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Gaucher disease type 2 (GD2)
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Hydroxychloroquine toxic retinopathy
Hi. I have had Lupus for 22 years and been on Hydroxychloroquine 400mg daily since then plus 2mg Prednisolone. Recent eye tests have shown that the Hydroxy is affecting the retina. I was warned at the outset, that it can affect eyes, but it still a bit of a shock. Opthamology Consultant says I must
Hi. I have had Lupus for 22 years and been on Hydroxychloroquine 400mg daily since then plus 2mg Prednisolone. Recent eye tests have shown that the Hydroxy is affecting the retina. I was warned at the outset, that it can affect eyes, but it still a bit of a shock. Opthamology Consultant says I must
Juniperm
in
LUPUS UK
2 months ago
Paul's last day today
Today is Paul Howard's last day at LUPUS UK after 13 years at the charity. Please join us in sending him our very best wishes for the future. Thank you for everything you have done for the lupus community. You will be very much missed!
Today is Paul Howard's last day at LUPUS UK after 13 years at the charity. Please join us in sending him our very best wishes for the future. Thank you for everything you have done for the lupus community. You will be very much missed!
Debbie_kinsey
Administrator
in
LUPUS UK
2 months ago
6 years now and PSA <0.01 is it time for a vacation?
Hello, after chemotherapy, STRT of the prostate, I have been taking Eligard hormone therapy for 6 years now and PSA <0.01 is it time for a vacation?
Hello, after chemotherapy, STRT of the prostate, I have been taking Eligard hormone therapy for 6 years now and PSA <0.01 is it time for a vacation?
Vasili
in
Advanced Prostate Cancer
6 months ago
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Benfotiamine In The Mix For PD Again?
The following new animal study (December 2023) suggests that the fat soluble form of vitamin B1, Benfotiamine, may also be suitable for PD : https://www.sciencedirect.com/science/article/abs/pii/S0014299923007483?via%3Dihub Here is a relevant study quote :
' The results demonstrated that treatment
The following new animal study (December 2023) suggests that the fat soluble form of vitamin B1, Benfotiamine, may also be suitable for PD : https://www.sciencedirect.com/science/article/abs/pii/S0014299923007483?via%3Dihub Here is a relevant study quote :
' The results demonstrated that treatment
chartist
in
Cure Parkinson's
6 months ago
Plant-based raw food diet eases symptoms of SLE, Sjögren’s: Report
More research needed into diet's role in autoimmune disease Three women with the autoimmune conditions systemic lupus erythematosus (SLE) and Sjögren’s syndrome saw their symptoms ease after starting a diet rich in plant-based raw foods, according to a recent case series report. The diet included
More research needed into diet's role in autoimmune disease Three women with the autoimmune conditions systemic lupus erythematosus (SLE) and Sjögren’s syndrome saw their symptoms ease after starting a diet rich in plant-based raw foods, according to a recent case series report. The diet included
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
2 months ago
Serum cortisol test results
Hello all, Further to my saliva cortisol test (link to post below), I requested a serum cortisol test at my GPs (8.45am, yesterday): Serum cortisol level 381 nmol/L >350 nmol/L makes adrenal insufficiency unlikely Is this in keeping with my less-than-optimal-and-occasionally-below-range saliva results
Hello all, Further to my saliva cortisol test (link to post below), I requested a serum cortisol test at my GPs (8.45am, yesterday): Serum cortisol level 381 nmol/L >350 nmol/L makes adrenal insufficiency unlikely Is this in keeping with my less-than-optimal-and-occasionally-below-range saliva results
J972
in
Thyroid UK
6 months ago
Getting tested after taking any supplements...
Hi there, I found this information after worrying that I have lost my mind due to GP responses, on top of all of my very B12 like symptoms, Inc. Neurological. How I felt was gradual at first and more like fatigue and gastic upsets, intermittent mild tingling, over the last few years, but last year my
Hi there, I found this information after worrying that I have lost my mind due to GP responses, on top of all of my very B12 like symptoms, Inc. Neurological. How I felt was gradual at first and more like fatigue and gastic upsets, intermittent mild tingling, over the last few years, but last year my
Suffering_sunny
in
Pernicious Anaemia Society
2 months ago
When to do certain blood tests and why.
Just coming up on my 6 month anniversary of radiation and my 2 months prior to radiation and 4 months post Lupron while on radiation. So I have been off Lupron for 2 months. I had my annual physical yesterday and my GP had ordered complete blood panel with thyroid and PSA. There were no issues with blood
Just coming up on my 6 month anniversary of radiation and my 2 months prior to radiation and 4 months post Lupron while on radiation. So I have been off Lupron for 2 months. I had my annual physical yesterday and my GP had ordered complete blood panel with thyroid and PSA. There were no issues with blood
Mgtd
in
Advanced Prostate Cancer
6 months ago
unexplained chest pain and shortness of breath .
had a problem with chest pain and breathless ness did all the checks and could find out where it came from. Wondered if this was another by product of rheumatoid arthritis?
had a problem with chest pain and breathless ness did all the checks and could find out where it came from. Wondered if this was another by product of rheumatoid arthritis?
Susiequest
in
NRAS
1 month ago
intrinsic factor test
My GP agreed to do an intrinsic factor antibody test. The test he did was IgA and the results came back as within normal range.1.10gl normal range 0.8 to 4.0 . Was this the correct test for pernicious anemia? Thank you
My GP agreed to do an intrinsic factor antibody test. The test he did was IgA and the results came back as within normal range.1.10gl normal range 0.8 to 4.0 . Was this the correct test for pernicious anemia? Thank you
Painttube
in
Pernicious Anaemia Society
6 months ago
Currently in phase 1 but promising: Bispecific Antibody Programs and IL-12 Cytokine, XmAb662
early results are positive on solid tumors, including prostate https://www.pharmaceutical-technology.com/data-insights/xmab-662-xencor-metastatic-castration-resistant-prostate-cancer-mcrpc-likelihood-of-approval-2/ Thanks mhamle01 !!
early results are positive on solid tumors, including prostate https://www.pharmaceutical-technology.com/data-insights/xmab-662-xencor-metastatic-castration-resistant-prostate-cancer-mcrpc-likelihood-of-approval-2/ Thanks mhamle01 !!
Maxone73
in
Advanced Prostate Cancer
6 months ago
Scans other than PSMA for PC
My husband’s PSA continues to rise yet his PSMA scans are all clear. His last PSMA was late October with a PSA of 4.7 His PSA today was 6.5 It seems I have noted on this forum some other type scans should be done besides PSMA. His ALK PHOSPHATE is 85 (normal) Calcium levels all normal. Thanks
My husband’s PSA continues to rise yet his PSMA scans are all clear. His last PSMA was late October with a PSA of 4.7 His PSA today was 6.5 It seems I have noted on this forum some other type scans should be done besides PSMA. His ALK PHOSPHATE is 85 (normal) Calcium levels all normal. Thanks
JolleySprings
in
Advanced Prostate Cancer
6 months ago
Should I be concerned about a PSA of 0.53 after SBRT treatment for one spot.
After 18 months of undetectable PSA (after ADT & 44 IMRT treatments) , my PSA started to rise this summer and was 2.66 at it's highest. My RO send me for a PSMA- Pet scan and he found one spot on T-10. 5 treatment with SBRT in Oct - Nov and now on Dec 6th my PSA was tested to
0.53.
Should
After 18 months of undetectable PSA (after ADT & 44 IMRT treatments) , my PSA started to rise this summer and was 2.66 at it's highest. My RO send me for a PSMA- Pet scan and he found one spot on T-10. 5 treatment with SBRT in Oct - Nov and now on Dec 6th my PSA was tested to
0.53.
Should
VCinTx
in
Advanced Prostate Cancer
6 months ago
Pork, Autoimmune Disease, and Parkinson's?
So... I have posted on my belief that PD is an autoimmune disease before: Is Parkinson's Disease an Autoimmune Disorder? https://healthunlocked.com/cure-parkinsons/posts/147142599/is-parkinson-s-disease-an-autoimmune-disorder And... (surprisingly) I have not posted on the fact that the only meat I
So... I have posted on my belief that PD is an autoimmune disease before: Is Parkinson's Disease an Autoimmune Disorder? https://healthunlocked.com/cure-parkinsons/posts/147142599/is-parkinson-s-disease-an-autoimmune-disorder And... (surprisingly) I have not posted on the fact that the only meat I
Bolt_Upright
in
Cure Parkinson's
2 months ago
HRT and B12
So I went to see an actual Doctor, having been diagnosed with PA by the nurses last summer, with a B12 level of 143.His opening gambit, having looked at the September blood results, serum vitamin B12 = 496, was "You do not have Pernicious Anemia!" Stupid me hadn't SId for 4 days, because I wanted the
So I went to see an actual Doctor, having been diagnosed with PA by the nurses last summer, with a B12 level of 143.His opening gambit, having looked at the September blood results, serum vitamin B12 = 496, was "You do not have Pernicious Anemia!" Stupid me hadn't SId for 4 days, because I wanted the
Oneash
in
Pernicious Anaemia Society
2 months ago
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
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
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
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