TOPIC:

Hello everyone,

Firstly, a big thank you to everyone who came before my wife and I. By sharing your stories, you share hope to those who are going through a time of great anxiety and uncertainty.

In January, my wife noticed new bruising and dismissed it. After hurting her leg at a water park, my wife (38) was forced to go to the doctor, needing an MRI. During the visit, the unusual bruising was disclosed. A blood test was ordered. Within a matter of minutes, we were called back to our physician's office - an experience that still haunts me. More blood tests were ordered as they screened for every other condition under the sun.

A couple of blood tests later (Platelets 18K, 21K, and 19K), and a after few sleepless nights, ITP was the diagnosis. My wife was started on 40 MG of Dexamethasone for four days (ending last night). We will be going back for blood tests each Thursday from now until the end of May.

I keep replaying the last few months over in my head wondering what could have caused it. We had a child in 2016, my wife went off and on Birth Control Pills for the subsequent year-and-a-half. Her work was uncommonly stressful, working late hours through the fall and winter of 2018. I think we may never know the cause.

We are new to this process, and my wife is not a worrier, but I am. I wonder - at this stage, what questions should we be asking our hematologist and/or our Physician? Any advice you would give somebody starting out on this journey? What knowledge or insight helps to get us through the anxiety of the situation?

Thank you in advance, you've already helped more than you could know.
Tommy

One more sub-series of questions: As platelet levels rise and fall, are there symptoms to watch out for?

For example, since the Dex. treatment, the color returned to my wife's face - which is good. However, she has had bouts of both fatigue and hyperactivity (while are likely caused by the Dex.). She has had headaches - especially the last day or so, but the bruises are clearing. It's hard not to read something into everything.

Finally, is it common that at this stage, you eventually learn it's not ITP, but something else? I guess our initial fear of a cancer of some type (which hit us when we first got the call to doctor's office following the very first blood test) still lingers in the back of my mind. The Hematologist and physician seem very confident in an ITP diagnosis and reassured us that the issue is platelet only.

Just trying to learn how to properly read the situation.
Thanks,
Tommy

Hi Tommy. Yes, ITP has a big impact on one's life. It takes awhile not to be emotionally overcome by it. Just have to give it some time. Figure out, shall I say, the ITP game.

thomasjohnwood wrote:

... My wife was started on 40 MG of Dexamethasone for four days (ending last night)...

It's been awhile but I think the 4th and 5th nights were the worse for me. Can't sleep mainly. It should get progressively easier after that.

...I keep replaying the last few months over in my head wondering what could have caused it. We had a child in 2016, my wife went off and on Birth Control Pills for the subsequent year-and-a-half. Her work was uncommonly stressful, working late hours through the fall and winter of 2018. I think we may never know the cause.

Stress? Based on that report alone (very limited info), Epstein Barr virus aka mononucleosis is a possibility. If so, counts would be expected to respond to the Dex treatments.

...We are new to this process, and my wife is not a worrier, but I am. I wonder - at this stage, what questions should we be asking our hematologist and/or our Physician? Any advice you would give somebody starting out on this journey? What knowledge or insight helps to get us through the anxiety of the situation?...

A few folks have problems finding a doctor they can work with. I got lucky, so it's hard for me to recommend anything specific.

When platelets are low symptoms are pretty unique to each person. Have to figure it out along the way.

Most folks that arrive here have already received a diagnosis of ITP and it is an accurate diagnosis.

Good luck with Dex.

Hi Thomasjohnwood! I’ve been meaning to post a response here, but I’ve had a pretty crazy week!

Firstly, I’m sorry you guys are dealing with this diagnosis! The beginning was a horrible time in my life, and I’ve only recently been diagnosed (Dec 2018). I don’t have a lot of answers but being a part of this forum has helped tremendously and I thank the few people who have taken time out of their day to send me their thoughts and experiences! What I wish I knew when first being diagnosed is that there will be ups and downs...lots of them. It was easy to get caught up in feeling elated when my levels were rising, only to get devastated when I would bottom out and get sent to the hospital. I know everyone is different, but if you prepare yourself for the fluctuations and listen to your body, it should make it a much smoother ride! Your wife’s symptoms are probably something very specific to her, as we all present different things at different levels. For example, I’ve been at 1K platelets with only a few petechiae on my hands and legs along with fatigue while someone else at that level would be having nosebleeds, etc....she will have to listen to her body. I have noticed the more symptoms I get, the more likely it is that I am low again! As far as questions to ask your hematologist, the PDSA home page has a pretty good list of questions for your doctor! You can try to ask if they have a suspicion as to why your wife got the ITP, but from what I gather, it is hard to pin down a specific event! I do think if they ran the gamut of tests that they usually do when they found the low platelets, the ITP diagnosis is pretty accurate. Anyways, I hope this helps even a little bit, good luck to you and your wife!

Quick update:

We began High Dose Dexamethasone (4 days, 40 MG) on Friday of Last Week. On Thursday (day 6 since beginning of treatment), we had our first follow-up blood count. Today, we learned Jill's platelet levels are at 165k. We were informed that getting up over 90k within the first week of treatment is a good sign (indicating her version of ITP is likely steroid responsive - which increases likelihood of remission).

While part of me knows that this is a positive sign, we know that by no means are we out of the woods. Bruising is clearing up and energy level has returned. Some of our anxiety about other conditions are beginning to fade - as response to the steroid is a strong indicator that it is an autoimmune response causing the low platelets.

We have blood tests scheduled each week over the next month. I'll continue to post the results - so that those who begin their ITP journey understand one of the many paths it can go down.

Thanks again to everyone who has posted or replied - it's nice knowing you're not alone.
Take care,
Tommy

So we went for blood work today, and she is down to 13k. She is so worried. She is on her menstrual cycle, but to drop from 165k to 13k in a week is pretty discouraging.

Unfortunately counts can swing dramatically with ITP. Don't get disheartened.

Sorry to hear that Tommy! Of course she is worried bless her heart [know you are too] but there is life with ITP. I was diagnosed in 1989 and a couple months later we moved to Tokyo. Before we left my MD getting advice from a hematologist wanted me off prednisone so they dropped the dose from 60mg to 30mg and my count hit the gutter so we moved with me on 60mg of prednisone.

I was interested to see how Jill's count did after the Dex as that was mentioned by my new hematologist if my count should go down drastically again. Is her hematologist going to ride this out for a bit to see if her count comes back up?

Hang in there!

Our hematologist is going to wait a week and re-test before deciding to advance treatment. Considering Rituximab - but wants to see if the dip was invoked by her period (which appears to possibly be a pattern), and/or to see if platelets return to approx 20k - which appears to be her baseline.

Is such quick drops in platelets common with ITP? Are these inherently dangerous or a sign of something bigger and scarier than ITP? That's our biggest fear - as we are new to ITP in general.

Thanks again - just knowing there are others in our situation helps alot!

thomasjohnwood wrote:

...
Is such quick drops in platelets common with ITP?

Yes. At least for about two thirds of us. Sounds like she was able to get through the first pulse ok. What would really be encouraging would be a gradual increase in count response for each subsequent Dex pulse.

Are these inherently dangerous or a sign of something bigger and scarier than ITP? That's our biggest fear - as we are new to ITP in general...

There is no direct correlation between ITP and any other disease that I know of. One weak statement one could make is that having ITP may be an indicator, eventually, of having some other auto immune disease. But in no sense is that a given. Having said that, there does seem to be a small fraction of steroid responders on this forum that end up with Lupus. As a counter balance. Be sure to educate one's self on the possibilities of CRISPR solving many diseases, potentially ITP and Lupus, in the not too distant future.
"CRISPR: The gene-editing tool revolutionizing biomedical research"
www.cbs.com/shows/60_minutes/video/dIdyXroziO4KUSRu_98VLALNMxtt7cXg/crispr-the-gene-editing-tool-revolutionizing-biomedical-research/

Cheers to stealing all the genetic solutions bacteria has found (eg CRISPR) to defend itself against invading viruses.

We went for my wife's weekly platelet count. So far, they have been as follows:

Week 0 - Diagnosis: 18K
Week 1 - Pre-Treatment: 19K
Week 2 - Treatment (4 doses of Dexamethasone): 165K
Week 3 - No Treatment (Menses): 13K
Week 4 - No Treatment: 30K

The results since treatment have been somewhat encouraging in spite of the low platelet levels. Energy levels are way up, immune system seems more resilient. Bruising is significantly reduced. Hematologist has postponed further treatment temporarily to allow for more monitoring.

We have a Hematologist appointment on Monday, May 13th - I'll share more following.

Thanks,
Tommy

Right on the borderline of treatment with that 30. Fingers crossed.

Meeting with the Hematologist went well.

Because there is no visible bruising and no bleeding events, we are going to do two more rounds of Dexamethasone spaced one month apart each and will continue to monitor with weekly blood tests.

If that treatment doesn't inspire remission, then Rituximab will be the next course of treatment - which would begin in July and run through the summer.

My wife and I suspect a bit of a pattern. Her bruising seems to follow with her menstrual cycle. Her platelet counts tends to be lowest (and bruising highest) just a few days before her period - with bruising clearing and counts peaking about 10-12 days following.

However, because of a lack of corroborating evidence, the Hematologist is skeptical of CTP at this point in time. The hematologist also mentioned that with CTP, platelet count rebounds tend to exceed the "normal" limits of platelet levels, while my wife's appeared to peak at about 155k. Also, the only blood test confirmed rebound to date followed round 1 of dexamethasone - and is likely attributable to that, not fluxuations in hormones.

I wonder if the longer term monitoring will show a pattern - it is probably all in our head.

LOL, I think I've talked myself into improving counts, where none materialized, more than a few times.

Sounds like a game plan. I've only done one Dex pulse but I can see how several of them in a row could get old real fast. After the second pulse, she'll probably know the side effects like the front and back of her hand and dread the third pulse with a passion.

Week 0 - Diagnosis: 18K
Week 1 - Pre-Treatment: 19K
Week 2 - Treatment (4 doses of Dexamethasone): 165K
Week 3 - No Treatment (Menses): 13K
Week 4 - No Treatment: 30K
Week 5 - No Treatment: 64K

We will be starting a second pulse of high-dose Dexamethasone today (four days). Jill's anxiety around the whole situation has mostly cleared-up - viewing ITP as more of an inconvenience than a death sentence. Energy is still up. We had noticed a pattern in the past of platelets crashing a week before menses - which will be a few days after finishing Dexamethasone this round - so it will be interesting to see what happens.

Week 3 - No Treatment (Menses): 13K
Week 4 - No Treatment: 30K
Week 5 - No Treatment: 64K

Personally with a count of 64 I would go for:-
Week 6- No Treatment

Then wait & see what happens on week 7

Nice count. After only one pulse too.
Yes, treatments that give positive results helps one's outlook a lot. That's how Nplate and Promacta are so important to many.

Counts often drop drastically after treatment with Dex. It's a pattern that I've seen over and over. If her counts are still 50+, I'd wait it out as Mrs B said.

Hi everyone,

Back for the weekly update:

Week 0 - Diagnosis: 18K
Week 1 - Pre-Treatment: 19K
Week 2 - Treatment (4 doses of Dexamethasone): 165K
Week 3 - No Treatment (Menses): 13K
Week 4 - No Treatment: 30K
Week 5 - No Treatment: 64K
Week 6 - Treatment (4 doses of Dexamethasone & Menses): 127K

We are about a week removed from the last round of dexamethasone treatment, and the positive effects appear to be lasting longer than they did the first round. No reappearance of bruising or bleeding to date. Also, skin color has maintained (during severe platelet drops, my wife tends to turn pale).

We go for week 7 testing on Thursday. Hoping for the best.

Thanks,
Tommy

That is good news Tommy - but I'm curious as to why Dex was given with a count of 64k.

So am I Mel

So glad to hear your wife's platelets are looking good! And that you aren't so worried about ITP being a death sentence. It becomes for most of us something you have to learn about and manage- also you learn about the medical system and how to manage that too! Will be interesting to see what her next counts are- thanks for sharing your story.

I agree with MrsB and Mel, I don't believe in over-treatment in order to achieve remission, which is what I think the doctor was doing. ? Not sure but thats what I suspect. I don't see any evidence that over-treatment benefits the patient. There is some thinking that monthly dexa pulses have fewer side effects than prednisone, and that there is a higher rate of remission with dexamethasone given monthly for 6 mos. In my case I couldn't tolerate dexamethasone even once, it was the harshest treatment I have ever experienced.

All said, I do hope it works for your wife Thomas. Her counts are going in the right direction, she may have achieved a safe number/ partial remission already. good luck!

Hello everyone,

A bit of context - our Hematologist ordered weekly blood tests every Thursday.

Following the Week 4 test (30k on May 9th), the Hematologist ordered a second round of Dexamethasone to begin on Friday, May 17th which would have been exactly one month since the previous treatment.

We went for our Week 5 blood test on Thursday, May 16th. In our part of Canada, you have to call and get your counts the following day - unless they are in a critical range at which point they will call you immediately after the test. We began the Dexamethasone pulse on the morning of Friday, May 17th - as planned. Because our Hematologist was on vacation, we did not learn about the count of 64K until the evening of May 17th. By that point, we had already began the pulse, and could not reach our Hematologist for advice, so we elected to proceed (as my wife had no ill effects to the treatment).

In week 6 (May 23), we learned that her counts were 127k.

Hope this helps.
Thanks,
Tommy

Hi, Tommy. Where in NB are you?

Hi everyone,

Back for the weekly update:

Week 0 - Diagnosis: 18K
Week 1 - Pre-Treatment: 19K
Week 2 - Treatment (4 doses of Dexamethasone): 165K
Week 3 - No Treatment (Menses): 13K
Week 4 - No Treatment: 30K
Week 5 - No Treatment: 64K
Week 6 - Treatment (4 doses of Dexamethasone & Menses): 127K
Week 7 - No Treatment: 33K

It will be interesting to see if, without treatment, if it will follow the same pattern and rise to 50-60k next week before falling prior to/during menses.

Cindy, we are from. Can be reached at thomasjohnwood@outlook.com. Are you from Canada, if so, what part as well?

At what stage do people grow in confidence that their ITP is not secondary to something that has yet to be diagnosed? We seem to be caught up in a pattern of worrying about secondary ITP every time levels fall - which I am sure will be a long-term thing for some.

Thanks,
Tommy

I'm in NB too; Saint John, Tommy

Oops, second pulse not quite as rosy. Yes, does look to be a possible pattern. Has your doc made comment on this yet?

On counts dropping after treatment. Would that be evidence of secondary ITP? Or, are you just thinking of cyclic ITP? Perhaps this is a terminology thing. When I think of dropping counts after treatment I think of 'chronic' ITP - as opposed to rising counts with 'acute' ITP.

I guess my fear, though there is no symptoms/evidence to support it, is that the ITP is secondary to something that they missed.

It's hard to accept that it's chronic ITP, and not something like Leukemia. However, the Hemo is very confident that there are no signs of abnormalities or cancers in any of the tests conducted.

I understand there is a chance that it might be something like lupus or another immunodiseaze might be identified later in life, but for now it's the boogie man fear of - maybe it's not ITP and secretly something else.

On a side note, my wife appears healthy, no brusing or bleeding, no fatigue or side effects to steroids. She actually seems pretty well adapted to doing a third round - as what seems to be happening is her baseline level rises after each treatment- with the exception of directly before or after menses.

I wondered if you were in Moncton. I had my second opinion done there when I was first diagnosed. Saw a very nice doctor who has since passed away.
I probably should have taken my ITP more seriously than I did, even with low counts. I went about doing whatever I wanted without thinking about it. The first year, I was getting IVIG every week, then tapered down to below a certain count. It helped for about a week or so. The only symptoms I ever had were bruises.

I'm like Cindy but didn't get a second opinion. My only symptom were looking like I had been beaten up in a back alley with a 2x4 - after prednisone took care of that my only symptom was looking like the Pillsbury Dough Boy from the prednisone. Before moving I didn't get BMB results so figured nothing else was involved - in fact rarely thought of there being another reason for having ITP. A couple months after diagnosis we moved from the States to Tokyo with me being on 60mg prednisone and not knowing if I'd even have a hematologist in Tokyo - from there we moved to Hong Kong, where I knew more than the hematologist, and traveled into China, Thailand, Egypt, Italy, England, Singapore, Macau - and I never even thought to have counts checked beforehand. I just kept on doing what I/we wanted to do. I was more upset when my count dropped to the gutter after a tetanus booster 13 years after diagnosis because I thought I'd have to go on prednisone again [refused it and had WinRho] and that gave me a case of shingles thanks to the stress. Yes I have developed a couple more autoimmune disorders, but not because of ITP.