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Diagnosis: "Favors Essential Thrombocythemia"
So this is good news. Except for one thing. My bmb did show some "mild to moderate reticulin fibrosis. Nevertheless the diagnosis favors the ET. My hematologist says that we will keep a close eye on bloodwork going forward. As I have the Calr 1 mutation and am already on Eliquis, no additional medication
So this is good news. Except for one thing. My bmb did show some "mild to moderate reticulin fibrosis. Nevertheless the diagnosis favors the ET. My hematologist says that we will keep a close eye on bloodwork going forward. As I have the Calr 1 mutation and am already on Eliquis, no additional medication
Mtnlife
in
MPN Voice
1 year ago
Drug interactions/conflicts
Hi everyone I am Coeliac and also have Essential Thrombocythemia for which I take Hydroxycarbamide. Amongst the many side effects from HC my regular blood tests have shown me to be borderline anaemic and my regular GP has monitored this for years - checking kidney & liver function, and also on Folate
Hi everyone I am Coeliac and also have Essential Thrombocythemia for which I take Hydroxycarbamide. Amongst the many side effects from HC my regular blood tests have shown me to be borderline anaemic and my regular GP has monitored this for years - checking kidney & liver function, and also on Folate
quanglewangle
in
MPN Voice
1 year ago
What is the difference between these two tests?
Parietal Cell Antibody, ELISA/ positive Parietal Cell Antibody with Relex to Titer/ Negative
Parietal Cell Antibody, ELISA/ positive Parietal Cell Antibody with Relex to Titer/ Negative
Tigerlilly81
in
Pernicious Anaemia Society
1 year ago
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Tapering with new issues ongoing
Tapering while new issues arvine profile image arvine• 8 hours ago•1 Reply well I have told my story pretty well all along, including some family serious illnesses . In previous comments, I have mentioned my son, who has fought a battle actually since June 2017, beingdiagnosed with multiple myeloma
Tapering while new issues arvine profile image arvine• 8 hours ago•1 Reply well I have told my story pretty well all along, including some family serious illnesses . In previous comments, I have mentioned my son, who has fought a battle actually since June 2017, beingdiagnosed with multiple myeloma
arvine
in
PMRGCAuk
1 year ago
Tapering while new issues
well I have told my story pretty well all along, including some family serious illnesses . In previous comments, I have mentioned my son, who has fought a battle actually since June 2017, beingdiagnosed with multiple myeloma, having stem cell transplant in Jan 2018, as a mom, this was very hard to see
well I have told my story pretty well all along, including some family serious illnesses . In previous comments, I have mentioned my son, who has fought a battle actually since June 2017, beingdiagnosed with multiple myeloma, having stem cell transplant in Jan 2018, as a mom, this was very hard to see
arvine
in
Pain Concern
1 year ago
Why do we have mutations?
Why do we all have these bone marrow mutations? It cannot all be due to family DNA bad luck. My haemo told me that he is certain that my mutation is due to exposure to Benzene in petroleum products. In effect I have been poisoned by products which were supposed to be safe. Benzene compounds are still
Why do we all have these bone marrow mutations? It cannot all be due to family DNA bad luck. My haemo told me that he is certain that my mutation is due to exposure to Benzene in petroleum products. In effect I have been poisoned by products which were supposed to be safe. Benzene compounds are still
Andrew8
in
MPN Voice
1 year ago
Bone Marrow Transplant
BONE MARROW TRANSPLANT:Why Mazi Henry Uroegbulam Eric Otulle Eke Sr Will Never Ever Forgive World-famous Hospital For Failing His Daughter - was the child used as a guinea-pig? BONE MARROW TRANSPLANT: Sub-Continent with world's highest prevalence of SCD/SCT goes into BMT - a whole new era for medical
BONE MARROW TRANSPLANT:Why Mazi Henry Uroegbulam Eric Otulle Eke Sr Will Never Ever Forgive World-famous Hospital For Failing His Daughter - was the child used as a guinea-pig? BONE MARROW TRANSPLANT: Sub-Continent with world's highest prevalence of SCD/SCT goes into BMT - a whole new era for medical
sicklecellnews
in
Sickle Cell Society
1 year ago
Hot flashes?
Am having ever more hot flashes and sweating around my neck over last several months. Could it be the steroids? In the distant past, was relying on welbutrin for depression but got hot flashes and changed to escatolepram. In the last few years I started taking a small dose of welbutrin in addition
Am having ever more hot flashes and sweating around my neck over last several months. Could it be the steroids? In the distant past, was relying on welbutrin for depression but got hot flashes and changed to escatolepram. In the last few years I started taking a small dose of welbutrin in addition
Merryfield
in
PMRGCAuk
1 year ago
Can you 'demand' Tocilizumab for GCA?
I was diagnosed with PMR in January 23, responded well to steroids (15mg) but quickly developed GCA symptoms (severe headache pain, blurred vision and jaw claudication) when these were reduced to 12.5mg after 3 weeks and 'normal' CRP/ESR tests. I was referred to Ambulatory care but an ultrasound showed
I was diagnosed with PMR in January 23, responded well to steroids (15mg) but quickly developed GCA symptoms (severe headache pain, blurred vision and jaw claudication) when these were reduced to 12.5mg after 3 weeks and 'normal' CRP/ESR tests. I was referred to Ambulatory care but an ultrasound showed
tweety_pie
in
PMRGCAuk
1 year ago
Tocilizumab
Hi. Has anyone had Tocilizumab injections for pmr? I've been looking at recent research which seems to suggest favourable outcomes for pmr sufferers who have problems tapering prednisolone.
Hi. Has anyone had Tocilizumab injections for pmr? I've been looking at recent research which seems to suggest favourable outcomes for pmr sufferers who have problems tapering prednisolone.
BlueMozart
in
PMRGCAuk
1 year ago
Red face / flushing. Possible rosacea
Hi I am 200 plus days post stem cell transplant. Since then I get flushed very easily. I have suffered with this in the past and still have it now but maybe worse I take a few medications still which may or may not help and wondered on any good way of controlling it my consultant has recommended me
Hi I am 200 plus days post stem cell transplant. Since then I get flushed very easily. I have suffered with this in the past and still have it now but maybe worse I take a few medications still which may or may not help and wondered on any good way of controlling it my consultant has recommended me
Kraskie1915
in
CLL Support
1 year ago
Can anyone figure out my MRD
Can anyone figure out what my MRD ( CLL cells per 10,000) is from this report. Component Your Value Standard Range Interpretation Flow cytometric immunophenotyping performed on the peripheral blood shows a small, dim kappa restricted B-cell population (representing ~98% of B cells, 6% of total
Can anyone figure out what my MRD ( CLL cells per 10,000) is from this report. Component Your Value Standard Range Interpretation Flow cytometric immunophenotyping performed on the peripheral blood shows a small, dim kappa restricted B-cell population (representing ~98% of B cells, 6% of total
johnliston
in
CLL Support
1 year ago
CLL Educational Webinar
This educational webinar will give an overview of how CLL is treated today and the significance of ’hot topics’ and key treatment development advances published and discussed at 2022 international hematology conferences. What is new and what does this mean for patients? We will be joined by: Prof Paolo
This educational webinar will give an overview of how CLL is treated today and the significance of ’hot topics’ and key treatment development advances published and discussed at 2022 international hematology conferences. What is new and what does this mean for patients? We will be joined by: Prof Paolo
Irishcll
in
CLL Support
1 year ago
Ruxolitinib/Pegylated Interferon Alpha 2a Reduces Spleen Length in Myelofibrosis
« Such deep molecular responses, to our knowledge, have never been seen in patients with myelofibrosis before,” Kiladjian noted » »A previously developed mathematical model for predicting long-term responses in patients with PV and ET was found to be applicable to this study and predicted a long-term
« Such deep molecular responses, to our knowledge, have never been seen in patients with myelofibrosis before,” Kiladjian noted » »A previously developed mathematical model for predicting long-term responses in patients with PV and ET was found to be applicable to this study and predicted a long-term
Manouche
in
MPN Voice
1 year ago
Patient Empowerment Network New CLL Content March 2023
Dr. Michael Choi explains CLL patient trial opportunities and provides key questions to ask about clinical trial participation View Now >> https://powerfulpatients.org/2022/12/07/hesitant-to-participate-in-a-cll-clinical-trial-what-you-should-know/ - Developing CLL Research and Treatment News
Dr. Michael Choi explains CLL patient trial opportunities and provides key questions to ask about clinical trial participation View Now >> https://powerfulpatients.org/2022/12/07/hesitant-to-participate-in-a-cll-clinical-trial-what-you-should-know/ - Developing CLL Research and Treatment News
lankisterguy
Volunteer
in
CLL Support
1 year ago
myelofibrosis
hello anyone with mf,I'm not sure if I should start treatment a lot of people on here are on treatment. my platelets are normal, hb slightly low ,slightly enlarged spleen ,fatigue is main symptom. I'm on watch and wait but should I be on something to stop the mf progressing.
hello anyone with mf,I'm not sure if I should start treatment a lot of people on here are on treatment. my platelets are normal, hb slightly low ,slightly enlarged spleen ,fatigue is main symptom. I'm on watch and wait but should I be on something to stop the mf progressing.
glyndale
in
MPN Voice
1 year ago
Relapse/Refractory CLL
Hi All, At my last appointment w/CLL specialist, in December, he noted that my CLL appears to be becoming active again and I'll likely need treatment again this year. :( Instead of the usual 6-months, he set our next appointment for 3-months, which is coming up this week. So, of course, I've been
Hi All, At my last appointment w/CLL specialist, in December, he noted that my CLL appears to be becoming active again and I'll likely need treatment again this year. :( Instead of the usual 6-months, he set our next appointment for 3-months, which is coming up this week. So, of course, I've been
TeamDirtyBoots
in
CLL Support
1 year ago
Real-world treatments and thrombotic events in polycythemia vera patients in the USA
»The majority of patients in both risk groups (60% of high-risk and 83% of low-risk) initiated treatment with phlebotomy monotherapy, and during a median follow-up period of 808 days, the vast majority (81% low-risk, 74% high-risk) maintained their original therapy during the follow-up period. Hematocrit
»The majority of patients in both risk groups (60% of high-risk and 83% of low-risk) initiated treatment with phlebotomy monotherapy, and during a median follow-up period of 808 days, the vast majority (81% low-risk, 74% high-risk) maintained their original therapy during the follow-up period. Hematocrit
Manouche
in
MPN Voice
2 years ago
Real world experience with Besremi in ET and PV following exposure to Pegasys.
Abstract Despite widespread use of Pegylated forms of Inteferon in the management of Myeloproliferative Neoplasms (MPN), most clinicians have experience predominantly with peginterferon alfa-2a (Pegasys). Third generation pegylated IFNα, ropeginterferon alfa-2b (ropegIFN; Besremi), was recommended
Abstract Despite widespread use of Pegylated forms of Inteferon in the management of Myeloproliferative Neoplasms (MPN), most clinicians have experience predominantly with peginterferon alfa-2a (Pegasys). Third generation pegylated IFNα, ropeginterferon alfa-2b (ropegIFN; Besremi), was recommended
Manouche
in
MPN Voice
2 years ago
Update on my previous post trapped nerve and PMR.
After an MRI on my spine I do not have a trapped nerve in my back and my pain is two vertebrae bones crumbling. I have come to the conclusion that the pain in my back and bottom area is mainly my PMR flare, it is so bad I can't move without pain while in bed. Tried increasing my pred dosage from 6mg
After an MRI on my spine I do not have a trapped nerve in my back and my pain is two vertebrae bones crumbling. I have come to the conclusion that the pain in my back and bottom area is mainly my PMR flare, it is so bad I can't move without pain while in bed. Tried increasing my pred dosage from 6mg
Washingup
in
PMRGCAuk
1 year ago
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