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NICE: Teprotumumab for treating thyroid eye disease ID 6432 - being scoped
I have just noticed a new NICE guideline has been started. Only a skeleton at present - in the guideline scoping state. It will probably be years before it is completed. It is good that it has been selected for further work but must be devastating for anyone suffering TED to see how far away this (potential
I have just noticed a new NICE guideline has been started. Only a skeleton at present - in the guideline scoping state. It will probably be years before it is completed. It is good that it has been selected for further work but must be devastating for anyone suffering TED to see how far away this (potential
helvella
Thyroid UK
in
Thyroid UK
3 days ago
Polyneuropathy.
I treat my polyneuropathy with B6 and B12. GracePV shared their experience with B6, B12 nd B1. This inspired me to revisit my self treatment of my polyneuropathy. I came across information about Benfotiamine which is similar to Thiamine Hydrochloride and Thiamine Nitrate. There are indications
I treat my polyneuropathy with B6 and B12. GracePV shared their experience with B6, B12 nd B1. This inspired me to revisit my self treatment of my polyneuropathy. I came across information about Benfotiamine which is similar to Thiamine Hydrochloride and Thiamine Nitrate. There are indications
WIZARD6787
in
Pernicious Anaemia Society
7 days ago
PV & Gene Editing for Sickle cell anemia
Has anyone been following the latest news on treatment for sickle cell anemia? Since many of us are treated with hydroxyurea which is approved for sickle cell anemia, I was wondering if this may be in our future? "The F.D.A. approved the first gene editing therapy ever, for sickle cell disease, a debilitating
Has anyone been following the latest news on treatment for sickle cell anemia? Since many of us are treated with hydroxyurea which is approved for sickle cell anemia, I was wondering if this may be in our future? "The F.D.A. approved the first gene editing therapy ever, for sickle cell disease, a debilitating
ERei
in
MPN Voice
5 months ago
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Haematologists consultant
Hi I’ve been trying to get help with my Pernicious anemia diagnosis which my mum & sister had they have both passed away now, but the drs are not helping I only got diagnosed through me asking for further tests after they initially told me my B12 was high 2000 so I wasn’t deficient!! , my dr didn’t
Hi I’ve been trying to get help with my Pernicious anemia diagnosis which my mum & sister had they have both passed away now, but the drs are not helping I only got diagnosed through me asking for further tests after they initially told me my B12 was high 2000 so I wasn’t deficient!! , my dr didn’t
Windyway
in
Pernicious Anaemia Society
25 days ago
Blood Work
Hello Friends, I asked this question on my original thread but someone suggested I start a new one. I was diagnosed with Autoimmune Atrophic Gastritis 2 weeks ago and have been having a hard time mentally . My family Dr this past Friday sends me the blood tests results and says they cannot comment
Hello Friends, I asked this question on my original thread but someone suggested I start a new one. I was diagnosed with Autoimmune Atrophic Gastritis 2 weeks ago and have been having a hard time mentally . My family Dr this past Friday sends me the blood tests results and says they cannot comment
Canadian77
in
Pernicious Anaemia Society
1 month ago
Anyone’s thoughts on milk thistle?https://thyroidpatients.ca/2022/01/16/milk-thistle-thyroid-transport/amp/
I am on a hormone group someone has shared this I’ve been using milk thistle organic oil orally with vitamin e it doesn’t seem to have had any negative effects on myself thankyou in advance
I am on a hormone group someone has shared this I’ve been using milk thistle organic oil orally with vitamin e it doesn’t seem to have had any negative effects on myself thankyou in advance
Joannak
in
Thyroid UK
7 months ago
Has anyone navigated Medicare while trying to get the TPIAT?
Hi All 👋 We recently had a patient reach out to us about the TPIAT while on Medicare. Medicare covers the removal of the pancreas, but it does not cover the islet cell transplantation; the patient was quoted $70K for the islet cell transplantation. 🙁 They ask that anyone who has also navigated the
Hi All 👋 We recently had a patient reach out to us about the TPIAT while on Medicare. Medicare covers the removal of the pancreas, but it does not cover the islet cell transplantation; the patient was quoted $70K for the islet cell transplantation. 🙁 They ask that anyone who has also navigated the
Skye_MC
Administrator
in
Chronic Pancreatitis Support
7 months ago
Vasculitus, a promising road ahead- let’s hope so!
https://www.thelancet.com/journals/lanrhe/article/PIIS2665-9913(24)00094-8/fulltext?dgcid=raven_jbs_aip_email ‘…Biologics have come to the forefront as glucocorticoid-sparing agents. After the seminal GiACTA trial, tocilizumab is now recommended as a first-line therapy for giant cell arteritis in combination
https://www.thelancet.com/journals/lanrhe/article/PIIS2665-9913(24)00094-8/fulltext?dgcid=raven_jbs_aip_email ‘…Biologics have come to the forefront as glucocorticoid-sparing agents. After the seminal GiACTA trial, tocilizumab is now recommended as a first-line therapy for giant cell arteritis in combination
Exflex
in
PMRGCAuk
11 days ago
Question on PMR and Temporal Arteritis
Does anyone know: would an MRI show Temporal Arteritis or would a person need a biopsy to determine if Temporal Arteritis was present? Asking for a person newly diagnosed with PMR and in the ER dept was told she had Temporal Arteritis. Yesterday she went to the rheumatologist and was told she definitely
Does anyone know: would an MRI show Temporal Arteritis or would a person need a biopsy to determine if Temporal Arteritis was present? Asking for a person newly diagnosed with PMR and in the ER dept was told she had Temporal Arteritis. Yesterday she went to the rheumatologist and was told she definitely
Musiclady18
in
PMRGCAuk
22 days ago
Patients with higher apolipoprotein A-I levels at greater risk for giant cell arteritis
https://www.healio.com/news/rheumatology/20240315/patients-with-higher-apolipoprotein-ai-levels-at-greater-risk-for-giant-cell-arteritis
https://www.healio.com/news/rheumatology/20240315/patients-with-higher-apolipoprotein-ai-levels-at-greater-risk-for-giant-cell-arteritis
perceptual63
in
PMRGCAuk
1 month ago
Tapering
Just a quick question about tapering Prednisolone. I have had GCA since Aug 22. Have tapered down to 5mg but had the beginnings of a flare. My rheumatologist told me to go up to 7.5mg. The flare abated. I then got an infection/virus and on the advice of the rheumatology nurses increased to 10mg for a
Just a quick question about tapering Prednisolone. I have had GCA since Aug 22. Have tapered down to 5mg but had the beginnings of a flare. My rheumatologist told me to go up to 7.5mg. The flare abated. I then got an infection/virus and on the advice of the rheumatology nurses increased to 10mg for a
Noni71
in
PMRGCAuk
2 months ago
Aortitis
I was diagnosed with non cranial Giant Cell Arteritis in September last year. So far I haven't managed to find anyone else with this condition because most people have the temporal version with the headaches.Mine is Aortitis which apparently is rare. I'd love to share experiences with someone else
I was diagnosed with non cranial Giant Cell Arteritis in September last year. So far I haven't managed to find anyone else with this condition because most people have the temporal version with the headaches.Mine is Aortitis which apparently is rare. I'd love to share experiences with someone else
Dance62
in
PMRGCAuk
2 months ago
How often to Self Inject
Hello all. I was just wondering what you all think about how often we should inject with Vit B12. I had been taking shots since about last Dec of 22, but even though it helped, didn't help much. So after finally being diagnosed with PA, I told my wife to inject me every day for 30 days to sort of give
Hello all. I was just wondering what you all think about how often we should inject with Vit B12. I had been taking shots since about last Dec of 22, but even though it helped, didn't help much. So after finally being diagnosed with PA, I told my wife to inject me every day for 30 days to sort of give
MrJustatip
in
Pernicious Anaemia Society
6 months ago
Should I switch SSRIs?
Hi all, I’ve been on sertraline for around 14 years on varying dosages. Most recently I was on 150mg, but over the past few weeks I’ve been coming down and I’m now on 50mg, in preparation for a switch to Paroxetine. I take sertraline as I was originally diagnosed with OCD and also had an eating disorder
Hi all, I’ve been on sertraline for around 14 years on varying dosages. Most recently I was on 150mg, but over the past few weeks I’ve been coming down and I’m now on 50mg, in preparation for a switch to Paroxetine. I take sertraline as I was originally diagnosed with OCD and also had an eating disorder
Griffo_
in
Thyroid UK
9 months ago
hot flushes
I’ve struggled with these for about twenty years and they have diminished over time. However, since going on preds, just over five weeks ago, they have got worse. Nothing like when they were at their worst when I was younger, but boy do they wake me up, when my sleep is pretty poor anyway, since the
I’ve struggled with these for about twenty years and they have diminished over time. However, since going on preds, just over five weeks ago, they have got worse. Nothing like when they were at their worst when I was younger, but boy do they wake me up, when my sleep is pretty poor anyway, since the
Freshairfiend
in
PMRGCAuk
4 months ago
Charity request for help: GCA patients in England
Dear members with GCA, as you may be aware, NICE and NHS England don't currently allow repeat treatment with tocilizumab for GCA patients who relapse. This means that if you live in England and you've had a year's treatment with tocilizumab, you won't be prescribed it again. However, a recent study
Dear members with GCA, as you may be aware, NICE and NHS England don't currently allow repeat treatment with tocilizumab for GCA patients who relapse. This means that if you live in England and you've had a year's treatment with tocilizumab, you won't be prescribed it again. However, a recent study
Fran_Benson
Partner
in
PMRGCAuk
4 months ago
The Bone-Marrow-Transplant Revolution
https://www.theatlantic.com/health/archive/2024/04/bone-marrow-transplant-mismatched-donor/678100/
https://www.theatlantic.com/health/archive/2024/04/bone-marrow-transplant-mismatched-donor/678100/
EastBayDad
in
CLL Support
8 days ago
Tocilizumab
I have had a BCC removed from the side of my nose. One of my rheumatology nurses told me that there is an incidence of Tocilizumab causing cancerous growths. It did pop up out of nowhere and I was shocked when the dermatologist told me that it was a slow growing cancer. Has anyone heard of this link?
I have had a BCC removed from the side of my nose. One of my rheumatology nurses told me that there is an incidence of Tocilizumab causing cancerous growths. It did pop up out of nowhere and I was shocked when the dermatologist told me that it was a slow growing cancer. Has anyone heard of this link?
Noni71
in
PMRGCAuk
5 months ago
Stem cell transplant
I haven’t posted for a while as things have gotten very complicated for me recently my partner was diagnosed with stomach cancer and around the same time I ran out of options and stem is my last shot I have held off as long as I can so my partner could have surgery and get back on his feet but my dates
I haven’t posted for a while as things have gotten very complicated for me recently my partner was diagnosed with stomach cancer and around the same time I ran out of options and stem is my last shot I have held off as long as I can so my partner could have surgery and get back on his feet but my dates
Leighcox85
in
MPN Voice
11 days ago
Platelets dropped after obinituzumab and won't rise even after transfusion 🚨
Dear all, First of all, thank you very much for all the help and care I have always found on HealthUnlocked. I had my first infusion of obinituzumab and in my case, mainly due to my nephrotic syndrome kidney problem, I had a few problems. High fevers, which are common Attacks of hiccups that last
Dear all, First of all, thank you very much for all the help and care I have always found on HealthUnlocked. I had my first infusion of obinituzumab and in my case, mainly due to my nephrotic syndrome kidney problem, I had a few problems. High fevers, which are common Attacks of hiccups that last
BMFCDRW
in
CLL Support
12 days ago
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