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Looking for more wholistic answers to dealing with ITP
Hi, I am newly diagnosed since Aug. 2022 with ITP and have had two crashes with platelet levels in the single digits twice now. Last week they put me on a short dose of dexamethasone which helped and now I am getting Nplate injections weekly for a month. From everything I have read, I cannot find
Hi, I am newly diagnosed since Aug. 2022 with ITP and have had two crashes with platelet levels in the single digits twice now. Last week they put me on a short dose of dexamethasone which helped and now I am getting Nplate injections weekly for a month. From everything I have read, I cannot find
bonandmick
in
ITP Support Association
2 years ago
Covid-Induced ITP Recovery Questions
At the end of August 2022, I was diagnosed with covid-induced ITP. I only caught it because all my extremities were covered in little red dots (petechiae). I made a freaking-out visit to the ER, and they diagnosed me after they did labs and my platelet count came back 0. All these weeks later (October
At the end of August 2022, I was diagnosed with covid-induced ITP. I only caught it because all my extremities were covered in little red dots (petechiae). I made a freaking-out visit to the ER, and they diagnosed me after they did labs and my platelet count came back 0. All these weeks later (October
thestrugglebus
in
ITP Support Association
2 years ago
LOW PLATELETS 27,000
desperately seeking advice My dad has had his 3 round of xofigo , was scheduled for his 4th but platelets are at a 37. He is now in the hopstial they are at a 27. His HGB is 8.1 We are doing the papaya leaves - trying to rebuild All the other platelets stimulants I have read about on here, the
desperately seeking advice My dad has had his 3 round of xofigo , was scheduled for his 4th but platelets are at a 37. He is now in the hopstial they are at a 27. His HGB is 8.1 We are doing the papaya leaves - trying to rebuild All the other platelets stimulants I have read about on here, the
danyelpolo
in
Advanced Prostate Cancer
2 years ago
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Xofigo paused
good afternoon - desperately seeking advice My dad has had his 3 round of xofigo , was scheduled for his 4th but platelets are at a 37. he has gotten blood transfusion last week, they were at a 70 , now we are at a 37 We are doing the papaya leaves - trying to rebuild They will not transfuse till
good afternoon - desperately seeking advice My dad has had his 3 round of xofigo , was scheduled for his 4th but platelets are at a 37. he has gotten blood transfusion last week, they were at a 70 , now we are at a 37 We are doing the papaya leaves - trying to rebuild They will not transfuse till
danyelpolo
in
Advanced Prostate Cancer
2 years ago
Long term prednisone use
I have been on various doses of prednisone for one year now to help control my ITP. My hematologist has tried Promacta and prednisone. When my prednisone dosage was down to 5 mg with 75 mg of Promacta my platelet counts tanked. Presently I am on NPlate and 10 mg of prednisone. Has anyone who has
I have been on various doses of prednisone for one year now to help control my ITP. My hematologist has tried Promacta and prednisone. When my prednisone dosage was down to 5 mg with 75 mg of Promacta my platelet counts tanked. Presently I am on NPlate and 10 mg of prednisone. Has anyone who has
hiltonhead
in
ITP Support Association
2 years ago
Nplate hair loos
Hello everyone, I have started nplate and I am losing hair and thinning hair so much does it stop and hair regrow after nplate treatment ends . Thanks Male 18 years old
Hello everyone, I have started nplate and I am losing hair and thinning hair so much does it stop and hair regrow after nplate treatment ends . Thanks Male 18 years old
Steven_77
in
ITP Support Association
3 years ago
Covid positive, fooled by cold symptoms (just forwarding information)
Good day to all, I’d just like to put some information here. I’m double vaccinated with the Pfizer vaccine. I have Nplate treatment every week so I’m tested regularly for covid. Wednesday 25th Aug I had a covid test, didn’t have any notification of a problem. I had my treatment on the Friday(27th) Saturday
Good day to all, I’d just like to put some information here. I’m double vaccinated with the Pfizer vaccine. I have Nplate treatment every week so I’m tested regularly for covid. Wednesday 25th Aug I had a covid test, didn’t have any notification of a problem. I had my treatment on the Friday(27th) Saturday
swheels
in
ITP Support Association
3 years ago
How to get rid of this itp thing
Hi. I try to be brief. I was diagnosed with itp on March 2018. Had a terrible 7 month of steroids and 5 rounds of rituximab with a stomach bleeding. Switched to Nplate and did fine for a year on one vial that I could inject every 10 days instead of 7 days but after a trip to turkey without any disease
Hi. I try to be brief. I was diagnosed with itp on March 2018. Had a terrible 7 month of steroids and 5 rounds of rituximab with a stomach bleeding. Switched to Nplate and did fine for a year on one vial that I could inject every 10 days instead of 7 days but after a trip to turkey without any disease
s00rena
in
ITP Support Association
3 years ago
Nplate experiences please
Hi all, was going to start rituximab but hemo wants to try Nplate first. Has anyone had a good / bad experience with this? Thanks
Hi all, was going to start rituximab but hemo wants to try Nplate first. Has anyone had a good / bad experience with this? Thanks
Loftyc
in
ITP Support Association
3 years ago
NPlate and hair thinning
Hi from a very wet and windy Dartmoor. I’m on nPlate and have been for the past two months, platelets are stable at 123 which is good. Have had a few side effects, joint pain, headaches but am also noticing my hair is thinning, even my hairdresser said I had lost a noticeable amount. Has anyone else
Hi from a very wet and windy Dartmoor. I’m on nPlate and have been for the past two months, platelets are stable at 123 which is good. Have had a few side effects, joint pain, headaches but am also noticing my hair is thinning, even my hairdresser said I had lost a noticeable amount. Has anyone else
DevonMaid1
in
ITP Support Association
3 years ago
Fatigue
Hello everyone, I am on nPlate, I am on weekly doses and been on it for 7 weeks. I am getting periods of extreme fatigue, similar to before I was diagnosed. I am not due to have another blood test to check my platelet levels for another three weeks. Does anyone else get fatigue on nPlate? Or is
Hello everyone, I am on nPlate, I am on weekly doses and been on it for 7 weeks. I am getting periods of extreme fatigue, similar to before I was diagnosed. I am not due to have another blood test to check my platelet levels for another three weeks. Does anyone else get fatigue on nPlate? Or is
DevonMaid1
in
ITP Support Association
3 years ago
Splenectomy or other options?
Our 6½ year old son has chronic itp. He was diagnosed with itp at 18 months old. His platelet counts have been all over the place but mostly low. We would be happy to have platelet numbers at 20,000-50,000. He has been on promacta for the last several years also has had many ivig transfusions. He is
Our 6½ year old son has chronic itp. He was diagnosed with itp at 18 months old. His platelet counts have been all over the place but mostly low. We would be happy to have platelet numbers at 20,000-50,000. He has been on promacta for the last several years also has had many ivig transfusions. He is
RJanna
in
ITP Support Association
4 years ago
Spleen removal
My daughter 28 was terrified to have her spleen removed and went through hell in for 1 yr. blood work was checked every week, besides the prednisone in basic treatment 4 rounds of rituximab was given(by the way if 1 round doesn't work don't let them prescribe more) platlet count only when up when
My daughter 28 was terrified to have her spleen removed and went through hell in for 1 yr. blood work was checked every week, besides the prednisone in basic treatment 4 rounds of rituximab was given(by the way if 1 round doesn't work don't let them prescribe more) platlet count only when up when
Espomom
in
ITP Support Association
4 years ago
Herpes infection within the body,couses platelets to go down even on nplate?
Hi there. My wife is diagnosed with ITP 2 years ago,she is on nplate and has her ups and down with increasing and decreasing the dose to stay round 100, she never had any bleading even when the platelets were 3000. Every time she gets a herpes on her lips or nose her platelets dive down and she has to
Hi there. My wife is diagnosed with ITP 2 years ago,she is on nplate and has her ups and down with increasing and decreasing the dose to stay round 100, she never had any bleading even when the platelets were 3000. Every time she gets a herpes on her lips or nose her platelets dive down and she has to
Jon1
in
ITP Support Association
4 years ago
Open Heart Surgery W/ ITP
On 11/8/2019 I had my 1st Heart Attack. Platelet Count was 3K. Stents would not be a option, because of lifetime Blood thinners. Would need open Heart surgery - 3 way bypass. This is not possible until my platelets get to 100K to perform the operation. Starting in late Dec 2019 I would start NPLATE injections
On 11/8/2019 I had my 1st Heart Attack. Platelet Count was 3K. Stents would not be a option, because of lifetime Blood thinners. Would need open Heart surgery - 3 way bypass. This is not possible until my platelets get to 100K to perform the operation. Starting in late Dec 2019 I would start NPLATE injections
Dahle2424
in
ITP Support Association
4 years ago
Does taking Nplate causes nose bleed ?
I'm currently in week 3 of taking Nplate. It could boost my platelet count to 32 however I have nosebleed sometimes recently. I was wondering if it's a side effect of NPlate or something serious?
I'm currently in week 3 of taking Nplate. It could boost my platelet count to 32 however I have nosebleed sometimes recently. I was wondering if it's a side effect of NPlate or something serious?
farasad2001
in
ITP Support Association
5 years ago
Take both Nplate and Rituximab at the same time
I have ITP and Anticardiolipin Antibody. I took my first injection of Rituximab two days ago. Even my Platelet count fell to 1000 after injection but doctors still want to keep me on treatment with rituximab. And also they want to start the Nplate for me today . I've asked doctors if it's a good idea
I have ITP and Anticardiolipin Antibody. I took my first injection of Rituximab two days ago. Even my Platelet count fell to 1000 after injection but doctors still want to keep me on treatment with rituximab. And also they want to start the Nplate for me today . I've asked doctors if it's a good idea
farasad2001
in
ITP Support Association
5 years ago
Ibrutinib and odd side effects
I have had CLL and ITP for almost 8 years now. My first year I was not treated but early in the second I had my first Rituxan, which was well tolerated but caused an infected cyst on the end of my tailbone which required surgery and three month convalescence. A second Rituxan was done in 2018 with
I have had CLL and ITP for almost 8 years now. My first year I was not treated but early in the second I had my first Rituxan, which was well tolerated but caused an infected cyst on the end of my tailbone which required surgery and three month convalescence. A second Rituxan was done in 2018 with
KevinCLLITP
in
CLL Support
5 years ago
Dental implant?
Hello all I have had itp for over 4 years with many ups and downs. I am currently self injecting Nplate weekly with platelets fluctuating within wide limits, but I feel ok apart from fatigue. Before itp hit me like a ton of bricks, I had a dental implant. Now it looks like I shall lose the tooth next
Hello all I have had itp for over 4 years with many ups and downs. I am currently self injecting Nplate weekly with platelets fluctuating within wide limits, but I feel ok apart from fatigue. Before itp hit me like a ton of bricks, I had a dental implant. Now it looks like I shall lose the tooth next
Heath21
in
ITP Support Association
5 years ago
Nplate clots
Jazzbo77 I was wondering how many Itp suffers took Nplate but developed blood clots at 55-75k platelets? I did in Oct-Dec 2014 and the more shots I took the more the clots spread until my Dr stopped the Nplate. I found 4 others that had the same thing on Nplate and one on promacta. The Drs stopped each
Jazzbo77 I was wondering how many Itp suffers took Nplate but developed blood clots at 55-75k platelets? I did in Oct-Dec 2014 and the more shots I took the more the clots spread until my Dr stopped the Nplate. I found 4 others that had the same thing on Nplate and one on promacta. The Drs stopped each
Jazzbo77
in
ITP Support Association
5 years ago
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