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INF+ ATO Study, "A knockout combination for MPN stem cells"
Some have likely seen this study. I looked into it some more today and realize it's a neat pre-clinical result. This is just FYI right now but it's an example of potential good things to come. (I just noticed Manouche posted on this last year, anyway maybe some new details here) "JAK2V617F myeloproliferative
Some have likely seen this study. I looked into it some more today and realize it's a neat pre-clinical result. This is just FYI right now but it's an example of potential good things to come. (I just noticed Manouche posted on this last year, anyway maybe some new details here) "JAK2V617F myeloproliferative
EPguy
in
MPN Voice
3 years ago
Alex TLC Digital Community Weekend
The agenda for our weekend is available to view: https://www.alextlc.org/digital-community-weekend-2021/ On Saturday, the Science Day, we have presentations about the new NHS Inherited White Matter Disorders Patient Registry and research updates on the following Leukodystrophies: - AMN & ALD - Alexander's
The agenda for our weekend is available to view: https://www.alextlc.org/digital-community-weekend-2021/ On Saturday, the Science Day, we have presentations about the new NHS Inherited White Matter Disorders Patient Registry and research updates on the following Leukodystrophies: - AMN & ALD - Alexander's
Hidden
Partner
in
Leukodystrophy Support
3 years ago
Intrinsic factor and parietal cell antibody positive but MMA normal is it PA?
I have intrinsic factor abs and anti parietal cells but methylmalonic acid level is normal. B12,folate, hb are all in range.I have Hashis and a range of B12 deficiency systems Could anyone please advise if there is ever a situation when a GP would not prescribe B12 given the ap and IFabs? I am beginning
I have intrinsic factor abs and anti parietal cells but methylmalonic acid level is normal. B12,folate, hb are all in range.I have Hashis and a range of B12 deficiency systems Could anyone please advise if there is ever a situation when a GP would not prescribe B12 given the ap and IFabs? I am beginning
Aumshantii
in
Pernicious Anaemia Society
3 years ago
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Has anyone achieved a reduction in fatigue from PMR through the introduction of tocilizumab (Actemra) into their treatment regimen?
Lately it seems as though my fatigue and depression are getting worse. I've had PMR for about 3 years now and it seems as though I am going downhill in so far as exhaustion is concerned. I almost have no desire, and to some extent, no ability to get anything done. I have read that the IL6 pathway is
Lately it seems as though my fatigue and depression are getting worse. I've had PMR for about 3 years now and it seems as though I am going downhill in so far as exhaustion is concerned. I almost have no desire, and to some extent, no ability to get anything done. I have read that the IL6 pathway is
Ozark
in
PMRGCAuk
3 years ago
Getting there….🏃♀️
After dealing with cancer, radiotherapy , chemotherapy , a stem cell transplant & a total hip replacement less then 10mts ago - I have just completed week 6 & Run 2! The thought of catching COVID because of my health issues has kept me locked away for nearly 2yrs - getting back out there to run has helped
After dealing with cancer, radiotherapy , chemotherapy , a stem cell transplant & a total hip replacement less then 10mts ago - I have just completed week 6 & Run 2! The thought of catching COVID because of my health issues has kept me locked away for nearly 2yrs - getting back out there to run has helped
SunShineRae
in
Couch to 5K
3 years ago
Tocilizumab
I am seeing a new rheumatologist following an urgent referral from the hospital tomorrow, Thursday 16th, afternoon. It has been suggested by the hospital registrar, he rang before 9.00am on Monday to see how I was after my emergency visit last Thursday and increased to 60mgs from 5mgs dose of pred.,
I am seeing a new rheumatologist following an urgent referral from the hospital tomorrow, Thursday 16th, afternoon. It has been suggested by the hospital registrar, he rang before 9.00am on Monday to see how I was after my emergency visit last Thursday and increased to 60mgs from 5mgs dose of pred.,
MavisEllen
in
PMRGCAuk
3 years ago
Tocilizumab & Covid vaccine
I seem to remember that I delayed my Toc jab when I had my Phizer jab. Is that correct? If so, by a day or a week? Getting booster today when I’d normally inject Toc.
I seem to remember that I delayed my Toc jab when I had my Phizer jab. Is that correct? If so, by a day or a week? Getting booster today when I’d normally inject Toc.
Bachblues
in
PMRGCAuk
3 years ago
Senolytic combo Dasatinib + Quercetin
Nalakrats has in two major posts shared fascinating insights on senescence and senolytics, drugs that selectively clear senescent cells. I am most grateful to him for this, which set me off on a journey the results of which I sum up in this post. Senescence has also recently been well reported on by
Nalakrats has in two major posts shared fascinating insights on senescence and senolytics, drugs that selectively clear senescent cells. I am most grateful to him for this, which set me off on a journey the results of which I sum up in this post. Senescence has also recently been well reported on by
Purple-Bike
in
Advanced Prostate Cancer
3 years ago
31 year old facing AML fight.
Evening everyone. In the last few days ive had to come to terms that i will be battling AML. But sadly there isnt much information out there regarding its effects on younger people. It seems to be all info regarding 65+ years old. No treatment has been started yet, still waiting on results coming back
Evening everyone. In the last few days ive had to come to terms that i will be battling AML. But sadly there isnt much information out there regarding its effects on younger people. It seems to be all info regarding 65+ years old. No treatment has been started yet, still waiting on results coming back
NathaN89
in
Leukaemia CARE
3 years ago
Advice dealing with chronic GVHD in the eyes and skin while trying to withdraw steroids
Hello everyone! I had a stem cell transplant last year and I am dealing with very uncomfortable Graft Versus Host Disease in my eyes and skin. The one in the eyes is the worse! I need to have drops every 10mins. Punctal ducts were helpful for three weeks only. I am waiting for some stem cell eye drops
Hello everyone! I had a stem cell transplant last year and I am dealing with very uncomfortable Graft Versus Host Disease in my eyes and skin. The one in the eyes is the worse! I need to have drops every 10mins. Punctal ducts were helpful for three weeks only. I am waiting for some stem cell eye drops
lifeafterSCT
in
MPN Voice
3 years ago
Tocilizumab and coming off prednisolone
Just looking for current advice as regards the usage of tocilizumab as an aid to getting down and off prednisolone. I met a helpful person on this site and he had been on prednisolone for many years - more than my 12 years. He told me his endocrinologist had put him on tocilizumab and he had managed
Just looking for current advice as regards the usage of tocilizumab as an aid to getting down and off prednisolone. I met a helpful person on this site and he had been on prednisolone for many years - more than my 12 years. He told me his endocrinologist had put him on tocilizumab and he had managed
Stkeyna
in
PMRGCAuk
3 years ago
Sodium / potassium
Sodium intake . Hi a question regarding sodium intake and potassium .I’m on pred 15 mg - I have noticed the days I am not paying attention to diet ( most days Im Good !) but if I eat anything salty !! - ie crisps / chips with salt etc then my fluid balance seems to go completely out of whack - my eyes
Sodium intake . Hi a question regarding sodium intake and potassium .I’m on pred 15 mg - I have noticed the days I am not paying attention to diet ( most days Im Good !) but if I eat anything salty !! - ie crisps / chips with salt etc then my fluid balance seems to go completely out of whack - my eyes
Ballywilliam
in
PMRGCAuk
3 years ago
Tocilizumab treatment?
A friend of mine recently suggested that I try the monoclonal antibody tocilizumab as a treatment for my PMR. My questions are as follows: Has tocilizumab brought anyone into remission and for how long? On balance, is treatment with tocilizumab preferable to the prednisone that I'm taking now? What is
A friend of mine recently suggested that I try the monoclonal antibody tocilizumab as a treatment for my PMR. My questions are as follows: Has tocilizumab brought anyone into remission and for how long? On balance, is treatment with tocilizumab preferable to the prednisone that I'm taking now? What is
Ozark
in
PMRGCAuk
3 years ago
Roactemra Tocilizumab - lab out of stock - advice needed please.
Some of you may remember that I am taking Tocilizumab injections (only) regularly for GCA. Not long ago, others in my situation wrote saying that they had been warned that it was going to run out for a while due to the same drug being used world wide for covid patients. This has happened here in France
Some of you may remember that I am taking Tocilizumab injections (only) regularly for GCA. Not long ago, others in my situation wrote saying that they had been warned that it was going to run out for a while due to the same drug being used world wide for covid patients. This has happened here in France
Frenchduck
in
PMRGCAuk
3 years ago
First Stem Cell Transplant Appointment done
Thanks to everyone who replied to my first post on this. My husband and I stayed over in Southampton and we got home today. To my great relief, the consultant was extremely approachable and excellent at explaining things. I didn't ask all of my questions as these initial discussions are being done over
Thanks to everyone who replied to my first post on this. My husband and I stayed over in Southampton and we got home today. To my great relief, the consultant was extremely approachable and excellent at explaining things. I didn't ask all of my questions as these initial discussions are being done over
Otterfield
in
MPN Voice
3 years ago
Study shows low or undetectable immune response to double COVID-19 vaccination in patients with impaired immune systems
The first data from the ongoing OCTAVE (Observational Cohort Trial-T-cells Antibodies and Vaccine Efficacy in SARS-CoV-2) study show that a significant proportion of clinically at-risk patients with certain immunocompromised or immunosuppressed conditions mount a low or undetectable immune response after
The first data from the ongoing OCTAVE (Observational Cohort Trial-T-cells Antibodies and Vaccine Efficacy in SARS-CoV-2) study show that a significant proportion of clinically at-risk patients with certain immunocompromised or immunosuppressed conditions mount a low or undetectable immune response after
2greys
in
Lung Conditions Community Forum
3 years ago
First Appointment re Stem Cell Transplant
This week I have my first appointment with a stem cell transplant specialist. I haven't made up my mind yet and I'm seeing this as a fact finding appointment. I've made a list of questions to ask: What exactly does it involve, step by step? What can go wrong? And if something goes wrong, what is the
This week I have my first appointment with a stem cell transplant specialist. I haven't made up my mind yet and I'm seeing this as a fact finding appointment. I've made a list of questions to ask: What exactly does it involve, step by step? What can go wrong? And if something goes wrong, what is the
Otterfield
in
MPN Voice
3 years ago
Who should receive a 3rd COVID-19 dose according to the CDC
I just received this email from Tufts Medical Center in Boston, Massachusetts and it's another confirmation as to who is really immunocompromised. I hope this helps some members of this forum who are on higher doses of Pred. "Patient Update - Dear Tufts Medical Center and Tufts Children’s Hospital Community
I just received this email from Tufts Medical Center in Boston, Massachusetts and it's another confirmation as to who is really immunocompromised. I hope this helps some members of this forum who are on higher doses of Pred. "Patient Update - Dear Tufts Medical Center and Tufts Children’s Hospital Community
kulina
in
PMRGCAuk
3 years ago
Three and a half years with Mantle cell lymphoma
I got diagnosed with Mantle Cell Lymphoma in March 2018 when I was 61. As it had already spread from my lymph nodes to multiple organs I was immediately admitted to hospital and began six rounds of Nordic protocol chemotherapy, followed by a stem cell bone marrow transplant. After my transplant I had
I got diagnosed with Mantle Cell Lymphoma in March 2018 when I was 61. As it had already spread from my lymph nodes to multiple organs I was immediately admitted to hospital and began six rounds of Nordic protocol chemotherapy, followed by a stem cell bone marrow transplant. After my transplant I had
GT97
in
CLL Support
3 years ago
B12 Testing
My GP tested my B12 in late June and it was 248. She gave me a B12 (Cyanocobalamin) injection on June 30th without doing any other tests. I then went to see a neurologist and she couldn’t believe that the GP had not done more testing. The neurologist has me scheduled today for the following tests: B12
My GP tested my B12 in late June and it was 248. She gave me a B12 (Cyanocobalamin) injection on June 30th without doing any other tests. I then went to see a neurologist and she couldn’t believe that the GP had not done more testing. The neurologist has me scheduled today for the following tests: B12
Pain12345
in
Pernicious Anaemia Society
3 years ago
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