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Re: New to ITP, my story attached, have questions 10 years 10 months ago #11108

  • eklein
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KO, how's your gut? Might have a lead for you if you have gut issues too.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Re: New to ITP, my story attached, have questions 10 years 10 months ago #11109

  • KO27
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I've had IBS since childhood, but it's not severe, only inconvenient. I've had two colonoscopys, with both results being termed "Grossly Unremarkable", which in layman's terms I believe means "Good".

Otherwise nothing of note. What are you thinking?

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Re: New to ITP, my story attached, have questions 10 years 10 months ago #11110

  • eklein
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Well, I had/have IBS also, but in the years prior to and especially after my diagnosis, it got really bad. Like, really bad. I discovered (through research and then gastro testing (real MD stuff)) it was related to something akin to lactose intolerance but this is called fructose malabsorption. Anyway to cut to the chase - I changed my diet a lot and my IBS is 90% gone (only when I eat what I shouldn't) and at the same time I'm in a sustained remission from ITp. Dr. at PDSA conference said gut problems can mess up immune system and contribute to platelet problems, so clearing up gut problems could help. But ALSO, the fructose malabsorption can cause head fuzziness and fatigue when I eat the wrong things.

Might be worth googling at least. How do you do with apple juice? If it is poison to your gut, look into this!
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Re: New to ITP, my story attached, have questions 10 years 10 months ago #11111

  • eklein
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Not to give the wrong impression - my remission was kicked off by rituxan 2.5 years ago. My counts dropped a bunch after 9 months but that was right when I changed my diet and coincided with the platelets climbing back up again.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Re: New to ITP, my story attached, have questions 10 years 10 months ago #11112

  • KO27
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Very interesting. Consider it Googled. Thanks, that is one more thing to consider.

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Re: New to ITP, my story attached, have questions 10 years 10 months ago #11113

  • eklein
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Primary researcher has been Sue Shepherd out of Australia.
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Re: New to ITP, my story attached, have questions 10 years 10 months ago #11139

  • tamar
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KO, how has your sleep been since starting steroids?

I don't sit at a desk all day, either. Right now I'm in a hotel room in Tampa (live in St. Paul, MN).

Here's just another piece of info to put into the mix of decision tools for "pre scheduling" treatments. After my first WinRho tx (17K the day before treatment), I was in the 180s on day 7 and around 60k on day 14. Doc suggested waiting to see what would happen next, rather than scheduling a treatment. Platelets actually went up into the 70s the following week, and didn't drop to 40K until the end of week 6. That early experience obviously colors my suggestion to you to let things play out. Knowledge is power, and knowing both that my platelets might rise slightly "on their own" and that the drop from week to week would not be consistent allowed me to make better decisionson further treatment (I think).

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Re: New to ITP, my story attached, have questions 10 years 10 months ago #11169

  • KO27
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Ok, platelets today, exactly 3 weeks post last IVIG treatment were 121K. This is only 6K lower than on Monday, and is well within the margin of error so to speak, so in practical terms my platelets have not dropped at all despite being at the <anticipated> tail end of the treatment's efficacy.

Because of this, and some prompting on-board here, I have consulted with my hemo and we have pushed my next IVIG treatment, tentatively, from the 12th to the 20th.

I am still going to have bloodwork twice weekly to ensure I don't crater, but this is turning out to be an interesting experiment.

I should point out that I am not delaying it for the purpose of experimenting for the sake of experimenting, but rather because it's legitimately important to get a baseline on how often I actually need IVIG.

So, some unanticipated good news. Also, tomorrow is my last day of 5mg Prednisone daily; starting Sunday I will be switching to every other day for a week, and then hopefully off of it forever.

Not every day with ITP is a good one, but today is.

Thanks for reading, and best regards.

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Re: New to ITP, my story attached, have questions 10 years 10 months ago #11176

  • tamar
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Glad to hear that you got good news today. I have to say it still seems odd to me to schedule IVIg before it's indicated. It's been 2-3 years since I needed any type of infusion...maybe infusion rooms are getting busier and requiring scheduling further out than in the past. I guess it hurts nothing as long as you can cancel without penalty.

It's good you are able to have bloodwork twice weekly. How long do you have to wait for results?

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Re: New to ITP, my story attached, have questions 10 years 10 months ago #11278

  • KO27
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Update- Platelets @ 115K today, 3 weeks, 3 days post IVIG. That is a drop of 6K over the weekend, which again, is within the margin of error for daily fluctuations. This means it's only dropped 12K in the last week, and according to my hemo 12K is within the margin of error, so statistically my platelets haven't moved appreciably since last Monday.

This is turning out to be pretty interesting. Next bloodwork on 1/13.

BTW, the results are received in real time at my hemo's office. Takes about 5 mins.

Thanks,

KO

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Re: New to ITP, my story attached, have questions 10 years 10 months ago #11499

  • KO27
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Meant to update previously; platelets were at 122(!) on Thursday 1/13/11. This is an increase of a small amount (within the 'margin of daily fluctuations') but nevertheless it is still an increase at a time when my hemo would have expected the efficacy of the IVIG to be nearly exhausted.

This measurement on 1/13/11 was one day short of the four week mark, and I do have another CBC scheduled for later today, with my IVIG tentatively scheduled for this Thursday the 20th if my platelets would crater and I would require it. If my platelets are still strong today I expect we will push it out further.

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Re: New to ITP, my story attached, have questions 10 years 10 months ago #11503

  • barrelgal
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That's great news! So glad the IVIG seems to have worked so well for you!

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Re: New to ITP, my story attached, have questions 10 years 10 months ago #11546

  • KO27
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Ok, this is starting to get a little interesting. My platelets on Monday were at 118 (still!) to the surprise of my hemo.
Not that this is miraculous or anything, just somewhat unexpected.

So, to recap, that is 31 days from my last IVIG treatment and my platelets have been and remain in a narrow (127 to 115) but obviously very positive range, and I feel great.

My hemo said he wasn't going to schedule a 'next' IVIG treatment until my platelets drop, and my CBC's are now once per week instead of twice. I will be tested each of the next two Mondays, and he has suggested that if my platelets remain in this range for that duration he would have to consider the possibility of a spontaneous remission.
I think it's premature for that and in fact hesitated to mention it because even as optimistic as I am I don't want to get my hopes up unreasonably.

I tried to ask how many patients this approach has worked for but my hemo said he hasn't really had anyone else take my approach and elect medium-term IVIG over surgery and then push the IVIG to determine the duration of it's effectiveness.

In any event, I'll update again next Mon./Tues.

Best Regards and thanks to all

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Re: New to ITP, my story attached, have questions 10 years 10 months ago #11550

  • server
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  • newcreationchangingdaily
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:woohoo: I'm doing the happy dance with you!
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen

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Re: New to ITP, my story attached, have questions 10 years 10 months ago #11554

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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That's great, KO!

Others have done what you are doing. I wouldn't consider it unusual. The one thing you learn about ITP is that you can't predict what will happen next. Everyone is different and the treatments sometimes work longer than expected and/or shorter than expected.

Good luck - I hope your trend continues.

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Re: New to ITP, my story attached, have questions 10 years 10 months ago #11559

  • tamar
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Don't forget....half of patients respond longer than the average. I don't think it's at all unusual to just watch at this point. All commonly used treatments have at least a 20% remission rate if given for long enough. You can draw your own conclusions from that. Maybe you're in that 20%! That would be great!

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Re: New to ITP, my story attached, have questions 10 years 10 months ago #11697

  • MDgal
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KO, welcome to the forum. I hate to burst your bubble but I was treated at Hopkins and followed up closely for more than 6 months by specialists there and no one had any answers for me on why this happens. They even told me they do not do any additional research on ITP. When I was hospitalized there I asked every single question you can possible ask and asked to be tested for everything I could think of, but everything came back fine except that my platelets were low. I asked them if there is something special I should be eating? They said "No", the cause of itp is unknown. My Doctor there presented my case to a board of hematologists, guess he was tired of all my one zillion questions :-). I knew it was time to seek alternatives when he came back from the presentation and told me "Sorry, we don't know what is causing this. We think you should seriously consider a splenectomy. You seem to have a chronic case of ITP". That was the end. Nothing else was being offered to me except what is being offered to most on this board in a trial and error format.

Now, my case is not as complicated as some. Other than the ITP, I really have no other serious health issues. So I was sooo fustrated from going through one treatment after the next, just the way the medical books have them listed. The IVIG almost killed me. The Rituxan didn't do anything for me. The winrho made me really sick. The prednisone which was forever present while I went through all of this caused ALOT of issues that I am still struggling to recover from. So, I personally had to stop and re-assess the entire situation and realized that these medicines were going to kill me faster than the chance of bleeding to death. So, my next journey led me to seek natural treatments, Homeopathy to be exact.

Some on this board are quick to discourage others from going that route. I think the ones that speak the loudest against it are those whose ITP is under control. I took upon myself to try that route because everything else had failed for me. My first victory going the homeopathic route was getting off the prednisone, something that my current Hematologist had said was impossible. I am still on my homeopathic journey and feeling better and better as the days go by but not quite where I need to be. Homeopathy is not a magic pill, it takes time but I am riding it through till the end since I am seeing results...it just may save my spleen and help rebalance my immune system to work in harmony with everything else. I hope you feel better soon KO. Good luck with any treatment you decide to take. It's your body and don't be forced to do anything you don't want to do.
"With man this is impossible, but not with God; all things are possible with God." - Matthew 19:26

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Re: New to ITP, my story attached, have questions 10 years 9 months ago #12231

  • KO27
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Hello everyone; just doing a little catch up on my situation.

My second and most recent IVIG treatment had been on 12/17/10 and my platelet count had held pretty strong between 115 and 128 for about 5 weeks, then it dropped to 84K, 86K, and finally 54K at the end of week 7.

Prior to the 54K measurement I had been feeling uncharacteristically arthritic, or at least what I as a 41-yr-old imagine arthritis to feel like. I went to bed last Saturday night feeling like I was 20 years older, and this strange feeling lasted until I had my third IVIG treatment, yesterday, February 9, 2011.

It was an odd feeling because rather than the severe tiredness that I commonly felt when my platelets were diving (though usually only clearly apparent under 45K), I wasn't fatigued and had no perceptible brain fog. I was, however, feeling creaky as hell, and it was somewhat frightening because I had no idea if it was permanent, or perhaps a symptom of something else, or both.

My IVIG nurse was very nice, and explained that because I tolerated the IVIG so well previously she had been given permission increase the IV drip from 1 bottle per hour to 1 bottle every 45 minutes. My treatment was 7 bottles so this would save me 1 hour 45 minutes in the chair, which I was in favor of.

However, something happened and my bottles started taking less time; the second to last one took 30 minutes and the last just 20. I felt a little weird upon leaving but I attributed it to possibly not having all of the prophylactic Benadryl scrubbed from my system.

However, all last night and through the morning and afternoon today I was head-achey with an upset stomach. I had finally had a reaction to IVIG, though it was admittedly mild. I don't know if there is a direct one to one relationship between the speed the IVIG given and it's likelihood of side effects, but I am going to test this out next time by insisting that it's provided slower.

Also, while I had been taking Chinese herbs in a cold, muddy tea, I stopped around the time of my last IVIG treatment in December. This will provide a good basis for another experiment. I got 7.5 weeks before my platelets dropped to 54 on the last dose of IVIG and no Chinese herbs. This time I started (today) taking my Chinese herbs as indicated (3 times a day) and I'll see how long this most recent dose lasts with the "help" of the Chinese herbs.
Obviously if it's better or worse with the Chinese herbs (and it almost certainly will be)the first time, it doesn't mean anything statistically, yet. I will alternate my Chinese herbs with my IVIG treatments and perhaps after 3,4 or 5 pairs of cycles some meaningful data will show up.

Best Regards,

KO

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Re: New to ITP, my story attached, have questions 10 years 9 months ago #12236

  • CindyL
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KO, the slower I got my IVIG, the better I felt after. I went from getting it over 3 hours to 6 hours. In my case, it really did make a big difference. But remember, we are all different.

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Re: New to ITP, my story attached, have questions 10 years 9 months ago #12493

  • Kichter
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My IVIG infusion took 13 bottles and 12 hours to administer. I had a very mild reaction that was caught quickly by myself and the nurse I had. My face started to swell up! The nurse had to stop the drip and administer more Benadryl through my IV. That burned my vein like crazy and the nurse didn't think the IV would hold. I have an awful time with IV's and lately my veins all want to run away from just getting a CBC. My IVIG was administered overnight as a short-term admission to the hospital. I was up all night long as I had to pee every 20 min. thanks to all the fluids. I don't believe I would choose that route again because it was very hard on my kidneys and I have a strong family history of kidney problems anyway. Oh, I did get a year and a half remission out of it though!

My triggers seem to be the stomach flu or bronchitis or some other form of severe virus. I've had mild head colds and my counts never flinched! I keep going in for monitoring. My next appt. is on Feb. 21, 2011. Last count was 167,000 and last treatment was the standard Prednisone. I get brain fog from the steroids and cannot concentrate on anything. I also get very anxious on steroids and have one episode of physchosis where I literally went nuts. (Rhoid rage anyone? ....and people take this on purpose?) Again, I recognized it and ran to my Doctor's office. They had to do a really fast taper and then I had renal insufficiency. I slept for two weeks solid, became depressed, and was extremely dizzy.

It is indeed a slightly different journey for everyone who has had ITP. It is comforting to be in touch with others out there with the same disease though.

Kathy

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Re: New to ITP, my story attached, have questions 10 years 9 months ago #12499

  • Ann
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Different steroids. People don't take corticosteroids on purpose for other reasons, they take anabolic steroids. Totally different thing :laugh:

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Re: New to ITP, my story attached, have questions 10 years 6 months ago #14915

  • KO27
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Hey everybody, I hope you are all doing well.

I took a break from the forums for a while, mostly because I didn't have anything new to report, but as I have my first visit to Johns Hopkins tomorrow and my condition has evolved some, I'd like to get some input.

I have been in a holding pattern with IVIg sustaining my platelet count while waiting for my Hopkins appointment, and it was initially quite promising with the second dose lasting 7 weeks.

Unfortunately, each successive dose has lasted less and less time, to the point that my most recent infusion barely lasted two weeks. Yes, I understand that a 2-3 week duration is much more typical than what I started with, but since I got better results at the start I am left first with the question of whether my body is becoming somehow inured to IVIg (without my illness itself getting worse) or if my ITP is somehow getting progressively worse.
That's actually a good question itself; is ITP known to be a progressive disease? I feel like I should know the answer to this, but it never came up before as my condition was pretty much constant.

Next question; is there any concrete value (beyond satisfaction) to knowing whether or not one's ITP is idiopathic or immune? Does this inform treatment options in any way?

I would be quite grateful if anyone has any answers for these questions or experiences they could relate.

I'll let everyone know how it went at Hopkins sometime this weekend.

Very Best Regards,

KO

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Re: New to ITP, my story attached, have questions 10 years 6 months ago #14919

  • eklein
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Hi KO.
All ITP is considered immune now not idiopathic. The latest guidelines I think stated this. But what you have in mind is whether the ITP is primary or secondary. For example, my ITP is secondary to lupus. If as far as you know ITP is the main thing you have, then it is primary. If it is likely caused by something else you have, it is secondary. I think this will turn out to be a big differentiating factor in what treatments are effective, but I'm not a doctor and I don't play one on tv.

I have never heard of ITP getting progressively worse. It seems to follow different courses in different people. But I have heard many times on this board of certain treatments becoming in-effective gradually or suddenly. For me, WinRho worked pretty good the first time, lasting almost two months, then the second time not so good and not so long and the third time pretty much not at all.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Re: New to ITP, my story attached, have questions 10 years 6 months ago #14920

  • KO27
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Erica,

This is what I read on wiki:

In many cases, ITP's cause is not idiopathic but autoimmune,[13] with antibodies against platelets being detected in approximately 60 percent of patients. Most often these antibodies are against platelet membrane glycoproteins IIb-IIIa or Ib-IX, and are of the IgG type. The famous Harrington–Hollingsworth experiment established the immune pathogenesis of ITP.[14]

My Hemo confirmed this, but we've never performed a test to attempt to detect if I had anitbodies against platelets.

This was what I was curious about.

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Re: New to ITP, my story attached, have questions 10 years 6 months ago #14921

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Hey KO - I was thinking about you the other day!

I've never thought of ITP as a disorder that is progressive....just a disorder that can change. Treatments can become ineffective for several reasons, and I suspect a lot of it has to do with antibodies that change. There are antibodies that affect destruction and antibodies that affect production. Those can come and go. This is most likely the reason for spontaneous remissions. Having Lupus, I have certain antibody tests done all the time. The antibody titers change constantly and many times are not even detectable. I suspect the same is true with ITP.

Having antibodies or not having antibodies does not affect the course of treatment. I was tested and had a high presence of antibodies (don't know which ones), but we still went down the treatment line like everyone else. They just don't know enough about which antibodies respond to which treatments yet and I'm not sure knowing would make a difference.

All ITP is considered immune now. Wiki is not reliable (Blood Journal is very credible). If a person does not have antibodies, one possible reason is that they have antibodies that are not yet able to be detected. Antibodies that affect production have just recently been 'discovered', so there may be a lot more to learn here. It's coming, slowly but surely.

Good luck tomorrow and yes, let us know!

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Re: New to ITP, my story attached, have questions 10 years 6 months ago #15160

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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So how did it go?

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Re: New to ITP, my story attached, have questions 10 years 6 months ago #15173

  • KO27
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Hey all,

Sorry it has taken me a week to get back to the forums. I had a plane ride back from Baltimore and then a full infusion of IVIG on Monday and another on Wednesday and despite hydrating to the point of being a water balloon (gained 5 pounds in 2 days), I've been hammered by side effects since my second dose. Today is Sunday and the effects are starting to recede, but it's not been fun.

Johns Hopkins was most everything I expected it to be. They took 9 vials of blood initially, and based on the results of these (at least the ones that could be obtained immediately) they took another 9, for a total of 18. That's a first.

My local Hemo just got the report from Hopkins late last week and while it hasn't been fully disseminated to me (the doc from Hopkins is supposed to call me as well), it seems as though the upshot is that I have some mild hemolysis, which is red blood cell destruction in addition to ITP. This is usually described as Evans Disease, and if you thought ITP was rare you ought to look this one up.

However, what I have been told, and read, is that rather than Evans being a disease itself it's more of a term to describe someone who has these two issues happening simultaneously, though that's not even itself accurate:

This is from the Journal of the American Society of Hematology: "ES is more than a coincidental combination of immune cytopenias but rather a chronic state of profound dysregulation of the immune system that may be associated with or show other autoimmune or lymphoproliferative disorders as well as primary immunodeficiencies."

So, on the surface it appears to be bad news, but rather perversely I feel a little bit better having some answers or the beginning of some answers.

I will find out more this week, but I'm guessing I'll be in line for Rituxin in short order as it has a reasonable efficacy with this ES, and we'll go from there.

I am likely going to have a knee-to-nose PET Scan and some sort of liver workup to see if my body can handle certain immunosuppresant drugs if I choose to go that route.

As the stakes appear to be increasing I am also going to strongly modify my diet and increase exercise. I'm 5'7", 153 pounds and the most I've ever weighed is 160. I have a reasonably slight build so I can certainly lose 13 to 15 pounds of fat. My diet is presently one of chicken and ham, with no red meat but no real vegetable intake, so I'd expect to see larger gains from diet than exercise as my diet isn't balanced.

I have started reading Dr. Weil and will probably commence on his 8 Weeks shortly. I was determined that if I were going to pursue a special diet that it must be one that demonstrates objective results that could improve my condition, and I think his does.

I did ask the Dr. at Hopkins if there are any special diets that have been shown to have a positive response to ITP-ish conditions and he said that if he were practicing on Long Island instead of at Hopkins he would probably be selling all kinds of diets, but as it is the only item he or his colleagues have seen that appears to increase platelets are Blueberries. Seriously.

He did also prescribe me 1MG of folic acid per day, though I'm a little embarrassed that I don't know why. I need to ask him when we speak.

So, this is what I have so far, but I expect to learn a good bit more this week and will update when appropriate.

While it's too early to make any complete assertions, I will say that the Hemo at Hopkins seemed dramatically more in touch with my condition than my local Hemo. He was able to answer each of my questions, whereas my local guy answers an honest 95% of them with "I don't know".
I have to give a lot of thought to not just my treatment but my choice of doctor. I'll write more on this later, but as an preview and possibly a warning it's appearing to me that there is a wide berth in both the competency and motivation of Hemos that I've interacted with. I would have expected this if I lived in a small, rural community, but I don't. I live in a top 30 MSA and am supposedly seeing the best blood guy in town. Again, he's a good person, but he has very limited curiosity about my condition, which is excruciating for me at times, and this is why Hopkins was such a revelation. We'll see if it continues to be.

Peace

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Re: New to ITP, my story attached, have questions 10 years 6 months ago #15174

  • eklein
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Hi KO,
Totally agree with you about the doctors. The things we hear from board memebers about their doctors - at least we get a sense of what to look out for. I still have family members that blindly follow what the doctor orders without researching themselves or getting second opinions. Bad idea.

We have had a few board members wtih Evans - not many but if you search you'll find some threads. Also have had a few discussions about blueberries! Pretty interesting that the Hopkins doctors mentioned them. Do you know if anything has been published about the blueberry effect?

Don't you think ham is red meat?

Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Re: New to ITP, my story attached, have questions 10 years 6 months ago #15177

  • KO27
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Erica,

I'll be honest in saying that I don't know anything about the Blueberry effect. Nutrition is a shortcoming of mine, but hopefully won't be for much longer.

Ham may be red in color, but obviously it's pork ("the other white meat") instead of beef and the fat content and any number of other facets are not comparable. I also don't easily digest beef and have never (to the humor of my friends) understood why steak is prized on any level. I process ham as easily as chicken or anything else, so from a functional point of view there is a huge difference to me between beef and ham. I understand this may well be idiosyncratic to me, but it's what happens. :-)

Evans is rare enough, particularly at my age (41) that there are very few doctors that have practical experience with it. I'm guessing we will at some point determine an underlying cause and my sole hope is that it is something treatable.

At least I'm getting somewhere and I'm not just having my spleen yanked as a science experiment. Somehow I think I'm going to need it when they do figure out what is causing this.

Thanks

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Re: New to ITP, my story attached, have questions 10 years 6 months ago #15178

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I take it you are Coombs positive then? Has it affected your red cells? There have been a few people here who have had a positive Coombs, but no red cell destruction. I'm hoping that's the case for you!

I've had that much blood taken at a time. Not fun!

I'm glad you liked your doctor.

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