TOPIC:

So I have been reading up on these great forums for that last few weeks and figured it was time to share my story so far. Thanks to everyone that has posted their stories and advice. I have found a lot of answers to my questions on here.
I was diagnosed with ITP 5/23/2019 at the age of 48. It was discovered through routine blood work at my yearly physical with a platelet count of 26 in March 2019. The last blood work I had before March 2019 was in August of 2017 for a knee surgery and platelets were at 100 then (missed my 2018 physical because of a move). I guess it wasn't low enough for them to be concerned about the surgery? When my primary Dr. saw the counts at 26 in March 2019 he sent me to a Hematologist. The Hematologist performed blood work and put me on a Dexamethasone 40mg 4 day pulse that raised me up to to a maximum of 52 after 12 days and back down to 36 after 3 more days. All the blood work came back good. I don't seem to have any of the diseases that cause ITP. I even had the Dr. test me for H. Pylori, which came back negative as well. The Hema also sent me for an ultrasound and my spleen and liver both look good. They did a bone marrow biopsy 6/7/2019 and put me on Prednisone 80mg/ day until I see Dr again in 3 days. I am really hoping that I respond to the Prednisone better than the Dex. Hematologist also said to stop taking vitamins and probiotics for now.
I should mention that I went gluten free, cut out alcohol and started eating healthier when this all started and doesn't seem to have changed platelet counts, but I have lost weight.
As for symptoms, I have really only had bruising and that was just recently when counts were in the 20's. I played hockey in a men's league over the winter and into the spring without any bruising. If my counts were low then it should have shown itself I would think. Physically I feel fine, but mentally I just want to know what is wrong and how to fix it.

It is frustrating, I know, I was diagnosed in January of 2018, when weird symptoms made me go to my Dr. I was having huge blood blisters in my mouth, some nose bleeds, and some bruising. My platelets were 5000 so I was admitted to the hospital for 4 days. Everything seemed OK, but in March, the same thing happened and I was in the hospital again. Prednisone works ok, but I can't take it much because I am diabetic, and it raises blood sugar. You may want to ask your Dr about other treatments, Nplate is an injection I get once a week, and it has kept my platelets at a good level. There is a new drug for ITP that is coming out, I don't know the name the nurse at my Dr's office said it starts with a T. Anyway, hope this info here and in this forum helps you.

ecoclayton- Welcome to the forum, there is a lot of good information here. Sounds like your hemo is very thorough with all the tests and following accepted treatment protocol. Great that you don't have any underlying disorders that are causing the low platelets! I visit a cancer center weekly and am grateful that all I have is ITP. Dexamethasone is the current favorite for first line treatment (it used to be prednisone first). I was diagnosed in 2009 and took 80mg of prednisone with a taper that lasted about 2 mos.

Many people can live with low platelets. If my counts were above 20 I wouldn't do any treatments just "watch and wait", but then I don't play hockey. I get mild symptoms like you said, bruising light when counts are low but nothing I can't live with. There are a number of treatments available, usually doctors start with the cheapest (steroids) and work up. People can go into remission the first year, counts can bounce back up. So its not necessarily long term. Good you are making changes to diet that make you feel healthy. I am off sugar and mostly vegetarian for several years, doesn't improve my platelet count but I've lost 40 lbs, exercising and feel much healthier and have more energy.

I'm on the drug NPlate which has kept my counts up into a safe range around 50K for 5 years without apparent side effects. Its a bother but after being on prednisone (gained 30 lbs with that) and dexamethasone, it was great to find a treatment that I felt good on. Hope your ITP is a temporary thing and you are back on the ice rink soon! good luck

ecoclayton, did the doctor give any reason why he was following Dex with Prednisone after the 52 count with Dex? From what I've read, it is the other way around. Dex usually produces a higher count. But it is a pulse and a decline so count test timing can matter.
Also. Was the 12 days from start of Dex treatment to count test, as opposed to end of Dex treatment to count test? As I recall with my pulse, for 12 days that would be the former and 8 days for the later.
They discovered my ITP when I had an appendicitis. PET? scan showed normal spleen and liver for me too.

Hal, The Dr told me that they weren't happy with the Dex results and that it usually would get the platelets up higher than what we saw and for a longer period. I assumed he would put me on another Dex pulse, but they wanted to try the Pred and then see me in a few days to check my response. My count peaked at (52) 11 days after I started Dex or you could say 7 days after I finished. (Sorry I was off by one day) 5/23 Count was 27, 5/24 Started Dex, 5/27 last dose Dex, 5/29 count 47, 5/31 - 47, 6/3 - 52, 6/6 - 36, 6/7 - 36 (Started Pred).

ecoclayton, ok. FYI, a 'partial response', as opposed to a 'full response', is where counts will go up around 50 or so on a treatment and then no further. With all those data points it looks like that happened here. It will be interesting if there is a different result with Prednisone.

You mentioned that you play hockey. Would it be fair to say that you exercise a lot? Stay fit? Also, did you have the Flu this past Flu season?

Hal, I am curious to see if the pred has different results as well. I will find out soon and let you all know.
I am pretty fit, but not a big gym person. I walk daily, ride a stationary bike on and off and play hockey on and off.
As for flu, I believe the last time I had it was in 2013 or 2014. The only connection I have been able to make timing wise is that I was in the Turks and Caicos in the spring of 2017 and ate some bad fish. That is why I suspected H Pylori, but that test came back negative. My last normal platelet count 177 was July 2016 and then to 100 August 2017.

What are you taking, about 1mg of Pred per kg of weight? Doctor checking counts every week?

Hal,
Yes about 1mg of pred per kg. I am taking 80mg a day. I will be checked tomorrow and then see the Dr on Monday and checked again then. Hoping for a good count tomorrow.

So my Dr appts went well today. I saw my Rheumatologist and was cleared of any autoimmune diseases. He said I don't need to see you again unless something changes.

My next appt was to check platelets and they were up to 47. Not as high as I was hoping, but it is an improvement from my 38 count on Monday. I guess this would be considered a partial response to pred?

I have also made an appt with an Allergist to get tested for allergies. I already know I am allergic to most tree and grass pollen, cats, horses, and dogs, but I have never been tested for food allergies. I grew up in NW PA and from there spent 17 years in NC now I live in South Florida for the last 6. I have no allergy symptoms since moving to Florida, but as soon as I go back north in Spring or Summer I am immediately sneezing and taking Zyrtec. Maybe my new allergic reaction is low platelets instead of sneezing, itchy eyes etc. I don't know if there is any connection here, but it is worth checking from what I have seen on these forums.

I have also requested blood work records from my old Dr in NC so that I can compare blood platelet levels from before all this started in 2017. Fortunately or unfortunately I went for about 5 or 6 years without seeing a DR as I really didn't have a need to at the time. The oldest test I currently have was from July 2016 of 177k. Could my platelet counts already have been dropping at that point?

Thanks again to everyone posting on these forums, as the information is so valuable to someone new to this.

Platelets at 73 today, 11 days into prednisone. So I have gone from 36 to 73 in 11 days and Dr. wants to start to lower pred dose starting day 14 if platelets still look good.

Ah, Pred is doing significantly better than Dex. So far, not a full count response.

For me, partial response analysis is difficult, especially at the beginning when not a lot is known. Still, after noticing that 'EmilyK' got 70 - 90 counts with Pred, I wonder if you are row 2&1 in my ITP treatments table. Just a guess.
Here are her posts, with the mentioned count range as top listed post.
pdsa.org/discussion-group/search.html?searchuser=emilyk&exactname=1&searchdate=all&order=inc&childforums=1&start=99

Many row 2 folks seem to take exercise pretty seriously. Hence my question to you.
pdsa.org/discussion-group/7-treatment-general/30169-no-response-to-ivig-ack.html#64535

Another good blood test on Friday! Count was up to 83. Dr. called me later in the afternoon and asked if I could handle 80mg Pred until Monday to see if platelets would keep rising. I agreed as I think I am adjusting to the side effects a little better. So 14 days into Pred and up from 36 to 83. The plan now is to start to reduce Pred on Monday.

Hal, I wouldn't say I am really serious about exercise, but I am in decent shape and try to stay at a healthy weight. I haven't done anything but a daily walk with my wife and the dog since this diagnosis.

Good count - hope that continues!
I have to admire you adjusting to the side effects of 80mg of prednisone daily - I never ever to to that point with 60mg, don't think my family did either!

MelA,
So much for counts rising. Today I was at 74, down from 83 just 3 days ago. Dr wasn't happy that peak was only 83 and counts started dropping before tapering. Dr wants me to start Rituxan (1 of 4) on Friday. She also kept me on the 80mg pred and will start tapering after 1st Rituxan treatment. Any advice from experience with Rituxan? Father in law was on it 12 years ago for Lymphoma and said it was great and had no side effects other than the 1st day.

ecoclayton my former hematologist (just got a new one who is closer) would have told me 83k and 74k are really the same.

The only thing I know about Rituxan is that my friend was on it a number of years ago when it was given in 8 doses, took a bit to kick in but she has been in remission ever since & it also helped her RA. She had no side effects from it. As with everything, any treatment will work for some and not others. I've only had prednisone and WinRho (when I refused prednisone because I didn't want to look like the Pillsbury Dough Boy for our son's wedding, and my dress color would have complimented any brusing).

I assume you would get a CBC before Friday to make sure your count has fallen to a level where you need treatment.

MelA,
I asked the Dr if 83 and 74 were within the margin of error and she said no. I will be tested friday before treatment so I am hoping counts climb or at least stay the same and we can postpone or cancel treatment. The Dr keeps stressing to keep my counts above 30, so I am not sure what the rush is for Rituxan since I am still in the 70's? I think she is just trying to push me into remission as soon as possible? I almost feel like I should try tapering the prednisone before Rituxan to see if counts drop or stabilize.

I think I was tapering my pred when I did my Rituxan treatments. I can't remember for sure. My counts started going up with the first dose. In fact, I was surprised when I got the last dose.

Believe me a doctor can't push anyone into remission - if that were the case we'd all be in remission and not here!

Isn't it interesting how hematologists think - my former one would say 83k and 74k were the same and yours wouldn't . Haven't had that conversation yet with my new one [who I am very comfortable with!].
I'm not telling you what to do by any means - but it is your body, if you aren't certain about something then ask & be comfortable with the answer.

ecoclayton, did you notice in my earlier reference to user 'EmilyK' that Rituxan did not work for her?
Sounds good that a steroid taper is planned. Wouldn't want to stay on that too long.

MelA and Hal,
Thanks again for your input. It is really nice to hear from people who are or have been dealing with ITP. Most people don't understand and frankly I didn't until I spent many hours researching.
At this point I am not comfortable with the Rituxan. I have cancelled my the Rituxan treatment for this Friday. I have yet to hear from the Dr on the cancellation. I have several reasons for my decision
1. Being that I am leaving for 6 day family vacation on Monday and don't really want to be dealing with any issues that may come about from a new drug on vacation.
2. My platelet count really isn't that low.
3. I have a few Dr. friends and a Wife that think I should wait a bit longer to see if platelets stabilize above 30 - 40.
4. As Hal pointed out Rituxan did not work for 'EmilyK' and I seem be on a similar path.
5. I have an appt with Allergist / Immunologist later this week.

ecoclayton you made your decisions and therefore they are the right ones for you, you have thought it out. Personally I didn't understand why your hematologist would want to start Rituxan with you having a count of 74k and on 80mg of prednisone. If you start Rituxan and are on prednisone and there is a count increase which would get the credit. [and I still say, bless you for being on 80mg - I was on 60mg and it was hell]

Also I don't know if any of us are on a similar path - because Emily K didn't respond to Rituxan doesn't mean you won't - you are you, Emily K is Emily K! One WinRho IV put me into what I call a remission [no treatment since then, counts up & down], not sure if that has been the case with anyone else - we are all different in how we respond to treatments. You have only been diagnosed a month now.

Enjoy that vacation!!!

ecoclayton- I totally agree and support your decision to wait on Rituxin. Good for you to trust your instinct and cancel. The one thing I've learned (2 things) by having ITP for 12 yrs is "Give the treatment time to work"- and don't have "two variables"- my hematologist said that. Meaning don't do two treatments at once because you don't know which is working- not to mention the stress on a person's body. These are really serious drugs. And who knows, you might be in remission right now? I firmly believe in taking it slowly with the ITP treatments. There is some thinking that loading up on treatments in the beginning will "push a person into remission". I don't believe there is evidence to that, but I"m not a doctor so just my opinion.

When I was first diagnosed in 2009, there was something on the Mayo Clinic website about ITP to the effect of: "Caution: the treatments for ITP can be worse than the disease". That has since been removed but I always remember it when I'm choosing treatments and deciding whether to treat or not. I also notice that oncologists and their staff are used to everything being a crisis. Many times I've had to refuse treatment, refuse a dose increase because I'm not in a crisis just because my platelets are low. I don't have bleeding issues even with counts below 10. So like you, most all of us have had to take charge, stand up to the doctors and slow down the rush towards heavy treatments. I still have my spleen but not without a fight, hah Good luck!

ps- my hemo would also consider 74 and 83 the same count as platelets are constantly fluctuating. I once got two different counts from the same vial of blood! The results were sent to two different doctors. My family doc received the higher number and said it was a medical emergency (inexperienced with ITP), my hematologist who got the lower number knew I was fine so no big deal. Also Its important to look at symptoms, not just counts. I look at the pattern over time- if my counts were 26 34 28 38 I would average those counts and feel okay that I'm around 30. My agreement with my hematologist is that my counts should be over 10.

ecoclayton
I too am in agreement with you cancelling Rituximab at this stage.
Not a treatment to be undertaken lightly and with counts of 74 & 83 (which are the same in as far as I am concerned too) one has to wonder why your haemo was thinking of starting it.
Good luck with tapering your pred. I was on 45 mg daily which was absolute hell on earth. I don't envy you on 80mg/day

MelA wrote:

... WinRho IV put me into what I call a remission [no treatment since then, counts up & down], not sure if that has been the case with anyone else - we are all different in how we respond to treatments...

Melinda, in my PDSA notes you are one of two that have achieved some sort of remission with WinRho. An earlier post on the statistics of the treatment:
pdsa.org/discussion-group/6-general-itp-discussion/29749-itp-types-and-treatments-by-hal.html#60584
The other person is 'tgurin12'. Like you, they responded to steroids - at least in the beginning. Their WinRho remissions (more than one) were short lived though and had to move on to Rituxan. On a side note, I don't have in my notes what they thought their ITP trigger was.

Now that I'm more familiar with your ITP story Melinda, I wonder if you are one of those rare (row 1) folks who's immune system seemed to sort out 'self' versus 'non-self' given some time. Just needed some time. That any treatment, IVIG, steroids, Promacta/Nplate would have had the same outcome: durable remission. Also, given that your ITP trigger doesn't seem to be EBV related, a spontaneous remission scenario seems to be possible. No chronic EBV.

Hal there used to be someone who came here a while back, she was here for a long time and for the life of me I cannot recall her name - not Audi, oh it was Tamara. Anyway she called herself the WinRho Poster Child, she had it often if I remember right and it did well by her.

I'm in what I call remission - my counts are all over and rarely do they go into normal range - I do consider a remission as having decent counts and not treating, most don't agree with that. My ITP was triggered by a gamma globulin injection in 1989 [oh, I believe Audi was the same, she is deceased now may she rest in peace] which is interesting since that is a treatment & was back then - I was not ill nor had I been sick any time before the injection.

You said: "That any treatment, IVIG, steroids, Promacta/Nplate would have had the same outcome: durable remission."
Well I wouldn't want IVIg because IVIg is gamma globulin and that's what triggered my ITP! I also have low Immunoglobulin G, it is at the treatable level but since treatment is IVIg we aren't going to treat now. I will never say never [that always comes back to bite you in the bum] - however I will say I don't want to take promacta/nplate as I don't want to force my body to make platelets.

Thank for all the support! I feel really good about my decision as my counts were at 91 today. The Dr. called me and wants to start tapering the pred now (80 to 75) and was in agreement with cancelling Rituxan treatment. I will get another count check 4 days and then off on vacation.

mrsb04 - The pred was really rough the first week or so, but I think I have just adapted to everything except the sleeping part. I am sure once I finally am off it, I will look back at how awful it was though.

poseymint - I would have to agree that the treatments are worse than the disease. I know this is not the case for some people, but I really only had minor unknown bruising with counts in the 20's. If I hadn't gone to a normal physical I probably wouldn't even know I have ITP yet. The 4 day round of dex and then 1 week withdrawl was awful and the first week or so of pred too. Unfortunately I have a ways to go on the pred taper.

Melinda, I can't find a user named 'Audi'. As for Tamara, that must be 'Tamar'. I see that she did claim herself as a poster child for WinRho. In looking through her posts it looks like she had a good response to WinRho but achieved remission with Rituxan. Also, she had a fairly good response to Pred (100 count) but never had IVIG. She reported having MS. I note that MS is one of those diseases where EBV is implicated. HHV6 is another implicated cause of MS.
"The Link Between Epstein-Barr Virus and Multiple Sclerosis"
www.verywellhealth.com/does-mono-epstein-barr-virus-cause-multiple-sclerosis-2440740

Since WinRho worked so well for you in the past, wouldn't it be your first treatment choice if counts became a problem?

Have you ever been tested for Mono/EBV antibodies?

Ecoclayton- Great news that your counts went up! That is always a good sign. And that the doctor agreed with your decision to cancel Rituxin. Research and making informed decisions is key, plus just trusting your sense of whats right for you.

Everyone's version of ITP seems to be unique. Over time most of us figure out what is a safe count, how much risk we are willing to take with the drugs. I'm conservative with the drugs so try to take the lowest dose which keeps my counts low around 30. I'm on Nplate because it seems to have no apparent side effects for me. I don't believe in taking high doses or doubling up on drugs to possibly achieve remission- but thats just me. I tried dexamethasone but it was a roller coaster ride- 5 days of misery- insomnia, depression, my counts shot up for a few days, then crashed. So not worth it. I tried Rituxin which kept my counts around 20-25 for 6 mos. It was enough to get me off prednisone for a while but not a great response. So then I moved on to Promacta and Nplate, drugs that were designed for ITP.

I've always felt better on pred after I get to 40mg, then even better under 20mg. I never go anywhere without some emergency prednisone, its my rescue treatment. 10mg will bump my counts up quick within hours. So though I don't like the side effects, I'm glad to have a drug that works in a pinch. Good luck with the taper. Hope the counts stay up there!

Hello all,
I survived our family vacation last week with no issues. Platelets were at 71 last Monday (the day we left) down from 94 just 4 days prior. I had reduced Pred from 80mg to 70mg and stayed at that all week. Went to the doctor again today and platelets have dropped even further to 54. So I have dropped from 71 to 54 in 1 week at 70 mg Pred. Dr is pushing Rituxan again, but I told her I was hesitant. She said we could look at Nplate or Promacta, but that they were long term drugs. I am currently looking for another Hematologist to get a second opinion. We did reduce the pred down to 60mg so we will see what happens in a few days when they check counts again.