My ITP Treatment Experiences

I have read a lot of these forums and it has been great to hear people experiences. I figured maybe i can give some back by giving mine. As a disclaimer, I am in the military so my treatment was less of a choice and more directed. Ultimately i could say no to any treatment obviously but i would like to stay in the military. My ITP started last September with counts around 22k and my treatments have been Prednisone - got my counts up to the 70ks. Side effects were 40lb weight gain, buffalo hump, moon face. The withdrawal symptoms have been the worst of all the treatments. terrible adrenal atrophy. Tapered off Prednisone by January, Back to 30-40k. If not for the military, this would have been fine for me. Besides the initial onset, i have zero side effects from my low platelets. Even when they got down to 10k. I have had a few random short term doses of dexamethsone. That worked the best for me. Counts up to 110-120k for a week or so. I did a 4 week tour with Rituximab. Sides effects were minimal. One slight case of itchy scalp the first time. Rituximab didn' work at all for me, it actually floored me down to 10k each time. I had to use the dexamethsone to bring me back. The latest has been Nplate. It has kept me at around 60k with two dips to 30k. Finally, the last thing i will have will be a Splenectomy in less than a week. Once again, if it weren't for my career, i would definitely said no to the surgery because I am extremely lucky in that my platelets are usually at a safe level. Admins, sorry if this in the wrong spot. feel free to move/delete if need be. If anyone has any questions AT ALL, please feel free to ask. About treatment, having ITP in the military, having ITP overseas (I am in italy), anything, please ask. I will post a follow after surgery.

Droopy- Thanks for posting your story! Its very interesting. Glad you found a few treatments that worked at least temporarily. Rituxin didn't work much for me either. Yes, as you said if I could stay in the 30 range I would just live with it. Well I hope the splenectomy works for you! It usually works for younger people. Just watch for blood clots in the first couple months if counts go high. Oh yes, I'm not sure- Sandi will know, about having vaccines right after Rituxin.? If you are having the 3 recommended vaccines prior to splenectomy they may not take as well within 6 months after having Rituxin therapy. Yes, keep us posted, and good luck, hope the surgery goes well and is 100% successful!

www.ncbi.nlm.nih.gov/pmc/articles/PMC3773242/

Droopy, sorry to hear about the Rituxan fail and having to part with your spleen. It really is a shame with baseline counts as high as yours.

It is interesting that Rituxan crashed your counts. Seems like I've read that about others a few times before. Need to look through my notes on that. See if that implies a particular row in my ITP treatments table.

Yes, a few questions come to mind, LOL. What dose of Pred would hold your counts up to 70? Can you give some detail on how Nplate went - some data on it? How long were you on it, what dose at start and at end/now? I guess you continue to be on Nplate to keep counts up for a laparoscopic splenectomy. Have you ever had Pred/Dex with Nplate?

Would you have a guess about how long you've had ITP? Or, perhaps a blood test in the past that confirmed you didn't have ITP.

Poseymint, as for the vaccines, i had the same concern. There is even a list of meds that interact with the vaccines on the wall at the clinic and rituximab was on it. I asked and was told that it would only affect live virus vaccines. I was on 100mg a day to keep them up. they ranged between 50k and 70k. They went down with the taper. lol, i will absolutely never go on predinose again. 6 months later and i can still feel the adrenal atrophy sometimes. With Nplate, I am usually steady at 60k. In the last 1 1/2-2 months that i've been on it, i had two 30k drops. One was last week and strangely this week, my doctor called and said i didn't need to come get the injection because my counts were good. I have no idea how good, because this is all goes through italian translators and some information that can't get. I have to go up there this morning and get the results. I didn't get any extra meds with Nplate because it mostly kept my counts above 50k, which is Nplate's intended purpose. Nplate has had slightly rough side effects. The limb and joint pain has been a little rough, but luckily Prednisone withdrawal got me use to that. My big fear with Nplate is that a possible side effect is your ITP can be worse after you get off it.As for the dosage of Nplate, I honestly didn't pay close attention. By the time my Italian doctor started me on Nplate the military decieded on surgery. That caused me to switch focus to splenectomy research. The splenectomy will be the last thing the military will try and then i'll most likely be med retired. After that i won't take any meds. As long as my counts stay above 25k and i continue to not have symptoms, i see no reason for it. I have read that some doctors aren't debating even treating people below 30k. No clue on the ITP duration. I can't remember my last labs prior to September. I never go to the doctor. I'm more of a wait it out kind of person. I only went this time because my wife was persistent about it and its pretty easy to get an appointment here. Sorry can't be more help in that department.

Poseymint- Thanks so much for bringing up the Rituximab effect on Vaccines. You were right. I looked into it and then brought it up to my doctor. He had no idea about it. I am still gonna probably have to go with the splenectomy thought.

Droopy - ITP doesn't necessarily get worse after stopping N-Plate. What happens is that the counts can drop to low levels when the drug isn't given which is expected. The patient can move on to another treatment if/when that happens. It doesn't mean that ITP becomes harder to treat. Have you thought about trying Promacta?

With the Nplate, I meant that I've read a couple different places that when you come off of it, your symptoms can be worse than before you started. As for trying other things, its kind of out of my hands because of the military. I would prefer to avoid splenectomy since i have been lucky enough to have stable counts. I will get the splenectomy, if it works (which i doubt) then great, If not i will separate/retire and go from there. If my count is 30k+ then i won't treat. If its drops below, Promacta will be what i lean towards.I think i'm done with Pred/Rituximab/Nplate. Obviously if i drop to dangerous levels, it will be out of my hands. I don't see Nplate as long term because the limb pain it brings and i'm just not happy with the amount of research/data on long term effects. It is still nice to talk it out with everyone here. I'm a little worried about my rituximab treatment 2 months ago tanking my Vaccinations for this Splenectomy. As always, thanks for the replies!

Symptoms can be worse after stopping N-Plate because counts drop down. That's all it means. Then you just get them back up.

Good luck with everything. I know how hard the decisions are!

That is a pretty high dose of steroids with what appears to be a 'partial' response. On the other hand, a stable count of 60 on Nplate sounds good. The reason I asked about Pred (low dose) and Nplate/Promacta is that some folks respond very well with that combination. Perhaps if your doc has delayed the splenectomy it might be a chance to try it.

Whether the splenectomy works or not, it might be good to get a copy of your medical treatments - dosages, dates, counts and such. Nplate especially. If you relapse one day from the operation then what does and what doesn't work, and how well, will make future treatments easier. Or, if you end up leaving then paper in hand with a new doc too will make things easier.

Yea the Pred dose was pretty high for everything i read. I highly doubt he will post pone the surgery. I mentioned the my vaccines being nulled out because of the Rituximab and he said he would read up on it and probably give me a "booster shot". I really don't think that will matter if the Receptors are still to exhausted. He ordered me an extra set of labs for when i get up to Germany (where i'm getting the surgery), so i'm guessing he is checking to see if there are traces of the Vaccinations. All in all, i really don't see him delaying it. As a bonus, we leave tomorrow and my wife just came down with a cold today w/fever. This is not looking like optimal conditions. Either way i'm guessing my parting ways with my spleen on wednesday. For the medical records, i picked up a copy of my labs from the Italian facility and if i do get medically retired I will get a copy of my records. I still count my self lucky, my ITP is extremely mild compared to alot of people, so i'm pretty thankful for that!

Yes Droopy, as you said, I count myself lucky! I go to a cancer center every week for Nplate injections and my ITP is really nothing compared to what people there have to deal with- people even younger than myself. People can live well without a spleen, just be careful. You are smart to educate yourself on all this! Good luck on your surgery! Hope it all goes smoothly, with a speedy recovery and a long remission!

Update: had the splenectomy. Robot assisted laparoscopic splenectomy. The surgery went fine , recovery has been fine. Minimal pain. Now for the downside. As I was kind of expecting, it has had zero effect on me. Platletes went from 116k day of to 60k later that day. Then down to 35k then 21k. Last count was 16k. They are starting me on dexamethasone 40mg a day for 4 days. They have ventured guesses for the drop to the splenectomy taking alot of platletes to know NPlate withdrawal dropping me. I just want to get back up to 40k and I'll be good.anyways I'll update again in a day or so. Hopefully this info will help someone out with some questions.

I'm sorry. I don't buy their theory at all. However, there have been people who initially had low counts after splenectomy and after a few treatments, counts went up and stayed up.

Glad to hear your surgery success Droopy.
I haven't tried to study splenectomy outcomes but my notes on PDSA forum member reports seems to suggest it has a mediocre success rate. Also that one's physiology may have quite a bit to do with it. There was a recent announcement here on PDSA e-news on the subject.
pdsa.org/products-a-publications/e-news/2018-enews/item/1649-pdsa-enews-062918.html
The study identifies these qualities as success predictors:
'
Age, duration of illness before splenectomy, platelet sequestration site, response to steroids and IVIg, preoperative and postoperative PC ...
'

You might want to read through some of 'D.Mann' posts. He developed a debilitating blood clot shortly after splenectomy. It sounded like taking Promacta too soon after surgery may have contributed. Don't really know.

I just saw this study from the PDSA yesterday. In all my years of observing though, I can tell you that anything can happen.

"The reviewed articles used diverse criteria to evaluate patients' characteristics and to report outcomes. However, a comprehensive analysis of all published reports for predictive parameters for the outcome of splenectomy showed that the most reliable predictor is postoperative platelet count. On the other hand, among preoperative variables, younger age and platelet sequestration site were related with response".

learningcenter.ehaweb.org/eha/2018/stockholm/215116/mirjana.mitrovic.predictive.factors.for.successful.splenectomy.outcome.html?f=menu=6*ce_id=1346*ot_id=19068*media=3*marker=167

*Update* after my platletes hit 16k, the Docs gave me some dexamethasone. It has been my go too. They set me up for 4 40mg days. First day I hit 32k. Second day I hit 208k. I have actually read D.Mann's story and that is way I requested to not take the last two doses. I thank you for that D.Mann. I made the trip back to Italy from Germany safely and just got rechecked today. Count is sitting at 265k. I'm not counting the splenectomy a success but at least my numbers are up. I'll give it another couple weeks before I get too excited. As always please let me know if anyone has any questions. Once again a story from this site helped me in that D.Manns story kept me cautious with counts getting too high.

Good luck, Droopy! Keep us updated!

Droopy- I think its a good sign that your counts went up from 208 to 265K even after stopping dexy and after traveling to Italy. Unless you have a pattern of counts continuing to rise after stopping dexa? Just my intuition I think its a good sign. Hope you get a long remission! Yes, be careful of blood clots. There was a 17 year old boy on the forum who got deep vein thrombosis after his splenectomy. Good you are educating yourself- "forewarned is forearmed".

Dear all,
Greating from Mongolia, iam new here, but believe me i have over 30 years of this curse.

First of all i wanna share my life. when i was 5 years old, we moved to summer camp near city. one day i played around outside with my neighbor kids under sunny day, accidentally i bleed and nobody could not stop it. My father brought me kids blood center immediately, we have known only way is chemical prednezilon (i dont know spelling sorry) and spleen removal. My father refused to take out my organ and choose natural way of healing, uses herb treatment, medicine. I used to use prednizelone twice of my entire my life (one is kids blood center in first time and second time in Singapore hospital when i was working-those 2 times i had no choice platelet dropped untill "1", ), result was wonderful. But never forget side effects that weight gain.
quite often my platelet number is around 190.000, i took all exams in Singapore, no genetic (parents) issues and no bone marrow issues.
Through my experience, i uses natural herb medicine during ITP drops (14-30 days), after platelet increase, i stop drinking kkkkkk
Freq wise, my record was 7 years after, now almost 2 years after iam purpura again (fuuuuckkkk), Usually 3-5 years freq happens, So that, my ITP is quite ok-ish, not serious illness think.

So now basic discussion, i do believe IPT is kind of allergy sensitive illness, of course as you know many of reasons overlap one time, so then triggers ITP,
1. For example for my experience, if i lived in wet cold condition (rainy days), that s for sure, ITP triggers
2. More mineral water consumption, specially with bit natural salt (most of Mongolian desert region)
3. cold, hot environment swap- Sauna after go outside, very cold air conditioned room to sunny outside .... etc
4. I dont know, goes to Hong Kong triggers ITP !!!!!! (i transit through 3 times), i do believe food, water etc.... thats why if need to go HK, i uses Bonaqua water or Coca cola etc.... reason why is globally those drinks produces one standard.
5. I hate oily, fatty food ---oil free guy
6. I was heavy smoker and drinker kkkkkkkkkkkk (now i quit smoking because smell is not good in office environment)
7. I used to train Taekwondo and now plays bascketball
8. I working at world 2nd big copper mine site (condition is full of chemicals, i do believe) seems ok, After 1 year it triggers ITP again.
9. It seems, i got food sick last week, cause was sandwich with sausage- vomit 3 days and diarrea. iam suspecting this poison triggers again (fuuuuckkk)
(good thing is i got my medicine xixixi )

I got many news, ideas took from this web last 2 days. never thought about GLUTEN INTOLERANCE and CANDIDA OVERGROW, B12 deficiency, Celiac disease. THANK YOU GUYS. i gonna go for those examination soon.

PS: my natural herb medicine is 'GAGUL-9, or GAGOL-9 (9 ingredints)' Tibet spleen medicine. one strange thing is during my ITP, i checked enlarged spleen test many times, every time it was OK, But still uses spleen medicine for short term when triggers ITP

After one day, my "kill the ITP" progress goes like following (because i work roster job in mining, no hospital, no pharmacy, i can not tell my fellow co workers duhhhh !)
1. When i see rush on my skin, i immediate start my medicine with C vitamins
2. got aloe vera, energy drinks (red bull, Koeran imported aloe) from supermarket and mixed with water, drink without any doze.
3. I always snap on my arm 20 times (for new rush) every day and different areas, control how its healing, or going bad, when ITP triggers. Today all my hurt area (20 snapped) are getting blur, its good sign, yahooo !
4. After work, i will get C vitamins and my herb medicine.
5. From today i chose Gluten free foods. i dunno but seems my gut getting shrinks back (just my thought kkkkk)
By the way, my work is roster FIFO (flight in, flight out), i will depend on all my own like; Robinson Cruzzo.

Nothing impossible and Just do it !

Whelp, crashed from 250k to 73k in about a week. I think it's safe to say the splenectomy had no effect. Now I just need to seeing where my resting count is. Hopefully it is still around 30-40k. If so, then I'm good to go. I will be medically retired so I won't have to do any more treatments as long as my counts stay above 30k.

Sorry to hear that, Droopy. Please keep us updated. It's a shame that this has affected your career.

Bagal - good luck with the new diet! Let us know how it goes. I'm not too keen on the Red Bull idea - that stuff is wicked!

Also, as much as I enjoyed your colorful story, please try to refrain from swear words. :whistle:

G'day all,

every day iam consuming gluten free diet (at least trying) and now no more purpura s on my skin, danger zone gone, i guess,

reason why i have energy drinks is its contains B6 and B12. if ITP triggered by B12 deficiency or cealic disease,i hoped it will help
here is point, i have never seen 2-3 days after purpura disappearance. i think, gluten free diet and energy drinks helped for.
I gonna continue use energy drinks and Vitamins as much as possible.
There is says, energy drink contains 6 times higher than every persons daily consumption. so that every drops can be urine. that is why i mixed with water and drink entire day.

BR
Bagalzuur

There are B-6 and B-12 vitamins which would be much healthier. I'm glad your symptoms are gone.