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TOPIC: Hi Everyone, New Diag, just started Pred...

Hi Everyone, New Diag, just started Pred... 2 years 5 months ago #56572

  • wquine
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6 rounds? I thought it was only 4 :sick: :sick: :sick: . I am better today but probably right about the chills Hal, got a nasty cold going on was hacking all last night. But even though I feel awful its a marked improvement over yesterday! Could actually get out of bed without becoming overwhelmingly dizzy.

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Hi Everyone, New Diag, just started Pred... 2 years 5 months ago #56573

  • 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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Protocol is six, but some doctors might choose to do only four.

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Hi Everyone, New Diag, just started Pred... 2 years 5 months ago #56643

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83 on last count, currently encouraged and cautiously optimistic though I know the next round I'll likely be questioning the process once again. Hematologist wants me to wait out the week and then begin the 3rd run thereafter.

Is there any studies showing how much a cold takes down counts?

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Hi Everyone, New Diag, just started Pred... 2 years 5 months ago #56648

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Last was 83? Nice wquine, more than 50. Sounds like real progress weak-over-weak. Do you suppose dr gave you a weak off because of cold?

To try to address your question, had a mild cold which didn't seem to affect my counts. Only one experience. I can imagine a bad cold might be problematic though...

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Hi Everyone, New Diag, just started Pred... 2 years 5 months ago #56682

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Sandi (or anyone) is there any documents I can read on how a cold can affect counts?

Also my next Pulse is not scheduled to start until Nov 28th and I've been 2 weeks of the last pulse already. Why the long layoff? Is that protocol? Would also like to read more studies on this if anyone has links. If I find one myself I'll post a link on here.

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Hi Everyone, New Diag, just started Pred... 2 years 5 months ago #56683

  • Sandi
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Wquine:

Colds and other illnesses affect everyone differently. Some people actually have a large spike in counts when they are sick. Some are not affected at all, and others take a dive. I haven't read any articles about it since you can't predict what will happen.

I don't know why your doctor is following that schedule. Protocol is four daily doses once a month for six months (pulse every four weeks X 6). Some doctors do what they want.

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Hi Everyone, New Diag, just started Pred... 2 years 5 months ago #56687

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I'll forget about the cold theory, our autoimmune seems to doctors like a virus aka they have no clue.

Yes my doctor seems like he does his own thing, social grace is lacking, though a nice enough fellow, just have to look beyond the deadpan persona.

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Hi Everyone, New Diag, just started Pred... 2 years 5 months ago #56688

  • Sandi
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In the monocenter study, 37 patients with severe ITP, age at least 20 years and no more than 65 years, were enrolled. HD-DXM was given in 4-day pulses every 28 days, for 6 cycles. Response rate was 89.2%; relapse-free survival (RFS) was 90% at 15 months; long-term responses, lasting for a median time of 26 months (range 6-77 months) were 25 of 37 (67.6%). In the multicenter study, 95 patients with severe ITP, age at least 2 years and no more than 70 years, were enrolled. HD-DXM was given in 4-day pulses every 14 days, for 4 cycles; 90 patients completed 4 cycles. Response rate (85.6%) was similar in patients classified by age (< 18 years, 36 of 42 = 85.7%; ≥ 18 years, 41 of 48 = 85.4%, P = not significant), with a statistically significant difference between the second and third cycle (75.8% vs 89%, P = .018). RFS at 15 months 81%; long-term responses, lasting for a median time of 8 months (range 4-24 months) were 67 of 90 (74.4%). In both studies, therapy was well tolerated. A schedule of 3 cycles of HD-DXM pulses will be compared with standard prednisone therapy (eg, 1 mg/kg per day) in the next randomized Gruppo Italiano Malattie EMatologiche dell'Adulto (GIMEMA) trial.

www.bloodjournal.org/content/109/4/1401?sso-checked=true


This gives two protocol options:

Although it has been abandoned in the treatment of chronic refractory ITP patients,39,40 recent results from 2 large first-line studies with dexamethasone suggest both a high initial response rate and a substantial sustained response rate (Table 4). Administration of dexamethasone 40 mg/day for 4 days (equivalent to ∼ 400 mg of prednisone per day) produced sustained response in 50% of newly diagnosed adults with ITP. In another study, 4 cycles of dexamethasone (40 mg/day for 4 days) given every 14 days produced an 86% response rate with 74% having responses lasting a median time of 8 months.41 RCTs are needed to definitively assess these encouraging results and to distinguish whether pulse dexamethasone is the preferred corticosteroid approach with regard to response, duration of response, and toxicity.

www.bloodjournal.org/content/115/2/168.full
The following user(s) said Thank You: wquine

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Hi Everyone, New Diag, just started Pred... 2 years 5 months ago #56690

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Excellent, I will read through both and also check the references. Want to study the % growth to expect and why the month spread between pulses.

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Hi Everyone, New Diag, just started Pred... 2 years 4 months ago #57181

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Sorry its been a while, just got results from latest CBC and we are back at my seemingly baseline of 40-50. The first pulse produced a 60ish after a week, the 2nd 80ish after a week, and now we are at 40 whatever and the Hematologist now wants Rituxin but I'm not so sure after being here it seems like I should just go on my own now I know how to monitor. I would be more disheartened except I really did not cope well with the Dexemethisone. I know if I need dental work or a surgery I would much prefer prednisone.

Trying to just have a positive attitude going forward after reading on here about others trials and very low counts, my heart goes out to you and I hope that there will one day be a definitive cure to ITP. This is not goodbye however, I will keep checking back and monitoring other threads.

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Hi Everyone, New Diag, just started Pred... 2 years 4 months ago #57182

  • Sandi
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Yes, please check in. Hopefully, you can maintain the 40-50 and stay treatment-free.

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Hi Everyone, New Diag, just started Pred... 2 years 4 months ago #57190

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Thanks Sandi, I believe you said from the beginning that even if the steroids were successful than eventually we come back down because there is no real cure even if the "normal" counts can last years, eventually they return to our baseline. Also I believe I'm right in thinking that sometimes our body just "figures" it out and we can rise on our own correct? I think I've read of such things on here in other threads. Either way I don't think rituxin is for me and just happy to be away from these drugs for the time being!

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Hi Everyone, New Diag, just started Pred... 2 years 4 months ago #57205

  • Hal9000
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Yea, without any doubt, I'd walk away from treatment with a count of 40+. There is a difference though. I don't have any nose or gum bleeding (knock on wood). But on the brighter side, if your counts fall there should be some warning and can seek treatment. Have I captured your thinking?

It's been awhile. Is it possible just staying away from benzene for 6+ months might give system time to recover? Seems you respond well to steroids - which treats allergy issues. Just stay away from the substance you might be allergic to for awhile? Or, was there some other suspected culprit besides benzene?

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Hi Everyone, New Diag, just started Pred... 2 years 4 months ago #57209

  • Sandi
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I once read that it's possible that the body lowers counts on purpose to adjust for other potential problems such as clotting. You may never know the reason, but maybe some of us are just supposed to be lower than normal. A good percentage of people with ITP also have APS antibodies and are not aware of it. If counts are stable at a safe level, why mess with it?

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Hi Everyone, New Diag, just started Pred... 2 years 3 months ago #57297

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Just because I work in a physical environment I wanted a 100+ count to avoid constant bruises, plus I was experiencing bleeding gums and nose. I wanted to try but I think you were right Sandi and I kind of regret going through these steroids and now still have side effects lingering. Still have acne and joint pains. Does anyone know how long these last for. Also had weird remarks in my CBC which scared me and I really just want to take a break from this. I am going to get another CBC soon after xmas so I figured I'd try and boost my counts through supplementation. I'll let you know how it goes and what I took.

Sandi - if I have the big new cells and other auto immune issues in my body its likely its an immune thing with my blood I would think. I don't know about APS antibodies I will look into it.

Hal - The benzene stuff scares me, I'm going to just stay away from it forever, went around it once or twice since being diagnosed but will stop altogether after last scare. Only other working theory is I had many shots before getting diagnosed and heard this was a theory from some. But I think I was having bleeding before that. I wish I took a diary about the bleeding but for some reason it never disturbed me before diagnosis. What can I say, doctors & hospitals scare me.

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Hi Everyone, New Diag, just started Pred... 2 years 2 months ago #57993

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I have not been away and have been checking in from time to time. But I did not want to post an update until I knew that I was maybe onto something with dieting. My Hematologist got to the point of either Rituxan or removing the spleen and neither of those were ok for me especially considering it seemed like my baseline was 40-50. So I took advise from threads here and researching everywhere.

It seems like the AIP (AutoImmune Protocol) diet works with other autoimmune "diseases". I decided to try it for ITP because when taking the prednisone my leaky gut also improved even though prednisone is known to make digestive issues worse! This was a clue that I was truly experiencing an autoimmune disorder.

I have not been perfect by any means but my counts have gone up (now over 100!!) and hopefully will continue to rise. I did not want to post anything because I was unsure it was working. I'm doing videos to hold myself accountable and hopefully help others.

www.youtube.com/watch?v=47ELrkZfJyE

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Hi Everyone, New Diag, just started Pred... 2 years 2 months ago #57994

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That's just the first video when my counts were prob around 40-50. I uploaded 4 videos.

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Hi Everyone, New Diag, just started Pred... 2 years 2 months ago #57998

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Just watched all 4 videos.
Interesting & very honest. It looks an incredibly hard diet to try for someone who loves eggs and dairy, not to mention the odd pint of real ale.

Love your cat, who is very similar to mine. Great name.We once had a dog called Zeno

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Hi Everyone, New Diag, just started Pred... 2 years 2 months ago #58001

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Great that your counts went up! Good for you. I just watched the videos and really enjoyed them- yah I totally get what you're saying about the hematologist. You don't even have to explain- we've been there. I thought they must be joking to remove a healthy spleen. I was psychotic on dexamethasone- hearing voices while lying awake all night. I had lost it, but still knew it was the drug so had some grip on reality. "Pulp Fiction" haha yes. I did dexy once, and swore I'd never do it again. A week of misery for a week of good counts- not worth it.
I've been off sugar for nearly 2 years- lost 35lbs that I had gained from prednisone. So that was good, but still eat bread, dairy. I have joint pain and possibly rheumatoid arthritis, high C-reactive protein. My white cell count is high too, which can also be a marker for inflammation-- I've really got to try the diet! I like the video DVD "Fat Sick and Nearly Dead". If you haven't seen it, you must. It has motivated me to eat more vegetables and fruit, veggie juices, smoothies.

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Hi Everyone, New Diag, just started Pred... 2 years 2 months ago #58011

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mrsb04 wrote: Just watched all 4 videos.
Interesting & very honest. It looks an incredibly hard diet to try for someone who loves eggs and dairy, not to mention the odd pint of real ale.

Love your cat, who is very similar to mine. Great name.We once had a dog called Zeno


Oh trust me I slip up plenty, but its so easy to get down. I'm not sure if I'd be able to continue if there weren't any signs of progress. I know Xeno is the real star, he is my little furry shadow, always has to be in the same room, even the bathroom!

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Hi Everyone, New Diag, just started Pred... 2 years 2 months ago #58012

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poseymint wrote: Great that your counts went up! Good for you. I just watched the videos and really enjoyed them- yah I totally get what you're saying about the hematologist. You don't even have to explain- we've been there. I thought they must be joking to remove a healthy spleen. I was psychotic on dexamethasone- hearing voices while lying awake all night. I had lost it, but still knew it was the drug so had some grip on reality. "Pulp Fiction" haha yes. I did dexy once, and swore I'd never do it again. A week of misery for a week of good counts- not worth it.
I've been off sugar for nearly 2 years- lost 35lbs that I had gained from prednisone. So that was good, but still eat bread, dairy. I have joint pain and possibly rheumatoid arthritis, high C-reactive protein. My white cell count is high too, which can also be a marker for inflammation-- I've really got to try the diet! I like the video DVD "Fat Sick and Nearly Dead". If you haven't seen it, you must. It has motivated me to eat more vegetables and fruit, veggie juices, smoothies.


Yes! The Dexa is pure evil! It changed me so much and none for the good, plus I feel these new pains still. I was seriously in a bad dark place. That's why its nice to have this forum. The Hematologist is just doing his job and that's it. Psychology is vacant with him. We can get mad all we want but enough is enough. I would recommend doing a video even if anxious because now that I've shared, I have more of a responsibility to endure the diet. That's great to be off the sugar and difficult to maintain. I will check out that video for motivation.

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Hi Everyone, New Diag, just started Pred... 2 years 4 weeks ago #58568

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Sigh, sorry for the long delay but I finally put an update here: www.youtube.com/watch?v=EfOt0Gz7T2c

Just don't want to think about it but I really need to go in for another test. Hopefully it will be all sunshine and rainbows. May your counts be up!

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Hi Everyone, New Diag, just started Pred... 2 years 3 weeks ago #58575

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Saw your latest youtube wquine. Wasn't sure what was going on - didn't see Xeno anywhere. Replayed, nope, nothing. Then I finally realized. Xeno was hiding in your hair ! Oh my gosh, he was hiding really well. :)

About a 'litmus' test. I started with a 12 count and now often have a 30 count. If 'easy bruising' has changed to a little less easy bruising, I can't tell. Maybe if you can get a count test with very minimal bleeding for flossing you can use that as a reference.

One other thing. I never thought I was going to get over being stuck by a needle. It took a while, a long while really, but now I don't dread going in for a CBC like I used to.

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