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Give your feedback to help us update our "Lupus: A Guide to Pregnancy" booklet
We're updating our "Guide to Pregnancy" booklet with the new medication guidelines, and we want to hear from you about what else we should include or think about to make sure a new version meets the needs of the lupus community. Complete our anonymous survey here: https://forms.gle/iPBShZxtoJdKaEsn7
We're updating our "Guide to Pregnancy" booklet with the new medication guidelines, and we want to hear from you about what else we should include or think about to make sure a new version meets the needs of the lupus community. Complete our anonymous survey here: https://forms.gle/iPBShZxtoJdKaEsn7
Debbie_kinsey
Administrator
in
LUPUS UK
2 months ago
Unstable Thyroid Function
For over 20 years my underactive thyroid function was stable -taking 125mg of levothyroxine daily. Last Summer it went haywire and became overactive. Medication was reduced to 100mg and by November it was stable. Now,the results of my requested blood test show it's underactive again and my medication
For over 20 years my underactive thyroid function was stable -taking 125mg of levothyroxine daily. Last Summer it went haywire and became overactive. Medication was reduced to 100mg and by November it was stable. Now,the results of my requested blood test show it's underactive again and my medication
doonicle
in
Thyroid UK
2 months ago
Raynaud's in nipples?
I've posted this in Lupus and the Raynaud's & Scleroderma groups, and no responses. Surely I can't be the only one?
I've posted this in Lupus and the Raynaud's & Scleroderma groups, and no responses. Surely I can't be the only one?
Brychni
in
NRAS
2 months ago
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Tackle Parkinson’s Tremor With Targeted Exercises
Hope these exercise might help some people https://www.myparkinsonsteam.com/resources/tackle-parkinsons-tremor-with-targeted-exercises
Hope these exercise might help some people https://www.myparkinsonsteam.com/resources/tackle-parkinsons-tremor-with-targeted-exercises
Farooqji
in
Cure Parkinson's
6 months ago
PSA rising with Pluvicto
My husband started on Pluvicto. Before first injection PSA was 52, and after a month it is 58. What to expect after second injestion?
My husband started on Pluvicto. Before first injection PSA was 52, and after a month it is 58. What to expect after second injestion?
IkeLuke
in
Advanced Prostate Cancer
6 months ago
windyway
Hi all I have pernicious anemia How much & how regular do I need B12 injections? I had 6 loading over 2 weeks in December /January and every 3 months ?? I’ve talked my dr into every 2 months is this enough ? I’m having heart palpitations/ irregular fast heart beats is this connected? I’ve read this
Hi all I have pernicious anemia How much & how regular do I need B12 injections? I had 6 loading over 2 weeks in December /January and every 3 months ?? I’ve talked my dr into every 2 months is this enough ? I’m having heart palpitations/ irregular fast heart beats is this connected? I’ve read this
Windyway
in
Pernicious Anaemia Society
2 months ago
Information required
Hi I have Rheumatoid Arthritis diagnosed last year I take Methotrexate. Recently had feet vibrating sensation and palpitations. I have regular blood tests my ESR has been going up a little my joint issues are not causing me an issue. I went to Walk in centre had range of tests ECG. xrays. Fine. Blòod
Hi I have Rheumatoid Arthritis diagnosed last year I take Methotrexate. Recently had feet vibrating sensation and palpitations. I have regular blood tests my ESR has been going up a little my joint issues are not causing me an issue. I went to Walk in centre had range of tests ECG. xrays. Fine. Blòod
welsh12
in
Thyroid UK
2 months ago
Creatine?
I have a new personal trainer who I am using to help build and maintain muscle mass. I am not yet on ADT (TBD), but I want to have good habits for strength training if indeed I end up going that way. He mentioned recently that he might recommend creatine to me. I did some brief research and it seems
I have a new personal trainer who I am using to help build and maintain muscle mass. I am not yet on ADT (TBD), but I want to have good habits for strength training if indeed I end up going that way. He mentioned recently that he might recommend creatine to me. I did some brief research and it seems
MakeItRainbows
in
Advanced Prostate Cancer
6 months ago
Pinostilbene inhibits the Enz-resistant CRPC cell line by inhibiting AR variant 7
i take pterostilbene daily which pinostilbene is a metabolite of pterostilbene. in any event if you are failing on enzalutamide or any PCa warrior you probably should take pterostilbene. Below is a 2023 in-depth article https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10550987/ Pinostilbene inhibits
i take pterostilbene daily which pinostilbene is a metabolite of pterostilbene. in any event if you are failing on enzalutamide or any PCa warrior you probably should take pterostilbene. Below is a 2023 in-depth article https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10550987/ Pinostilbene inhibits
KocoPr
in
Fight Prostate Cancer
6 months ago
PSA +
Is a PSA increase from .13 to .20 a concern? I'm on Eligard and Zytiga & Prednisone + Xgeva.
Is a PSA increase from .13 to .20 a concern? I'm on Eligard and Zytiga & Prednisone + Xgeva.
TommyCarz2
in
Advanced Prostate Cancer
6 months ago
Extravasation
We are writing to reach out to individuals who may have experienced an extravasation during their medical treatment. Many patients are unaware of this patient-safety issue and we are hoping to bring it to light. We are kindly asking that you contribute to enforcing a safer healthcare environment while
We are writing to reach out to individuals who may have experienced an extravasation during their medical treatment. Many patients are unaware of this patient-safety issue and we are hoping to bring it to light. We are kindly asking that you contribute to enforcing a safer healthcare environment while
Extravasation
in
Blue Faery Liver Cancer
6 months ago
Views on study design for lupus nephritis research
A research team are planning a study and want to get the views of people with lupus nephritis so they can make sure they are meeting patients’ needs in the study design. You can read more about the research in our article here: https://lupusuk.org.uk/views-on-study-design-for-lupus-nephritis-research
A research team are planning a study and want to get the views of people with lupus nephritis so they can make sure they are meeting patients’ needs in the study design. You can read more about the research in our article here: https://lupusuk.org.uk/views-on-study-design-for-lupus-nephritis-research
Debbie_kinsey
Administrator
in
LUPUS UK
3 months ago
Avodart and Flomax
Hello brothers. Is it safe to use Avodart and Flomax with advanced prostate cáncer? I am tired of getting up to pee 7 or 8 times a night.
Hello brothers. Is it safe to use Avodart and Flomax with advanced prostate cáncer? I am tired of getting up to pee 7 or 8 times a night.
CountryJoe
in
Advanced Prostate Cancer
6 months ago
Ozone treatments benefit Parkinson's, when my brother down two or three days 1/2 ozone really seems to energize him and clear his brain.
We are using about 1 LPM oxygen and getting about 12 Gamma ozone bubbled in olive oil and breathing in nose or mouth. We are usually intaking in mouth which also kills all mouth bacteria. Is any one using any other protocols with results.
We are using about 1 LPM oxygen and getting about 12 Gamma ozone bubbled in olive oil and breathing in nose or mouth. We are usually intaking in mouth which also kills all mouth bacteria. Is any one using any other protocols with results.
clarksdocs
in
Cure Parkinson's
6 months ago
Methotrexate and antibiotics
For anyone on methotrexate (presently or in the past), if you've had infections what antibiotics have you been prescribed? My sister has a UTI (symptoms only started today) but she took her methotrexate last night (she has rheumatoid arthritis so will also post on that site), and she's been prescribed
For anyone on methotrexate (presently or in the past), if you've had infections what antibiotics have you been prescribed? My sister has a UTI (symptoms only started today) but she took her methotrexate last night (she has rheumatoid arthritis so will also post on that site), and she's been prescribed
Grizzly-bear
in
Vasculitis UK
3 months ago
Hashimoto's and pain in muscles and joints
Hi I am new to the group.I am reaching out as I have a couple of questions.I have Hashimotos disease and on an alternating dose of 125mg to 150mg each other day of levothyroxin. I have experienced muscle aches and pains over the last 7 or so years not really sure why but I believe it's my Hashimoto's.My
Hi I am new to the group.I am reaching out as I have a couple of questions.I have Hashimotos disease and on an alternating dose of 125mg to 150mg each other day of levothyroxin. I have experienced muscle aches and pains over the last 7 or so years not really sure why but I believe it's my Hashimoto's.My
Hashiskip18
in
Thyroid UK
3 months ago
Involvement Opportunity - British Liver Trust Patient Advisory Group (UK)
Our Patient Advisory Group (PAG) helps us to serve the full, diverse nature of the UK’s liver disease community. It ensures the patient voice is embedded even more in key strategy and decision-making processes. At the moment we are underrepresented in some areas and we are looking for people to join
Our Patient Advisory Group (PAG) helps us to serve the full, diverse nature of the UK’s liver disease community. It ensures the patient voice is embedded even more in key strategy and decision-making processes. At the moment we are underrepresented in some areas and we are looking for people to join
BritishLiverTrust1
Partner
in
British Liver Trust
6 months ago
Lupus or another Autoimmune Disease?
I’m 50 yr old female with issues, RLS, Hashimotos, Autoimmune Atrophic Chronic Gastritis, intestinal Metaplasia, Iron Deficiency Anemia w/transfusions, B12 deficiency, and now this horrible hip and joint pain. I know if you have one Autoimmune Disease you’re likely to have more. I’ve had a full work
I’m 50 yr old female with issues, RLS, Hashimotos, Autoimmune Atrophic Chronic Gastritis, intestinal Metaplasia, Iron Deficiency Anemia w/transfusions, B12 deficiency, and now this horrible hip and joint pain. I know if you have one Autoimmune Disease you’re likely to have more. I’ve had a full work
Milescircus
in
LUPUS UK
3 months ago
Malar Rash
Hi guys I was wondering what your opinion of this rash is? Does it look like a lupus rash? I’m in the MCTD and I’m on methotrexate and hydroxychloroquine. I get these rashes in a variety of different ways, always driven by sun, heat, stress or medications. Are there any other autoimmune disorders
Hi guys I was wondering what your opinion of this rash is? Does it look like a lupus rash? I’m in the MCTD and I’m on methotrexate and hydroxychloroquine. I get these rashes in a variety of different ways, always driven by sun, heat, stress or medications. Are there any other autoimmune disorders
Tonkie
in
LUPUS UK
3 months ago
filgotinib dosage
hi everyone, Feel a bit embarrassed with this post,as was so cock a hoop of results on filgotinib,telling all it was a miracle drug!It was and life was brilliant without pain.Because of age dr persey decreased from 200mg to 100 mg 4 weeks ago and pain has all come back.It was so good while it lasted
hi everyone, Feel a bit embarrassed with this post,as was so cock a hoop of results on filgotinib,telling all it was a miracle drug!It was and life was brilliant without pain.Because of age dr persey decreased from 200mg to 100 mg 4 weeks ago and pain has all come back.It was so good while it lasted
Doodlereggie
in
NRAS
6 months ago
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