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Sickle-cell anaemia
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Besremi and Hematocrit Control
Closing in on five months on Besremi and my WBC and PLT's are now in the "normal" range, but HCT control continues to be elusive. I did get a 250ml PB on May 21, hoping that along with higher dose of Besremi (145) would knock the HCT down. The result? Exactly the same. 43.6 (My goal is 42 or lower
Closing in on five months on Besremi and my WBC and PLT's are now in the "normal" range, but HCT control continues to be elusive. I did get a 250ml PB on May 21, hoping that along with higher dose of Besremi (145) would knock the HCT down. The result? Exactly the same. 43.6 (My goal is 42 or lower
Elizka
in
MPN Voice
2 years ago
Curious, recovery timeline
Hello all I hope everyone is doing well :) I have a quick question that I am curious about. I am wondering how long have you been receiving treatment, how often are you receiving treatment, and if you have made a full recovery or still suffer from symptoms. I am a 37yo female who was diagnosed B12
Hello all I hope everyone is doing well :) I have a quick question that I am curious about. I am wondering how long have you been receiving treatment, how often are you receiving treatment, and if you have made a full recovery or still suffer from symptoms. I am a 37yo female who was diagnosed B12
Ctadds1
in
Pernicious Anaemia Society
2 years ago
ET JAK2 positive
Hello all, This is my first post although I joined the forum about two years ago. Not sure why I haven’t posted sooner and not sure exactly where to start. I would like to say thank you to everyone here for all of the invaluable information and sharing your stories and experiences with MPN’s. I read
Hello all, This is my first post although I joined the forum about two years ago. Not sure why I haven’t posted sooner and not sure exactly where to start. I would like to say thank you to everyone here for all of the invaluable information and sharing your stories and experiences with MPN’s. I read
pjm03
in
MPN Voice
2 years ago
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New bloods - confused about iron study outcomes
Good afternoon Fabulous people – hoping for your wisdom again. I had new bloods on 10th June (8 week check on levo dosage). I knew that the NHS bloods wouldn’t test FT3 and FT4 (even though they were specifically requested on the form by the GP). I ordered a medichecks test to test these privately.
Good afternoon Fabulous people – hoping for your wisdom again. I had new bloods on 10th June (8 week check on levo dosage). I knew that the NHS bloods wouldn’t test FT3 and FT4 (even though they were specifically requested on the form by the GP). I ordered a medichecks test to test these privately.
AtemiM
in
Thyroid UK
2 years ago
Private FIT test recommendation
Hi, I'm still very much in that 'more questions than answers' phase regarding my health with a mix of thyroid, anaemia and perimenopause issues going on. Due to repeated low iron over many years, I'm thankful the NHS is now looking into the cause and I have a colonoscopy and gastroscopy arranged
Hi, I'm still very much in that 'more questions than answers' phase regarding my health with a mix of thyroid, anaemia and perimenopause issues going on. Due to repeated low iron over many years, I'm thankful the NHS is now looking into the cause and I have a colonoscopy and gastroscopy arranged
Insomania
in
Thyroid UK
2 years ago
ET progression to MF - anxiety issues
My ET is now progressing to Post ET Myelofibrisis. My hemo has recommended I start on Ruxolitinib & also to be considered for a stem cell transplant. I know some of you have been in the same situation. Am I correct in thinking MF is life limiting? Also how have any of you coped on Rux? I feel very
My ET is now progressing to Post ET Myelofibrisis. My hemo has recommended I start on Ruxolitinib & also to be considered for a stem cell transplant. I know some of you have been in the same situation. Am I correct in thinking MF is life limiting? Also how have any of you coped on Rux? I feel very
SRH55
in
MPN Voice
2 years ago
Husband’s recent iron panel labs show dire ferritin but other levels appear to say he shouldn’t supplement. Unless I’ve misunderstood
We requested an iron panel as it was clear his GP wasn’t going to offer even though husband falls asleep at the drop of a hat. I’m glad we asked because his ferritin is very low having fallen from his usual 50-90 over the years 26/07/22 Ferritin 19.2 (22 -322) Serum iron 21.4 (14 - 31.3) 42.77%
We requested an iron panel as it was clear his GP wasn’t going to offer even though husband falls asleep at the drop of a hat. I’m glad we asked because his ferritin is very low having fallen from his usual 50-90 over the years 26/07/22 Ferritin 19.2 (22 -322) Serum iron 21.4 (14 - 31.3) 42.77%
Noelnoel
in
Thyroid UK
2 years ago
Should I be taking an iron supplement?
Hi all, I tested my iron level and I got: Iron 13 μmol/l (11-32) Transferrin 2.2 g/l (2.0-3.6) Transferrin saturation 23.5% (16-45) In 2020 I had the following: Serum iron 20.9 μmol/l (13-32) Serum transferrin 2.17 g/l (2.00-3.60) Serum unsaturated binding capacity 49μmol/l (45-70) Saturation
Hi all, I tested my iron level and I got: Iron 13 μmol/l (11-32) Transferrin 2.2 g/l (2.0-3.6) Transferrin saturation 23.5% (16-45) In 2020 I had the following: Serum iron 20.9 μmol/l (13-32) Serum transferrin 2.17 g/l (2.00-3.60) Serum unsaturated binding capacity 49μmol/l (45-70) Saturation
WhyAmISoTired
in
Thyroid UK
2 years ago
Besremi and Zyrtec
Hi.........I'm going through the process of getting approved for Besremi. My not specialist hem is worried about me taking Zyrtec, She told me that I need to stop taking once I start Besremi. I take it for bad allergies and my PV JAk2+. Anyone been told this or are there folks still taking Zyrtec?
Hi.........I'm going through the process of getting approved for Besremi. My not specialist hem is worried about me taking Zyrtec, She told me that I need to stop taking once I start Besremi. I take it for bad allergies and my PV JAk2+. Anyone been told this or are there folks still taking Zyrtec?
nyelynndesigns
in
MPN Voice
2 years ago
Trying to get a diagnosis of PA via a GP
Good evening Due to feeling unwell with loss of appetite, feeling of being full, chronic fatigue, shortness of breath, impaired vision with floating black dots - i could go on! and already knowing i was anaemic, I asked the GP for a bit b12 blood test, this came back as normal but I have low serum
Good evening Due to feeling unwell with loss of appetite, feeling of being full, chronic fatigue, shortness of breath, impaired vision with floating black dots - i could go on! and already knowing i was anaemic, I asked the GP for a bit b12 blood test, this came back as normal but I have low serum
4daughters1971
in
Pernicious Anaemia Society
2 years ago
Buprenorphine - what are the pluses?
I'm currently on 1800 mgs of Gabapentin, which, after a brief reprise, is failing to suppress my PLMs sufficiently. They wake me up and I continue to experience them until they're dismissed by walking up and down. I have just been issued with a Buprenorphine patch. I'm acquainted with the various side
I'm currently on 1800 mgs of Gabapentin, which, after a brief reprise, is failing to suppress my PLMs sufficiently. They wake me up and I continue to experience them until they're dismissed by walking up and down. I have just been issued with a Buprenorphine patch. I'm acquainted with the various side
dickJones
in
Restless Legs Syndrome
2 years ago
The Polymyalgia Rheumatica Diet: The Ultimate Nutritional Guide To Reversing And Managing Polymyalgia Rheumatica And Giant Cell Arteritis
Has anyone read this book by Hunwick Debby? Did they find it useful? Generally does your diet help improve your condition?
Has anyone read this book by Hunwick Debby? Did they find it useful? Generally does your diet help improve your condition?
Yorksman
in
PMRGCAuk
2 years ago
Lab Work Preparation
This isn’t really regarding B12 but you all seem to be so helpful and more research based than other groups, so I’m hoping you can help me. I am having routine bloodwork done in a couple weeks for my hematologist appointment. I’m regards to folate and iron, do I need to stop those for any length of times
This isn’t really regarding B12 but you all seem to be so helpful and more research based than other groups, so I’m hoping you can help me. I am having routine bloodwork done in a couple weeks for my hematologist appointment. I’m regards to folate and iron, do I need to stop those for any length of times
lambuth_eagle
in
Pernicious Anaemia Society
2 years ago
Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. 2nd edition. By Kate Gilbert
Have you all read the above book by Kate Gilbert? It’s a must if you are a sufferer of PMR or GCA. So much sound practical information and we all know that knowledge is power. Good luck on your journey fellow sufferers. The light is at the end of the tunnel. XxX
Have you all read the above book by Kate Gilbert? It’s a must if you are a sufferer of PMR or GCA. So much sound practical information and we all know that knowledge is power. Good luck on your journey fellow sufferers. The light is at the end of the tunnel. XxX
SouthStrand
in
PMRGCAuk
2 years ago
Spring booster
Hi all. So I have had a text to say that I can have the spring booster. I've had 4 boosters due to my immune. So is the spring classed as the 4th or is the spring one the 5th. Just a bit confused. TIA
Hi all. So I have had a text to say that I can have the spring booster. I've had 4 boosters due to my immune. So is the spring classed as the 4th or is the spring one the 5th. Just a bit confused. TIA
Bull5160
in
LUPUS UK
2 years ago
RLS restlessness vs electric shock feeling
I had a question for everyone…. My RLS has the restlessness feeling but it also has the electric jolt feeling which is worse and it’s def more aggravating than the urge to move itself as anyone who I have spoke to knows I am a difficult case and my doctor and I are trying everything. I have recently
I had a question for everyone…. My RLS has the restlessness feeling but it also has the electric jolt feeling which is worse and it’s def more aggravating than the urge to move itself as anyone who I have spoke to knows I am a difficult case and my doctor and I are trying everything. I have recently
RC723
in
Restless Legs Syndrome
2 years ago
Menopause and Sickle Cell
I am experiencing menopause because, I haven't had a period in many months. But what I notice is that I'm experiencing sickle cell crisis more often. After reading a lot information, I discovered that since the hormones protecting me and now going down, I'm at risk of many things, including stroke, heart
I am experiencing menopause because, I haven't had a period in many months. But what I notice is that I'm experiencing sickle cell crisis more often. After reading a lot information, I discovered that since the hormones protecting me and now going down, I'm at risk of many things, including stroke, heart
Iyalode26
in
Sickle Cell Society
2 years ago
Can you take too many sublinguals?
So I know that you can't take too much b12 but I keep wimping out of self injecting and need to get myself through the few weeks before my next injection so I'm going to trial taking lots of sublinguals and see if that helps, I think they do help a tiny bit but no way near enough. Anyone tried this
So I know that you can't take too much b12 but I keep wimping out of self injecting and need to get myself through the few weeks before my next injection so I'm going to trial taking lots of sublinguals and see if that helps, I think they do help a tiny bit but no way near enough. Anyone tried this
Clare184
in
Pernicious Anaemia Society
2 years ago
Update and meeting the team.
I’ve had lost of tests done over the past few months. I met up the the transplant team. I’m looking at 5-10 years for a bone marrow transplant, they said it could be earlier, as I’m still working and I’m well enough they don’t want to do it to early. I will need to take year off work, (when the time
I’ve had lost of tests done over the past few months. I met up the the transplant team. I’m looking at 5-10 years for a bone marrow transplant, they said it could be earlier, as I’m still working and I’m well enough they don’t want to do it to early. I will need to take year off work, (when the time
wendycu
in
MPN Voice
2 years ago
Evusheld results
I thought it might be helpful to share the antibody results of my Evusheld injections. I was first diagnosed with CLL in 2013 and started Ibrutinib in February 2020. I received my first Evusheld injections on February 1, 2022 and 2nd injections on March 3, 2022. Covid antibody tests were done in
I thought it might be helpful to share the antibody results of my Evusheld injections. I was first diagnosed with CLL in 2013 and started Ibrutinib in February 2020. I received my first Evusheld injections on February 1, 2022 and 2nd injections on March 3, 2022. Covid antibody tests were done in
rbg4410
in
CLL Support
2 years ago
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