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  • julia
22 Feb 2010 15:22
Replied by julia on topic Please help me!! I'm SOOO scared..
I found eating cooked broccoli and raw or warm spinach everyday helped too. They are naturally high in vitamin k and naturally tasty. Vitamin k is supposed to help with clotting.
Julia
  • hairball01
22 Feb 2010 11:06
Replied by hairball01 on topic DVT -Deep Vein Thrombosis
APS has never come up in any coversations......yet, but I will persue the concept. As the clot was diagnosed 7 days ago, it's to early to tell. The earlier 14 week N-Plate regimen produced wild unpredictable results, once with a 200k jump within a week. I did have an episode of periferal thrombosis-left foreare, 3 months ago and during that time I was on N-Plate. There are just no 'black-and-white' answers on these problems..........
  • hairball01
22 Feb 2010 10:57
Replied by hairball01 on topic DVT -Deep Vein Thrombosis
N-Plate came up in the discussion as a possible cause, but I've been very active remodeling a house and I sometimes tend to abuse myself in the process. But I will investigate the APS option.
  • tacmom
22 Feb 2010 10:02
Replied by tacmom on topic Rheumatology Appointment
Ann-Caitlin is 11, but she will be 12 on April 2nd. I wish I knew if they tested her for the JC Virus, but I don't. All I know for sure is that they did run a test to make sure there is no evidence of Hepatitis B in her before they start the Rituxan on Wednesday. I am planning to get Caitlin's work in advance if they will let me and I also will have some work to do. I'm really good about staying caught up so I don't have too much to worry about when I get home. I think I recall that you are an SLP, and my job is somewhat similiar in where I pull students out of class and work with them one on one so it really doesn't involve grading papers. Just writing reports on testing that I do with them (Part C's-Communication Report) and a few other informal tests that I'm required to do each year with every student. I truly hope Caitlin's infusion is uneventful and works as well as it did for your Caitlin! :) We will be thinking of you when we come on our trip to Florida this summer. Going to Cape San Blas the 1st week in August and that is when the baby sea turtles are supposed to be finding their way into the ocean...I hope we see some! :)
  • lili
22 Feb 2010 09:59
Replied by lili on topic Platelet Update
Hi Lauren,

You might get away with this 10 mg drop. I usually don't have much trouble with withdrawal symptoms until I get down to about 10 mgs, so with any luck it won't be too bad. Dropping lower than 10 mg, I usually take really slowly because that's when the symptoms get bad.

You're lucky to be able to get the NPlate. I hope it works well for you. It sounds much more tolerable than the pred.

Lily
  • tofer
22 Feb 2010 09:37
Replied by tofer on topic Happy Birthday Kim!
Happy Birthday Kim!!!! :kiss:
  • tofer
22 Feb 2010 09:20
Replied by tofer on topic Please help me!! I'm SOOO scared..
Joya
I know it seems like forever you are an athlete and the thought that you might not be able to depend on your body is very scary. You should take some time...read all that you can about treatments. You seem to be getting good results from the steriods you should take advantage of that time and listen to what others say. Having your spleen removed at your age is a huge step.

Read Read Read open a search engine look up the words you dont understand, and read some more.. Eat well, sleep, and allow yourself to heal. As long as your body doesnt hurt too much to dance then DANCE. Just be careful doing things that you might get cut doing... you know dishes, cleaning house...<giggle>

I have survived 10 years with a lower than NORMAL count. Mine is about 35k and stays there most of the time. I work, drive, even do dishes <yuck>.
I have found that pineapple juice helps the bruises break up faster. Wont stop them from coming but helps them leave faster...
  • isaacsmom
22 Feb 2010 08:44
Replied by isaacsmom on topic Happy Birthday Kim!
Happy belated birthday Kim!!!
  • Joya
22 Feb 2010 08:08
Replied by Joya on topic Please help me!! I'm SOOO scared..
Hello Sandi, thank you very much for all the information! Ofcourse I read a lot already but this was very clear! It does make me feel like a splenectomy would be something to consider if the Prednisone doesn't work. But maybe me counts will be okay for a while so I just have to wait and see..

Hello Cyrano, thank you for the information but I have no problems with nosebleeds.. I never really had anything but severe bruises.. I bruise very easily and before I went on my meds I used to have at least 10 bruises on my legs.. Sometimes as big as 15 centimeters.. I can't even remember ever having a nose bleed so that is not an issue for me.. But still I'd like to thank you for taking the time to type me your message!! :)

Joya
  • snowgoose
22 Feb 2010 05:13
The count for today is............748, hopefully on the way down, but I won't count my chickens before they hatch! ;)

Marcus, They did not give me anything prior to surgery apart from the Intragram infusion, and my trial dose of Eltrombopag.

Julia, We don't have Walnut Whips here. I don't blame you for taking the Walnut off, I don't like them either! There is a big fuss here at the moment as people are demanding that the Cadbury Creme, which is now made in the UK, be brought back to NZ, and made here. The people just might win, as they did late last year when Cadbury blocks, were made using palm oil.The public protested and the company surrended, and reverted to cocoa butter. :)

I searched on the old forum for Lib and high platelets, and you were right she did have a very high count on Nplate. Thank you for that.

Mine, however is a combination of the trauma of surgery, the intragam, the infection in the operation site, and the Eltrombopag.
  • mirzam_nimu
22 Feb 2010 02:09
Teenage ITP: been there done that was created by mirzam_nimu
21 year old with chronic, recurring ITP, endured ITP through many of my adolescent years (along with awful anemia). Ask me anything!
  • Cyrano
21 Feb 2010 23:33
Replied by Cyrano on topic Please help me!! I'm SOOO scared..
Try Vitamin K. I used to have nosebleeds at a minimum dayly when the season changed in fall and spring, for about 2 months. I happened to see something about Vitamin K in the "Eat right for your (blood) type" book and gave it a try. For 2 years, during the critical time i took Vitamin K. Now I don't even need to do that anymore. My brother in law was recently diagnosed with ITP and started having nosebleeds... so right away I gave him some and it seems to have stopped his bleeds. :) I don't know if this will work for you but what have you got to loose except your nosebleeds? No cauterization! No wads of cotton up your nose, etc.

Best way to stop one once it starts is pinch you nostrils for about 5 - 10 minutes. My life with nosebleeds started around age 9 - it seems like i was bleeding forever and the doc tried everything... finally he says have him pinch his nostrils for 10 minutes. It worked! ??? what the heck. why didn't you start with that! :blink: If you don't have itp only a couple minutes is required, with itp it may take as long as 10.

OK I hope that's helpfull. B)
  • lucidawn
21 Feb 2010 23:27
Replied by lucidawn on topic Rheumatology Appointment
Yeah, neurologists use beta blockers to treat migraines. I took one for a while, for headaches, but stopped because it interfered with my workout, lol. I could not get my heart rate up at all. Speaking of workouts...I need to get back in the gym.
  • Kim
21 Feb 2010 22:46
Replied by Kim on topic DVT -Deep Vein Thrombosis
I've had DVT's and PE's with APS, ITP and lupus. I required anticoagulation, regardless of platelet count. I clotted with only 14k platelets, due to APS. If they do not know why you clotted, I would suggest more testing, but even with testing, that does not mean you'll get a positive APS autoantibody. I clotted 2 times before a third clot and finally getting a positive APS test. I was put on anticoagulation twice previous, but since I had such low counts they figured I'd be protected from another clot if I didn't treat the low counts. Ha...clotted at 14k. you'll probably need anticoagulation if it's APS and you should be tested more than once, if you don't test positive.

If it's from high counts with NPlate, not sure what they do about that, except take you off NPlate, or manage the counts better.

Did the clot completely dissolve?
  • wildroseao@aol.com
21 Feb 2010 22:36
Replied by wildroseao@aol.com on topic Rheumatology Appointment
Hi Pauline-

I do try to keep up with the board and your Caitlin's continuing saga. She's how old now? I do wish there was more info on how kids respond by age to Rituxan; I don't think the re-do of the Rituxan Scoreboard ever really took off. Have you seen the original? I've seen mostly pre-teens and up do well with Rituxan, though there have been a few younger successes that have posted here. Did they test for that JC virus among all the bloodwork they've done?

If this works for your daughter half as well as it has worked for mine, pokes and doctor appts., half-days and headaches will drop WAY down there on the frequency meter! Lay in a good supply of movies and tunes for her, and take a book (or your test papers!) for you. Remember-slower is better! At 120 lbs or so, my Caitlin's took all day, each time.

May Day 1 be nothing but BORING, and may you see speedy results! Then, Caitlin can go :silly: and :woohoo: to her heart's content, and you won't even flinch! To infinity and beyond with those platelets, girl! Ann, Caitlin's (22) Mom
21 Feb 2010 22:20
Replied by on topic NEW TO ITP
I've got problems with the L4 & L5, problems with the sacrum - many years after ITP diagnosis. Mine have nothing to do with herniated disks or rotated disks.

Could your symptoms be from the problems you are having with your work injury?
  • Sandi
21 Feb 2010 21:44
Replied by Sandi on topic DVT -Deep Vein Thrombosis
Hairball:

Does your doctor think the DVT was due to NPlate?

Another possibility is APS. Supposedly, 40% of people with ITP also have antibodies that can cause clots. Do you know if you've been tested for that? I have had the antibodies off and on for years, but have not yet had a clot.
  • hairball01
21 Feb 2010 21:34
DVT -Deep Vein Thrombosis was created by hairball01
Been trying for the last 5 years to keep the count up and then "DVT". One doc got me on anti-coag's to prevent futher clotting and my Hemo Doc just upped my Prednisone dosage to boost the platelet count. I recently stopped the N-Plate, and just finished the 4-week Rituxan regimen with high expectations. Anyone had similar DVT experiences?
Hairball01
  • dbishop
21 Feb 2010 21:01
Replied by dbishop on topic 21 month old with ITP
When i first came to this forum i felt the same way. But now I don't know what I would do without being able to talk to those who are going through the same thing. I know it's scary to read about all the different treatments but the realitly with ITP is that everyone responds to it differently.

My little guy is almost 2 and a half and this is his second bout with ITP. The first time it was short lived and he was treated with IVIG once and for over a year he had high counts. In nov 09 i noticed the unusual bruising again and knew that it was back. This time is a bit more difficult because emotionally because his counts go up and down. His last cbc was two weeks ago and his counts were at 129,000 but right now he has a lot of bruising so i know that they have dropped to low numbers. We too are doing the watch and wait approach and so far we have seen some very good numbers and some not so good numbers. I agree with Ali that the treatments themselves can be very tough on the kids, when Devyn got the IVIG infusion, my heart broke and i don't ever want to see him have to go through that again but the reality is that he may have to one day. Through out this past few months Devyn has still been his happy go lucky full of energy self. so it's hard to say how ITP really makes them feel. But as many parents have said on here the biggest complaint is that they feel tired. So i'm sure he is not in any pain.

My biggest words of advice is to go with your heart on this one, if your not comfortable with te wait and watch approach then definitly talk to your Dr. You will have moments where the worry is overwhelming and that is when i find this forum is the most help to me. You will gaet lots of great advice from the parents on here.

Take care
Deanna
  • HEATHERMASSA
21 Feb 2010 20:45
Replied by HEATHERMASSA on topic NEW TO ITP
THANK'S FOR THE INFO . I WILL TALK TO THE DOCTOR . ; )
  • Sophie
21 Feb 2010 20:11
Replied by Sophie on topic NPlate
I've just started Nplate (on 2/15) and I've had some bone and joint pain (nothing too severe, or lasting too long and mostly in the evenings) and a couple mild headaches. Tylenol and a heating pad have done the trick for me. I'm also still on a high prednisone, so I don't know what meds are causing which side effects.
  • Sandi
21 Feb 2010 20:01
Replied by Sandi on topic Please help me!! I'm SOOO scared..
Joya:

Here is the most current information regarding splenectomy:

Splenectomy. Eighty percent of patients respond to splenectomy, and response is sustained in 66% with no additional therapy for at least 5 years103–105 (supplemental Document 8, Recommendation Box 6). Many patients without a complete response can still expect a partial or transient response.15,106 Approximately 14% of patients do not respond and approximately 20% of responders relapse weeks, months, or years later103 (evidence level IIb).

Complications of splenectomy. Complications of splenectomy include bleeding, infection, thrombosis, prolonged hospitalization, readmission to the hospital, and requirement for additional intervention.104 Reported complication rates vary considerably30,103,104,107,108 and may be greater in patients aged 65 years or older.29 In a recent systematic analysis, splenectomy complication rates were 12.9% with laparotomy and 9.6% with laparoscopy; mortality was 1.0% with laparotomy and 0.2% with laparoscopy.104

Because ITP22 and splenectomy109 are both associated with thromboembolic risks, ITP patients should receive appropriate postoperative thromboprophylaxis.

Predicting response to splenectomy. There is no widely accepted test predicting response to splenectomy. Response to oral corticosteroids or high-dose IVIg has a low predictive value110,111 (evidence level IIb). Indium-labeled autologous platelet scanning may be the most sensitive predictor of response to splenectomy, but here too studies vary.112,113 When scanning reveals splenic platelet destruction, approximately 90% of patients respond to splenectomy.112 This test is currently limited to several research centers, but if available may be useful before splenectomy (evidence level III, grade B recommendation).

Accessory splenic tissue (evidence level III/IV). Imaging techniques show accessory splenic tissue in up to 12% of splenectomized patients and almost all is removed during surgery.114 In patients who relapse following an initial response to splenectomy, assessment for accessory spleen should be considered. However, in patients who never responded to initial splenectomy, response is extremely rare.42,115

Prevention of infection after splenectomy. Splenectomized patients are at lifelong risk for uncontrolled infection with a poor outcome from Streptococcus pneumoniae, Neisseria meningitidis, and Haemophilus influenzae.116,117

Patients are usually given prophylactic polyvalent pneumococcal, meningococcal C conjugate, and H influenzae b (Hib) vaccines at least 4 weeks before (preferably) or 2 weeks after splenectomy and revaccinated according to the country-specific recommendations (evidence level IV).118,119 In patients who have received rituximab in the previous 6 months, vaccinations may not be effective. Vaccination for these patients should be readdressed once B-cell recovery has occurred.

In some studies, asplenic patients were given long-term antibiotic prophylaxis (phenoxymethylpenicillin 250-500 mg twice a day or equivalent, or erythromycin 500 mg twice a day).120 However, the benefit of lifelong antibiotic prophylaxis is unproven121,122 and the risk of late infection is quite low, and therefore no consensus has been reached.123

A practical policy is for splenectomized patients to have a home supply of antibiotics (eg, penicillin VK, erythromycin, or levofloxacillin) for use in case of a febrile illness. Patients should be educated about the risk of postsplenectomy infection, including the need to go to the emergency department if fever higher than 101°F (38°C) occurs. In addition, cards should be carried to alert physicians that the patient is asplenic; some patients may wish to wear alert bracelets or pendants.

bloodjournal.hematologylibrary.org/cgi/content/full/115/2/168
  • Sandi
21 Feb 2010 19:50
Replied by Sandi on topic Please help me!! I'm SOOO scared..
Joya:

You'll figure it out. It takes time to accept this and find a way to deal with it. You will.
  • Sandi
21 Feb 2010 19:47
Replied by Sandi on topic NEW TO ITP
Hi. I have a few herniations in the cervical spine, but it's not related to ITP in any way. Have you tried treating to get your counts up for the epidurals? A few days of Prednisone might do the trick and help your pain in the meantime.

I tried the epidurals...it didn't work at all. I had maybe two days that were a bit better after it was done.

As for the other symptoms, you should talk to your doctor about those. Could be other autoimmune issues.
  • HEATHERMASSA
21 Feb 2010 19:35
NEW TO ITP was created by HEATHERMASSA
I HAVE JUST BEEN DX WITH ITP. MY PLATELETS HAVE ALWAYS BEEN IN THE THREE HUNDREDS. I WORKED IN THE MEDICAL FIELD FOR THE LAST 15 YEARS AND HAVE ALWAYS HAD MY BLOOD WORK DONE EVERY YEAR. IN DEC OF 09 MY PLATELET COUNT CAME BACK AT 90 .I WENT TO A HEMATOLOGIST IN JAN 2010 AND HAD BLOOD WORK DONE . MY PLATELETS WENT BACK UP TO 134. WHICH WAS GREAT BECAUSE , I WAS INJURED AT WORK IN MARCH OF 09 AND I FINALLY WAS APROVED FOR EPIDURALS TO THE THORACIC AREA . I HAVE MULTIPLY HERNIATIONS IN THE THORACIC SPINE AND DAY BY DAY THE PAIN HAS BECOME WORSE. THEN ON TOP OF THAT I WAS DX WITH ITP. NOW BEFORE ANY TYPE OF PROCEDURE I HAVE TO HAVE MY PLATELETS CHECKED. I SCHEDULED AGAIN FOR EPIDURALS AND I CAN NOT HAVE THE PROCEDURE DONE BECAUSE MY PLATELETS ARE LOW AGAIN . SO I SIT HER IN PAIN.

I WAS WONDERING IF ANY ONE HAS HAD MULTIPLE THORACIC HERNIATIONS AND ITP ? IF THERE IS ANY LINKS TO BOTH CONDITION . I HAVE BEEN VERY HEALTHY ALL MY LIFE UP UNTIL NOW.

MY SYMPTOMS ARE DIZZYNESS TIERD ALL THE TIME BODY ACHES ,TINGLING ,SWELLING IN BOTH HANDS . I ALSO HAVE HAD BACK SURGERY AT L5 S1 THREE YEARS AGO AND THE SITE IS ALWAYS BRUISING REALLY BAD .
SO PLEASE LEAVE COMMENTS OR IF YOU HAVE THE SAME SYMPTOMS PLEASE CONTACT ME .

THANKS
  • Sandi
21 Feb 2010 17:33
CHAT ROOM AVAILABLE was created by Sandi
Hello everyone! The Chat Room is now ready! I've tried it and it's nice and quick.

To get there:

Sign on and go to Join the Community. On the left, inside the purple area, you will see PDSA CHAT. Click on that and you are ready to go.

There are some neat buttons on the bottom of the chat page. Make sure you are scrolled down enough to see them.

:woohoo:
  • youngjoan
21 Feb 2010 17:26
Replied by youngjoan on topic ITP and Pregnancy
PDSA has a very nice booklet on ITP and Pregnancy. You can find it under the Products and Publications section/Free publications.
  • Joya
21 Feb 2010 16:06
Replied by Joya on topic Please help me!! I'm SOOO scared..
Hey Everybody,

Thank you so much for the quick and sweet responses! It feels great being able to talk to people who are going of have goon threw the same things as I am at the moment.

At the moment I am on my last two days of dexamethason and I have a new check up in 2.5 weeks. If my counts are still up by then I'll have to do regular checks to make sure they stay up but if they fall again the doctor wants me to try Prednison. I'm defenitly going to read more about Rituxan. It is a little bit difficult for me to read the iformation in English. My English is pretty good but I am to familiar with all the medical terms so I'm going to try to find the information in Dutch..

My biggest concern with having ITP is the waiting. Not knowing how what my counts are. I know it is possible that after this term of dex I'll be able to keep my counts up without medication. The thing is nobody knows for how long. I just do not know how to life with that uncertainty.. My counts have proven to be able to drop from a very good level to none in a week time and I am so concerned that my counts will drop in between two check ups. And I am the kind of person, ting always happen to me! I always fall during practise of get kicked or get a ball to my head. And i do sports 5 days a week. All kind of sports basketball, volleybal, football, dancing, american football.. This is al included in my study.. And apart from that I work in a gym teach aerobic classes and dance 10 hours a week next to school.. (at the moment I had to give up dancing because it was impossible to do with the medication)..

The ITP is constantly in my head.. Don't fall you do not know how high your counts are.. Watch out for that ball.. Don't pump into somebody.. It's making me paranoid and I just do not know how to get my mind to stop thinking about it 24/7..

My doctor agreed with me that this is not something I can really fit in my lifestyle and he is very open to my thoughts wich is great. Ofcourse he told me he would not get my spleen out any time soon.. He really wants me to try the Prednison first if my counts drop again.. (Wich I am really not looking forward to..) I know maybe I'm thinking to far ahead.. Maybe my counts will be fine for the next few months.. But I just can not stop thinking about it..

I talked to my mom about the different treatment options and we decided that I will try the perdnison at least ones.. And if this does not work I will get a second opinion to get the prespective of an other doctor.. I know it might not help to get my spleen out but if it does it would give me a much safer feeling to life my life and do the things I want.. Maybe it is just a mental thing.. Living my life knowing my counts might be low.. I just do not see how I can do that..

I just wished there was a way of messuring my counts at home.. That would make it all so much easier for us all.. If we could just messure our counts when ever we felt like it we could life our lifes being sure we are not taking any risks with our lifes!

Thank you all so much for the support it is really making me feel so much better knowing there are people out there that are willing to help me dealing with all of this!! I can not tell you enough how much better it makes me feel reading all your responses!!

Joya
  • Sandi
21 Feb 2010 11:59
Replied by Sandi on topic Rheumatology Appointment
Yes, it's BP medication and yes, it's dangerous to stop taking it. Don't do that!

I hope Caitlin does okay with Rituxan too~ good luck!
  • cindyduncan
21 Feb 2010 11:51
Replied by cindyduncan on topic colonoscopy
nothing up in there :)
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