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Giant Cell Arteritis and Tocilizumab Patient Experience Needed
If you have been treated with Tocilizumab for Giant Cell Arteritis VUK would like to hear of your experiences both good and bad. Please contact John Mills email John.mills@vasculitis.org.uk as soon as possible
If you have been treated with Tocilizumab for Giant Cell Arteritis VUK would like to hear of your experiences both good and bad. Please contact John Mills email John.mills@vasculitis.org.uk as soon as possible
Suzym2u
Vasculitis UK
in
Vasculitis UK
7 years ago
Sickle Cell Trait
Hi Im 21 years old and have been diagnosed with Sickle Cell Trait when i was seven, I have been experiencing some dizziness a couple days now which is very uncomfortable. It feels as if i am very intoxicated, moving my head and neck in certain directions is extremely discomforting as it feels like if
Hi Im 21 years old and have been diagnosed with Sickle Cell Trait when i was seven, I have been experiencing some dizziness a couple days now which is very uncomfortable. It feels as if i am very intoxicated, moving my head and neck in certain directions is extremely discomforting as it feels like if
Miguelf
in
Sickle Cell Society
7 years ago
Just the facts / In Summer Heat Stay Hydrated - Please
FACT about sickle cell trait "The defect in urine concentrating ability in persons with sickle cell trait is thought to result from intracellular polymerization of Hb S in erythrocytes, leading to microvascular occlusion, in the vasa recta of the renal medulla. Reasoning that the severity of the concentration
FACT about sickle cell trait "The defect in urine concentrating ability in persons with sickle cell trait is thought to result from intracellular polymerization of Hb S in erythrocytes, leading to microvascular occlusion, in the vasa recta of the renal medulla. Reasoning that the severity of the concentration
RadiantSue
in
Sickle Cell Society
7 years ago
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For those diagnosed with Giant Cell Arteritis - this was tweeted just a few minutes ago
A breakthrough in the treatment of GCA @RheumatologyUK @PMRGCAuk @vascuk Please follow this link https://www.ncbi.nlm.nih.gov/pubmed/28745999
A breakthrough in the treatment of GCA @RheumatologyUK @PMRGCAuk @vascuk Please follow this link https://www.ncbi.nlm.nih.gov/pubmed/28745999
Suzym2u
Vasculitis UK
in
Vasculitis UK
7 years ago
Looking for advice.
Hi. I've just joined this site for two reasons. My daughter has Graves disease. I have primary hyperparathyroidism with possible 4 gland hyperplasia. I had a parathyroidectomy 5 weeks ago with half my thyroid removed during the operation. My daughters blood results are good at the moment but she is only
Hi. I've just joined this site for two reasons. My daughter has Graves disease. I have primary hyperparathyroidism with possible 4 gland hyperplasia. I had a parathyroidectomy 5 weeks ago with half my thyroid removed during the operation. My daughters blood results are good at the moment but she is only
hollyhobbi
in
Thyroid UK
7 years ago
Being a sickle cell
I never knew I was had the SCT trait until I was 15years. I always had pain and fell sick easily with malaria and a times typhoid. And even d sickle cell crisis . It's not easy to be a carrier of this trait but with good diet, medication and love from families and friends, I bliv all is well.
I never knew I was had the SCT trait until I was 15years. I always had pain and fell sick easily with malaria and a times typhoid. And even d sickle cell crisis . It's not easy to be a carrier of this trait but with good diet, medication and love from families and friends, I bliv all is well.
dinah9927
in
Sickle Cell Society
7 years ago
Bone marrow transplant on the cards
Meeting with a BMT consultant yesterday. Nice chap. Laid it all on the line warts and all. 6-9 months for the Ibutrinin to do it's job then in for BMT. Good news is that I will only be in 4 weeks and can more or less choose when it's best for me to start. Sisters tissue is done, mine is not ready but
Meeting with a BMT consultant yesterday. Nice chap. Laid it all on the line warts and all. 6-9 months for the Ibutrinin to do it's job then in for BMT. Good news is that I will only be in 4 weeks and can more or less choose when it's best for me to start. Sisters tissue is done, mine is not ready but
KAS8
in
CLL Support
7 years ago
Newbie with Temporal Arteritis. New drug Tocilizumab (actrema)
Hi, I am new and have been reading a lot of good info an was so comforted when I read a post by another newbie who also has been in this battle alone. It has been 28 months and I just relapsed(Flared) I was down to 10mg now back to 35. I also relapsed Christmas Eve. My Rheumatologist wants me to go on
Hi, I am new and have been reading a lot of good info an was so comforted when I read a post by another newbie who also has been in this battle alone. It has been 28 months and I just relapsed(Flared) I was down to 10mg now back to 35. I also relapsed Christmas Eve. My Rheumatologist wants me to go on
Hidden
in
PMRGCAuk
7 years ago
Once again, sad relapse
Sad news 😢 I was in remission only a few months for systematic NHL in 2015 after 6 rounds of R-EPOCH, then I had a recurrence in my Central nervous system once the NHL had crossed the blood brain barrier. I then had 8 rounds of Methotrexate/Rituxin prior to a stem cell transplant in Nov 2016 (the chemo
Sad news 😢 I was in remission only a few months for systematic NHL in 2015 after 6 rounds of R-EPOCH, then I had a recurrence in my Central nervous system once the NHL had crossed the blood brain barrier. I then had 8 rounds of Methotrexate/Rituxin prior to a stem cell transplant in Nov 2016 (the chemo
Jennchap1
in
Non Hodgkin's Lymphoma Friends
7 years ago
So sorry! Another supplement enquiry. B vitamins, excluding b12?
I received my sublingual b12 vitamins today (1000 mcg Methylcobalamin, taking 2 to begin with as level is 372 ng/L [> 180]) but I wonder whether I should still be supplementing with other b vits as well, including folic acid (my folate is 16 ng/ml [4.6 - 34.8)? I don't want to miss important ones out
I received my sublingual b12 vitamins today (1000 mcg Methylcobalamin, taking 2 to begin with as level is 372 ng/L [> 180]) but I wonder whether I should still be supplementing with other b vits as well, including folic acid (my folate is 16 ng/ml [4.6 - 34.8)? I don't want to miss important ones out
sip1
in
Thyroid UK
7 years ago
Journey begins
Hello ladies , a few hours since my first appointment with consultant following ultrasound diagnosis of a complex cyst two weeks ago. Surgery in three weeks to remove ovaries and Fallopian tubes he asked me to consent to further surgery when He's already there but warned he may have to go back in
Hello ladies , a few hours since my first appointment with consultant following ultrasound diagnosis of a complex cyst two weeks ago. Surgery in three weeks to remove ovaries and Fallopian tubes he asked me to consent to further surgery when He's already there but warned he may have to go back in
Christie22
in
My Ovacome
7 years ago
Giant cell arteritis
I just this minute signed up with healthunlocked. I am looking to talk with someone who has giant cell arteritis....particularly if you are experiencing fatigue.
I just this minute signed up with healthunlocked. I am looking to talk with someone who has giant cell arteritis....particularly if you are experiencing fatigue.
Buddyk
in
PMRGCAuk
7 years ago
First time here
Hi everyone. I really don't know how to start and I honestly feel kind of embarrassed just throwing my business out for the entire world to see but I'm not sure what else to do. I'll keep this short, try to at least. I've been through Hodgkins Lymphoma twice, as recently as last year and beat it again
Hi everyone. I really don't know how to start and I honestly feel kind of embarrassed just throwing my business out for the entire world to see but I'm not sure what else to do. I'll keep this short, try to at least. I've been through Hodgkins Lymphoma twice, as recently as last year and beat it again
AntonioAndEmilio
in
Anxiety and Depression Support
7 years ago
Transplant Patients - SCT/BMT
Have you had or are a candidate for a Stem Cell Transplant or someone who is a caregiver of a SCT patient? If so, there is a fantastic Facebook support group for SCT and BMT patients and their caregivers. If you would like the link, please message me and I would be happy to provide it to you. NOTE:
Have you had or are a candidate for a Stem Cell Transplant or someone who is a caregiver of a SCT patient? If so, there is a fantastic Facebook support group for SCT and BMT patients and their caregivers. If you would like the link, please message me and I would be happy to provide it to you. NOTE:
Tinkerbellcgy
in
Non Hodgkin's Lymphoma Friends
7 years ago
Multiple myeloma
Yo everyone I have mutiple myeloma colapse playing tennis back in may 2016 though I rip tenons and hip joint which they thought had come away from hip joint back wards forwards to doctor s for the pain in my left leg and thigh and hip joint could sleep pain was horrible got diagnosis in Feb 2017 with
Yo everyone I have mutiple myeloma colapse playing tennis back in may 2016 though I rip tenons and hip joint which they thought had come away from hip joint back wards forwards to doctor s for the pain in my left leg and thigh and hip joint could sleep pain was horrible got diagnosis in Feb 2017 with
Yobigfoot247
in
Myeloma UK
7 years ago
Searching for a TKO
I am seeking out others who may have a shared experience as am in a frustrating and nerve wracking place. I was diagnosed in Aug 2016 with DLBC Lymphoma, stage OK ...dr felt so confident that 6 rounds "gold standard treatment with RCHOP" would CURE this. 3 cycles and scan, good progress (original
I am seeking out others who may have a shared experience as am in a frustrating and nerve wracking place. I was diagnosed in Aug 2016 with DLBC Lymphoma, stage OK ...dr felt so confident that 6 rounds "gold standard treatment with RCHOP" would CURE this. 3 cycles and scan, good progress (original
buttrflymeme
in
Non Hodgkin's Lymphoma Friends
7 years ago
Atypical CML / MPN
Hi, I was diagnosed with Atypical Chronic Myeloid Leukemia (aCML) in September 2016 (WBC 37,000 on 8/23/16) - classed as an MPN. ("Looks" like CML, but no Philadelphia chromosome.) High neutrophils, thrombocytopenia (platelets have drifted down from roughly 130-140 in Sept. to 96 and a few 80's in April-May
Hi, I was diagnosed with Atypical Chronic Myeloid Leukemia (aCML) in September 2016 (WBC 37,000 on 8/23/16) - classed as an MPN. ("Looks" like CML, but no Philadelphia chromosome.) High neutrophils, thrombocytopenia (platelets have drifted down from roughly 130-140 in Sept. to 96 and a few 80's in April-May
Acml
in
Leukaemia Support
7 years ago
Atypical CML / MPN
Hi, (Age 69 yrs + 9 mos now) I was diagnosed with Atypical Chronic Myeloid Leukemia (aCML) in September 2016 (WBC 37,000 on 8/23/16) - classed as an MPN. ("Looks" like CML, but no Philadelphia chromosome.) High neutrophils, thrombocytopenia (platelets have drifted down from roughly 130-140 in Sept.
Hi, (Age 69 yrs + 9 mos now) I was diagnosed with Atypical Chronic Myeloid Leukemia (aCML) in September 2016 (WBC 37,000 on 8/23/16) - classed as an MPN. ("Looks" like CML, but no Philadelphia chromosome.) High neutrophils, thrombocytopenia (platelets have drifted down from roughly 130-140 in Sept.
Acml
in
Fight MPN
7 years ago
arterial arteritis
Hi all, I have just joined . I was was diagnosed with pmr 17months ago and am on 7mg of predisolone every 2nd day and managing. However I have recently been experiencing headaches, problems reading and an excelleration of most of the symptoms and I am suspecting arterial arteritis. Appointment with gp
Hi all, I have just joined . I was was diagnosed with pmr 17months ago and am on 7mg of predisolone every 2nd day and managing. However I have recently been experiencing headaches, problems reading and an excelleration of most of the symptoms and I am suspecting arterial arteritis. Appointment with gp
blackstone1
in
PMRGCAuk
7 years ago
Leeds Forum
Hi everyone I would like to that Maz and her team for organising the Patients forum in Leeds yesterday. It was a great day full of information from Maz and the specialist Drs and nurses. Chris did a fantastic speech about his journey through MF and a Bone marrow transplant. I was diagnosed with MF last
Hi everyone I would like to that Maz and her team for organising the Patients forum in Leeds yesterday. It was a great day full of information from Maz and the specialist Drs and nurses. Chris did a fantastic speech about his journey through MF and a Bone marrow transplant. I was diagnosed with MF last
Skye333
in
MPN Voice
7 years ago
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