antibodies are in check/balance when 50 mg works and are not in check/balance when 75 mg is needed. Just a guess...

Oh BTW. I stumbled across this study where they combined a (china developed) human TPO agonist with Rituxan. If I skimmed through it right, they had some improvement in response rate but no improvement in lengths of remissions. I wonder if the improvements occurred because some had both row 1 and row 2 antibodies going into the combined treatment.

Hal9000 wrote:

When you mention a production issue I suspect you mean GPIIb-IIIa (row 1) antibodies attacking megakaryocytes and thus reducing production - as opposed to a TPO antibody (row 3) reducing production?

I'm talking about it more from the understanding that people with ITP were traditionally believed to have only problems with destruction of platelets. They then discovered that people with ITP also would manifest decreased platelet production in the first place, which is why TPO-RAs were able to help. I don't have the understanding from reading research (I don't read a ton, lol!) whether that production deficit is antibodies attacking megakaryocytes (and which antibodies those might be) or for another reason. I just thought I understood that there can be problems on the production end.

Hal9000 wrote:

About splenectomies. I would think that if the liver takes over destruction one would lose (in some proportion) IVIG response and maybe steroid response too. Losing IVIG or steroid response, I think you would agree, is by no means rare around here. But I don't think the liver taking over immediately is necessarily what happens when a splenectomy fails. My own belief is that the platelet (or TPO) destruction just becomes distributed throughout the entire circulatory system when a splenectomy fails. My evidence for this would be that I don't recall reading of someone who lost response to a treatment after a splenectomy failure. If anything, some seem to become a little more sensitive to treatments.

This sounds reasonable. I haven't read much about post-splenectomy treatment here, maybe because splenectomies aren't quite the go-to that they once were. Perhaps back in the archives you have read more about other failed splenectomies.

Hal9000 wrote:

About the 'set point'. So the reason I am wondering about a possible increased Promacta sensitivity is just what you mentioned - a liver issue. That is, a GPIb-IX antibody, or row 2, issue. It seems as though people with only this antibody eventually go into remission after taking Promacta for awhile. Further, combining Promacta with steroids might be able to speed the time to remission. This combination is exactly what you did for a few days. I wonder if 50 mg of Promacta will now put your set point closer to 100 for awhile.

We shall see

Hal9000 wrote:

The clue for me of row 2 antibodies contributing to your count response is because of things you've mentioned in the past. Please correct me if I get something wrong here. A declining/declined steroid response when Promacta was started. Promacta dose started at 75 mg - which seems too high for row 1 alone. Then over time Promacta dose reduced to 50 mg. I wonder if row 2 antibodies are in check/balance when 50 mg works and are not in check/balance when 75 mg is needed. Just a guess...

I certainly don't expect you to remember my history I actually don't have a lot of data about what my counts would do when I did steroid spikes in the past. Lots of times I didn't even have a hematologist, and just roved around with my little backup stash of prednisone which I only used when I would have problems with bleeding (not often). Taking a few pills would stop my bleeding issue and that was good enough for me. What my counts may have been doing at the time is anyone's guess. I only treated symptoms most of my life.

It was only when I got a full-time hematologist a few years ago that I have any idea about what was going on. Sometimes I think I shouldn't have poked the hornets' nest by getting a doctor that felt the need to "manage" me... I could have perhaps gone more years doing the same steroid spikes... I hadn't been on weeks of steroids in forever, so those results may have been comparable with what I always had. It's only the horrible side effects of continuous steroids that made me quit them and switch to promacta, not really a responsiveness "problem."

My promacta was actually started at 50mg as per protocol, but I didn't get any response until we increased my dose to 75mg after about a month (I will have to go back and read myself, my memory is terrible, lol). My counts were all over the place on 75, and then I remember experimenting with patterns of 75 and 50 alternation. At one point I felt like I was having vision side effects from being on 75, as well as periodic counts that were too high for me (I'm paranoid), so I told them no, I was doing 50 only from that point forward. The end. Actually staying at the same dosage for so many months now seems to have done well for me. Far more stability than I was having on any of the alternating doses/75 combos. I guess we won't know what would happen if I were to go back on 75, because I won't do it without a REALLY compelling reason to. Counts in the 40s are just fine by me

Thanks for your thoughts. We'll have to see how your danazol experiment goes. Keep us posted.

Hi momto3boys,

How are things going with the platelets?
Thanks for sharing your story and info, once again very helpful!
In regards to Promacta and Prednisone. I am on that journey right now and am not sure best weaning schedule. 3 drs 3 diff opinions plus one from a pharmacist. And not sure how to proceed with the Promacta. The protocol says go down to 50 once I get to 150 platelets. My hemo says I should have restarted up on the 75mg. after a 3 day hold.
I'd love everyones thoughts
My Promacta/Steroid story:
6 dex bursts since May 2017
New treatment plan was I went on prednisone on Oct 27 to see if I could stop the every a 14-24 day rebound platelet crash post rescue IVIG and dex bursts for low platelets that I have had since my ITP was diagnosed in May 2017.
Started Promacta 50mg on 8/6 but still cycled down to 4,000.
Went to 75mg Promacta on 9/22.
Last crash on 10/16. But on 11/3/17 had 582,000 platelet count so stopped Promacta and have just had one 50mg Promacta pill yesterday because I don't want to crash but Platelets were 333 yesterday so I am not taking Promacta today. Maybe tomorrow.
Possibly good news is Monday was day 21 of post IVIG with platelets of 333.

Now trying to sensibly wean off prednisone and not get a platelet crash. This is my new thought...go down 2.5 every 4 days then go down 2.5 for four days. The hematologist told me to stop cold turkey last week after the 582,000 the gp said go down 2.5 mg every week (felt too slow) the homeopathic said every 2 days lower 2.5 felt too fast,
Oct 27-Nov 2: Started Prednisone 15mg October 27 took for 1 week
November 3: took - 12.5mg 1 day
Nov 5-7: too10 mg prednisone- day 5 of it

Promacta:
Take 50mg once platelets get down to 250,000???
Thanks,
Cindy

I forgot to say, maybe some of the homeopathics are kicking in too. I feel like maybe we are making progress in my body and I want to try and keep things going in the right direction.
Maybe if I get down to 5,000 platelets again, I just try and ride it out? Maybe like I think you said take a couple of days of prednisone? Did you say you take 2 days of 60mg? Even if I have mouth blood blisters and streaks of blood in nasal mucous? I am thinking IVIG causing havoc.
Thoughts?

Cindy1 wrote:

Hi momto3boys,

How are things going with the platelets?

I only get counts every two or three weeks, so you won't see my update on my thread here until next week at the earliest, lol! I got my dental cleaning done though, so there is some excitement!

Cindy1 wrote:

In regards to Promacta and Prednisone. I am on that journey right now and am not sure best weaning schedule. 3 drs 3 diff opinions plus one from a pharmacist. And not sure how to proceed with the Promacta. The protocol says go down to 50 once I get to 150 platelets. My hemo says I should have restarted up on the 75mg. after a 3 day hold.

Just to be perfectly clear Cindy, I am definitely not on a Promacta and Prednisone journey I have been taking Promacta for the last year and a half or so EXCLUSIVELY. No Dex, no IVIg, no Prednisone, etc. I did a single burst of methylprednisolone (the solumedrol pack) to stop bleeding the week before last. That was actually the first "rescue" treatment I've needed since being on Promacta, and I wouldn't have done it unless I had active bleeding. It was not part of my "treatment plan" and was only to try to stop bleeding, since I am responsive to steroids.

Your situation is very different because you have 3 doctors treating you in 3 different ways. Prednisone with your GP, Dex/IVIg/Promacta with your hematologist, and other things with your naturopath.

Regarding what to do about your promacta, I don't have any advice. Following the protocol to me seems like something to evaluate when you are just using promacta. You are throwing steroids in the mix now, so I don't think there is clear guidance on mixing steroids and promacta. Stopping the medication at high counts really implies that you got the high counts from just taking the medication I would think. You have no idea what your counts would be if you were just using promacta. Throwing other treatments in the mix will mask the effects of any single treatment.

Regarding what to do with low counts (mouth blisters and blood streaks in nasal mucous), that is a decision for you and your doctor (doctors?). I have no idea what I would do in your position, because you don't have any idea what's working. It is at least seeming like you are responsive to steroids, so perhaps using Prednisone for crashes instead of IVIg treatments might be a way of treating the symptoms (mouth blisters) without getting back on the IVIg rollercoaster. Trying to really just give your 75mg of Promacta a chance without other treatments might be a good idea (once your numbers get out of the high levels they are at now from steroid treatments). I would say work together with your hematologist, but, unfortunately in your case, the hematologist's advice has been very bad thus far.

No real insight other than to try to get out of the multiple simultaneous treatments mode. Regarding steroid tapering, other experts on here who have dealt with the benefits of nice, sloooow tapering gave you some good advice on that front.

My two cents.....what she said ^^^^.

Thanks for your 2 cents

Thanks for your thoughts.
To clarify...if you had blood blisters and blood streaked nasal mucous but no active bleeding at 3,000 platelets you would hold tight and not do any rescue meds? Maybe that is what I need to do next. I am terrified of an intercranial bleed.

Regarding what to do about your promacta, I don't have any advice. Following the protocol to me seems like something to evaluate when you are just using promacta. You are throwing steroids in the mix now, so I don't think there is clear guidance on mixing steroids and promacta. Stopping the medication at high counts really implies that you got the high counts from just taking the medication (What me were you referring to Promaccta or Prednisone?
I wrote to the Mayo dr to see if he wanted to weigh in since I don't trust my hemo.

Thanks!

Cindy:

I don't think that anyone here would ever tell you to ride out symptoms that you are not comfortable with. We all have to reach our own comfort zones. I think that only comes in time when you've had those symptoms and have been okay. I won't tell you that I wasn't afraid of low counts when I was first diagnosed. I was. I calmed down by taking my cue from my doctor who didn't seem very concerned. Of course he wanted me to treat, but he never pushed IVIG or platelet transfusions. I've never had either of them. My worst symptoms were horrible large, black bruises, petechiae, purpura, bleeding gums and heavy periods. My lowest count was 3k. After I hit bottom a few times, I got used to it and the fear wasn't as bad. I got to a point where I wouldn't treat until I hit 10k or 15k, but I also knew that I would respond to Prednisone fairly quickly. It took about 8 weeks after diagnosis to discover that though because he tried two other treatments first (they didn't work). Everyone is different as far as symptoms and counts go. If any of us are okay with counts below 5k, that does not mean that you have to be. It would be irresponsible to tell you not to treat when you have symptoms that scare you. I think what we are saying is that it would be best to actually find out what you do respond to instead of having multiple treatments thrown at you that cause such huge jumps and falls. What you are doing now is okay and makes sense, but it will be a delicate balance from this point to try to get you stable.

One more thing to clarify: There is a difference between riding out low counts and riding out symptoms. Many of us have ridden out low counts, but few will ride out symptoms that we are not comfortable with. I've said many times that low counts do not equal a medical emergency, but symptoms can be. Only you can decide what you are able to tolerate. If you feel like you are afraid to go to sleep at night because of symptoms, do not believe that you have to be brave and tough it out. No one is judging you. Having symptoms does not mean that you will have a brain bleed; that is a very rare thing. However, we can't pretend that it never happens....it does. I think the percentage is something like .0067%.

You can't always predict counts by the symptoms. I used to think I could, but was surprised a few times. I once had horrible purpura with counts of 50k. I went in for a count that day thinking I had to be low because I had purple splotches all over my chest. Counts were a safe level and I had no explanation for it. It faded by the next day. I've also had counts below 10k with no symptoms at all and also had times with symptoms at those counts. It's the symptoms, not the numbers, that matter the most.

Cindy1 wrote:

Thanks for your thoughts.
To clarify...if you had blood blisters and blood streaked nasal mucous but no active bleeding at 3,000 platelets you would hold tight and not do any rescue meds? Maybe that is what I need to do next. I am terrified of an intercranial bleed.

Definitely no one would presume to tell you what to feel! If you are terrified at low counts then you need to treat in some way for your sanity. I totally get it. I am in a panic mode when my counts are too high. That's just me, but I have to work with myself and my own reactions (rational or not) as do we all. Do what feels best for you!

Cindy1 wrote:

I wrote to the Mayo dr to see if he wanted to weigh in since I don't trust my hemo.

Excellent idea! I don't trust your hemo at all either because of the mess he is making with all of the treatments. Since you made your trip to the Mayo clinic and you are officially in their system, use it! You are their patient too, and they can give you better medical advice. Hopefully they will be helpful in your current situation. Keep us posted.

Haven't heard back from Mayo yet. Platelets today were 232. Down 50 a day. I took 50mg Promacta today and will take Promacta every day. (not yet sure of dose.) Weaned down to 7.5 Prednisone today will take that for 5 days then down .5, etc unless Mayo has a better idea. Day 23 since rescue meds.

The protocol says this
A platelet count of ≥200 x 109/L to ≤400 x 109/L :-
Decrease the daily dose by 25 mg. Wait 2 weeks to assess the effects of this and any subsequent dose adjustments.
For patients taking 25 mg once daily, decrease the dose to 12.5 mg once daily.
Remember target count is 50 when on TPOs. However if your count drops alarmingly when you cut doses maybe alternating 25mg/50mg could be the answer.

Now you have reached the physiological dose with your Pred you need to slow the taper down to a 1mg drop each month. You really ought to stay on 7.5mg a day for at least 2 weeks before considering a further drop to 7mg for the following fortnight,