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18 Oct 2019 15:08
  • GrouchoMarx
  • GrouchoMarx
Thank you Margaret for the information. Well noted and considered. Hope at least it starts working with me without colateral damage. The dose once I found out it works will be my next concern in the agenda. 11 days after I took the first pill I will have a test. Important one. I hope I have a bit of increase to keep the hope. However for some people it took 3 or 4 weeks to go up in the count. Will all keep u update.
18 Oct 2019 20:16
  • b2h
  • b2h
Novartis has a patient assistance program and if you qualify will send you Promacta at no cost. Have you looked into that?
18 Oct 2019 20:47
  • ManifestMe
  • ManifestMe
Hey Hal! Thank you for the reply once again! 4th round of Ritux on 10/16/19 went just fine. So glad to be done with it!!!! It went super quick which was nice! Hopefully I see some good results! It would be a bummer if it were for nothing but hey! Counts were 296 on 10/15/19. I’m still tapering so I’m currently on 60mg pred. I start 50mg tomorrow. The taper is going okay but ehhhhhhh I just wish I could sleep lol! That has been the hardest part so far. I don’t think I ever mentioned my age, not that it really matters but I know when I was first diagnosed I found it nice to know peoples experiences and ages and such. I’m a 27 year old female. Lol! Well wishes to all of you! Hope everyone is doing okay.
19 Oct 2019 03:37
  • mrsb04
  • mrsb04
Great counts. You have my deepest sympathies with the Pred. I was manic and simultaneously exhausted. It got better once I got below 15mg/day.
19 Oct 2019 04:51
  • drbean7218
  • drbean7218

b2h wrote: Novartis has a patient assistance program and if you qualify will send you Promacta at no cost. Have you looked into that?

Any details? Can I apply it even I live in Hong Kong?
19 Oct 2019 06:17
  • ManifestMe
  • ManifestMe
Haha! Thanks mrsb!!! The sleeping is so bad that I asked for sleeping pills at my last appt but the sleeping pills don’t keep me asleep either (only tried them for 2 days) which is frustrating. They prescribed Trazodone for sleep and I feel like I sleep the same. I don’t have a problem falling asleep I just end up waking up every night and only getting between 3-4 hours. The exhaustion stuff is so weird like my body has never felt this off. It almost feels like when my counts are super low when I get so exhausted due to lack of sleep. It’s the weirdest feeling and it definitely impacts daily life. My eye is super twitchy now as well I feel like it won’t go away. But as you said mrsb this is going to be a journey so I’m prepared lol. Thank you for your well wishes mrsb! I hope you are feeling great!!! And thanks for all the advice you’ve given to me.
19 Oct 2019 10:42
  • b2h
  • b2h
I would think that since you are able to access the medication there should be something, but unfortunately I don't know. Perhaps look here: www.novartis.com/our-company/global-product-portfolio?sort_bef_combine=title+ASC&sort_bef_combine=title+ASC&combine=promacta
I didn't see Hong Kong in the drop down list, but I would contact them.
19 Oct 2019 10:48
  • JJ
  • JJ
My suggestion is to see a haematologist who is experienced in treating ITP. The dose of prednisone you are taking is very high for ITP which suggests that the prescribing doctor isn't all that experienced. Apart from that look at the available treatments and learn so that you can advocate for yourself, and don't let them take your spleen.
19 Oct 2019 12:20
  • DeeDee Marie
  • DeeDee Marie
Dr. Bean,
I would look into it--but I wouldn't count on Norvartis unless we qualify for low income. When I was sick in 2018, my doctor "begged" me to take
Promacta and even gave me a two-week supply (which wouldn't help unless I decided to start paying for it). Norvartis is not noted for always being overly
generous. I did a photo shoot for them for a commercial in 2017 for ITP stories. They worked me so hard that I was sick for a week. They wouldn't even give me a "break" during the four hours. When I saw the video, I looked "deathly" sick and asked them to pull it. There were also some other personal things they did to me that I don't want to mention here. You can see the videos when you go to their ITP site--but mine isn't there.
Dee Dee
19 Oct 2019 17:27
  • camperguy65
  • camperguy65
September 2019 blood clot in lower Aorta. Piece broke off near right leg amputation. Possible cause overdose of NPlate or Dexomethizone, plus 500 mcg NPlate spiked my platelets to record high above 967. Had Aortic stent placed to eliminate clot, and a lower leg Fasioctomy to save my leg. Now have been on 200 mg Tavilise, but it seemed to work up into 500 count first two weeks now no response to it. Upping dosage to 300-350 mg. History: 4 years Chronic ITP. Steroids work as rescue only for me. IvIG woks for 2+ weeks, Rituxan worked for 16 months one course out of three separate courses, then failed. Promacta had zero effect for me. NPlate is still the only med that so far gives me platelets. Tavalise the new drug (experimental more or less) stopped working for me two weeks after starting it. Still have my Spleen. PS the surgeons who saved me have me on Eliquis blood thinner now as long as I'm above 30 counts to prevent anymore clots. I go below 30, and stop the Eliquis thinner (5mg twice daily).
19 Oct 2019 18:00
  • b2h
  • b2h
Are there any grants in Hong Kong? Non-profits that help people pay for medications? In the US there are some.
19 Oct 2019 18:17
  • camperguy65
  • camperguy65
First, and unfortunately, ITP is so rare and is barely known by any of the MDs. I've had several Hematologists/Oncologists, and out of all of them they were lucky if they had one other single ITP Chronic patient. ITP can be acutely caused by an infection, or H. Pylori in the gut from raw fish. Japanese get it much more than Westerners. If you are young under 50 and no family history of chronic Immune diseases like Lupus, Socratic Arthritis, and others blood disorders, etc. You may just be temporarily down due to even a drug or med you take regularly like chronic Ibuprofen takers which can destroy your platelets. I have a young cousin who in her twenties took Ibuprofen everyday over the counter and had her platelets down into the 20s. They recovered once she got off the Motrin, etc. The most surefire way to know is prolonged platelets in the low numbers, and a bone marrow biopsy which shows if your bone marrow is producing platelets normally, but something else like your immune system is destroying them prematurely. If you do ever have a biopsy done, and the Dr. works in the local very well before he begins, it's a painless test. Felt nothing but him pressing down on my back a bit. My mother's side of the family has extensive immunology problems, and unfortunately, I have inherited as well. We all have different chronic severe conditions. Hopefully, if you have ITP yours will be milder and more manageable. Mine is severe, and I only have one drug that works for me after having tried all the others. Nplate its called which boosts platelet production in my marrow (though mine was still normal) thereby outnumbering and overwhelming my destruction rate. NPlate = Attrition: So many produced my immune system cant deplete them fast enough, but I got a huge spike in my platelets last month above 970, and got a blood clot in my lower Aorta that also went to my lower leg. Had to have a stent placed to trap the Aortic clot, and have my leg opened up to relieve swelling from Compartment Syndrome, or they would have had to amputate my leg. As I'm sitting here, my leg is still open incision 3"x7 " long. 8 more weeks, until it should be finally closed. ITP can be fairly mild and manageable for many or even most, but I'm on the extreme end of the spectrum. For some it even vanishes if you're younger. I have been on every kind of ITP specific medication to date now including the latest 2018 Tavilise, which has failed me. It worked for two weeks then nothing. Steroids and NPlate are all that continue work for me long term. I've had IVIGs, Rituxin chemo drug (worked one time for 16 months then never again after two more tries with it). Promacta did nothing for me either. I do still have my spleen ( being talked about now - they throw stuff at the wall to see if anything is left for me that sticks at this point). Spleen removal is only effective in like 24% of those who elect it. Spleen is primarily where the platelets get destroyed, or sucked up. It's the oldest treatment when they discovered it in like 1920, etc. It can fully cure some but not many, but you forfeit your immune system losing your spleen. Some statistics will say you are more likely to die from Pneumonia or infections after a Splenectomy than from ITP FOR MOST. It's been a very rough and aggressive diseases I never had any input to choosing in my life. Don't let me discourage you. Most have milder situations that can usually be managed with the existing ITP meds. There are so few of us, that it's very hard to get funding to find a cure, or a really good drug. It's not a money maker drug like Viagra, or they'd funded it and figured it out long ago. There are only like 40,000 females in the US chronic, and 20,000 males chronic. 60-70k population reporting Chronic ITP, so it's rare and not much research money base, except for the US govt declaring it an orphan disease to get some small grants for it to research a little, etc. As for me, I may be heading toward more aggressive forms of imunosupressive treatments like cancer patients transplant recipients. etc. to destroy parts of my immune system or suppress them from killing my platelets. Getting to that phase it seems. Don't be discouraged though, like I said, I'm the extreme end of the spectrum now. Wish you the best. Regards
19 Oct 2019 18:45
  • mrsb04
  • mrsb04
19 Oct 2019 18:49
  • MelA
  • MelA
Yes, you all please keep your bad weather to yourselves!! Although I'm hearing we may get snow again on Thursday.
We could use some moisture but not in the form of rain like you mrsb or snow like you Christine! A nice little rainfall overnight would be appreciated (picky aren't I :) )

Cindy did you get up to Rockwood Park?
Category: Social Chat
19 Oct 2019 19:25
  • amlucki
  • amlucki
Thank you for your response I noticed excessive bruising back in April when I started going to the gym and I blew it off then in July I cut my finger and had to make a trip to the ER they had trouble getting my finger to stop bleeding they asked then if I had always bled like that I told them no and they never asked anymore about it well my finger formed a cyst and I had to have surgery in Sept well they did pre labs and my platelets were at 12,000 they did the test again and it was the same 12,000 they did the surgery and recommended I see my PCP well a week later I followed up with my PCP and my platelets were at 10,000 so he referred me to a hematologist they had me go straight to the ER and my platelets then were 15,000 and they did a platelet transfusion the next week at my hematologist appt they were at 22,000 so they started me on 100mg prednisone after two weeks my platelets were up to 65,000 they have now lowered my prednisone to 50mg a day I go back in two weeks they’ve also checked my spleen which is normal so far all blood work is normal I am 36 and I am not on any meds other than birth control I do have family history of Lupus I had an uncle that passed from it. It has just been thrown at me and they just keep saying ITP so I started researching and came across this forum which has been so informative and I really appreciate it!
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