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Experiences with
Gaucher disease type 3 (GD3)
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Lupus AND lyme disease?
Any lupus warriors here who have had Lyme disease and if so can you share your experience? I have sle and am on methotrexate, hydroxycloriquine and prednisolone— I went on a backpacking trip 4 weeks ago and ended up with a bite that developed into a bullseye rash. Before I knew what it was I started
Any lupus warriors here who have had Lyme disease and if so can you share your experience? I have sle and am on methotrexate, hydroxycloriquine and prednisolone— I went on a backpacking trip 4 weeks ago and ended up with a bite that developed into a bullseye rash. Before I knew what it was I started
ShannonB
in
LUPUS UK
22 days ago
GCA and aneurysms
I had a chest CT scan and read the results on MyChart. They found a 4.6 aneurysmal dilation in my ascending aorta. I sent a message to my doctor yesterday regarding this and I have heard nothing! I’m quite anxious and surprised to not have heard anything back yet. I guess I’m just wondering if my
I had a chest CT scan and read the results on MyChart. They found a 4.6 aneurysmal dilation in my ascending aorta. I sent a message to my doctor yesterday regarding this and I have heard nothing! I’m quite anxious and surprised to not have heard anything back yet. I guess I’m just wondering if my
luv2read
in
PMRGCAuk
22 days ago
stabbing pain inProstate
Good morning to all I have been on Erleada and Degarelix for 15 months without much side effects ( except for hot flashes and tiredness) My PSA last month was 0.13 and my Test was 1.0 Gleason 4+3 Metastatic with diffused bone metastases. For the last few days I feel some stabbing pain in my prostate
Good morning to all I have been on Erleada and Degarelix for 15 months without much side effects ( except for hot flashes and tiredness) My PSA last month was 0.13 and my Test was 1.0 Gleason 4+3 Metastatic with diffused bone metastases. For the last few days I feel some stabbing pain in my prostate
Raminagrobis
in
Advanced Prostate Cancer
22 days ago
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To PET or not to PET
I have been on nubeqa and orgovyx for over six months now. Blood draw this week shows my PSA level at <.10 beginning 30 days of starting those two drugs. My MO suggested I have a regular PET scan. No need for a PSMA scan because my PSA is basically undetectable. I am having trouble rationalizing the
I have been on nubeqa and orgovyx for over six months now. Blood draw this week shows my PSA level at <.10 beginning 30 days of starting those two drugs. My MO suggested I have a regular PET scan. No need for a PSMA scan because my PSA is basically undetectable. I am having trouble rationalizing the
Jvaughan0
in
Advanced Prostate Cancer
22 days ago
PSA 1.175 Down from 21, 6 weeks ago. Is this good ?
After 6 weeks only on orgovyx my PSA has dropped to 1.175 from 21 and testosterone to 25 from 400. Are these numbers ok ? I read many here say their testosterone numbers are much lower - in single digits. Hence I am wondering if I should switch to Firmagon and see if they drop more. Do testosterone
After 6 weeks only on orgovyx my PSA has dropped to 1.175 from 21 and testosterone to 25 from 400. Are these numbers ok ? I read many here say their testosterone numbers are much lower - in single digits. Hence I am wondering if I should switch to Firmagon and see if they drop more. Do testosterone
Simpson80
in
Advanced Prostate Cancer
22 days ago
PSA rising after salvage RT. What next?
My PSA is low but on the rise. <.006 in January and .042 now. I'm not on ADT. See bio for history. I hate to stand on the sidelines and watch it rise. Is there something I can do, or do I have to wait until PSA rises then have a scan? What is SOC? Your comments are appreciated.
My PSA is low but on the rise. <.006 in January and .042 now. I'm not on ADT. See bio for history. I hate to stand on the sidelines and watch it rise. Is there something I can do, or do I have to wait until PSA rises then have a scan? What is SOC? Your comments are appreciated.
SCreader
in
Advanced Prostate Cancer
22 days ago
Zanu treatment
Hey y’all, Almost 3 weeks of Zanu. Bloodwork is “as expected “ for first line treatment, WBC 220 and Hemo 9. Feeling pretty good, most lymph node pain gone, more energy! Still have manageable side effects, diarrhea, nausea. Feeling really good about this treatment! Have a great day🤗
Hey y’all, Almost 3 weeks of Zanu. Bloodwork is “as expected “ for first line treatment, WBC 220 and Hemo 9. Feeling pretty good, most lymph node pain gone, more energy! Still have manageable side effects, diarrhea, nausea. Feeling really good about this treatment! Have a great day🤗
Nana1961
in
CLL Support
22 days ago
New guidelines to prevent skeletal events in metastatic prostate cancer
They are basically discussing denosumab and zoledronic acid in PCa with bone metastasis https://www.urotoday.com/video-lectures/nccn-2024/video/4222-2024-nccn-guidelines-preventing-skeletal-events-in-prostate-cancer-rashid-sayyid-zachary-klaassen.html
They are basically discussing denosumab and zoledronic acid in PCa with bone metastasis https://www.urotoday.com/video-lectures/nccn-2024/video/4222-2024-nccn-guidelines-preventing-skeletal-events-in-prostate-cancer-rashid-sayyid-zachary-klaassen.html
Maxone73
in
Advanced Prostate Cancer
23 days ago
Intrinsic factor blood test
I had a blood test and got the result today - I haven't a clue what this means?? Any ideas? Intrinsic factor antibody level Intrinsic factor antibody level < 0.5 U/mL [0.0 - 6.9]; Negative <7 Equivocal 7 - 10 Positive >10 I can't even work out which part of the above is the result? I receive B12
I had a blood test and got the result today - I haven't a clue what this means?? Any ideas? Intrinsic factor antibody level Intrinsic factor antibody level < 0.5 U/mL [0.0 - 6.9]; Negative <7 Equivocal 7 - 10 Positive >10 I can't even work out which part of the above is the result? I receive B12
Loobs39
in
Pernicious Anaemia Society
23 days ago
GCA and type 2 diabetes
Hi all Warriors Since being on prednisone (since July 2023 at 60mg, now at l6mg) my A1C has slowly crept up. Had blood work yesterday and A1C is now at 7.1. I have been told by my rheumy this is steroid induced and will start going down as I taper. Even though I have been tapering by 1mg every 2
Hi all Warriors Since being on prednisone (since July 2023 at 60mg, now at l6mg) my A1C has slowly crept up. Had blood work yesterday and A1C is now at 7.1. I have been told by my rheumy this is steroid induced and will start going down as I taper. Even though I have been tapering by 1mg every 2
Groda
in
PMRGCAuk
8 months ago
No Success with Renadyl for me....
Hello: Just wanted to post my experience with taking Renadyl. First, my Nephrologist never recommended it and I wondered why? Of course, if this did work for me, he couldn't recommend dialysis or a transplant and make money from it. A Renal Dietitian did recommend it. I tried Renadyl for six months but
Hello: Just wanted to post my experience with taking Renadyl. First, my Nephrologist never recommended it and I wondered why? Of course, if this did work for me, he couldn't recommend dialysis or a transplant and make money from it. A Renal Dietitian did recommend it. I tried Renadyl for six months but
FelineFandom146
in
Early CKD Support
23 days ago
Thyroidectomy for Graves Disease
I’ve learned so much about Grave’s disease and TED here. This popped up on Medscape today: https://www.medscape.com/viewarticle/1001236? Know Your Options: Thyroidectomy for Graves Disease. It’s lengthy, and a pretty good discussion of options, including their frustration that they are only treating
I’ve learned so much about Grave’s disease and TED here. This popped up on Medscape today: https://www.medscape.com/viewarticle/1001236? Know Your Options: Thyroidectomy for Graves Disease. It’s lengthy, and a pretty good discussion of options, including their frustration that they are only treating
Poniesrfun
in
Thyroid UK
23 days ago
Cortisol help please
Been feeling really tired for about 6 months and trying to work out why. The last thing I had added before this was testosterone to existing HRT, so I stopped that again about 4 months ago, so not an effect of that now. I take T3 only, have not changed dose for some time and my results are towards top
Been feeling really tired for about 6 months and trying to work out why. The last thing I had added before this was testosterone to existing HRT, so I stopped that again about 4 months ago, so not an effect of that now. I take T3 only, have not changed dose for some time and my results are towards top
AKatieD
in
Thyroid UK
23 days ago
If anyone is interested, my wife Beatrice interviewed me for the Young Onset Parkinson's Network newspaper
If you want to see the recording of the interview, please connect to our YouTube channel: https://www.youtube.com/@nosilverbullet4pd998/videos If you want to know more about NoSilverBullet4PD, the Parkinson's support group that is co-managed by Mark Limebear and myself, please visit our website: https
If you want to see the recording of the interview, please connect to our YouTube channel: https://www.youtube.com/@nosilverbullet4pd998/videos If you want to know more about NoSilverBullet4PD, the Parkinson's support group that is co-managed by Mark Limebear and myself, please visit our website: https
Michel0220
in
Cure Parkinson's
23 days ago
The dilemma of hypoalbuminemia
Hello everyone, I have a history of MPN for many years, I have noticed that my liver protein, total protein, albumin, and prealbumin levels are all frighteningly low in routine medical examinations. I even suspect that my C-reactive protein levels are low even when I am in an inflammatory state. Low
Hello everyone, I have a history of MPN for many years, I have noticed that my liver protein, total protein, albumin, and prealbumin levels are all frighteningly low in routine medical examinations. I even suspect that my C-reactive protein levels are low even when I am in an inflammatory state. Low
merlisa
in
MPN Voice
24 days ago
New to CKD recommendations
Hello. I was recently diagnosed with CKD stage 3, without a history of high blood pressure or diabetes. Any recommendations on amazing nephrologists in the San Francisco Bay Area or Sonoma County area greatly appreciated. Took the kidney class, and connecting with a nutritionist specializing in kidney
Hello. I was recently diagnosed with CKD stage 3, without a history of high blood pressure or diabetes. Any recommendations on amazing nephrologists in the San Francisco Bay Area or Sonoma County area greatly appreciated. Took the kidney class, and connecting with a nutritionist specializing in kidney
minime_dh
in
Kidney Dialysis
24 days ago
First ADT holiday
25 July 2024. First ADT (hormone therapy) holiday since Dec22 ADT started 5Dec 2022 Leg weakness Started lifting weights etc Abiraterone started Aug 2023 + noticeable cognitive impairment
25 July 2024. First ADT (hormone therapy) holiday since Dec22 ADT started 5Dec 2022 Leg weakness Started lifting weights etc Abiraterone started Aug 2023 + noticeable cognitive impairment
Rob11111
in
Advanced Prostate Cancer
24 days ago
Just for kicks, I asked Bing AI what bassofspades thinks about Parkinsons disease. Here’s what it came up with.
**Bassofspades** is an active member on HealthUnlocked, particularly in the Cure Parkinson's community. They have shared their personal experiences and thoughts on living with Parkinson's disease. Here are some key points from their posts: 1. **Living with Parkinson's**: Bassofspades emphasizes the
**Bassofspades** is an active member on HealthUnlocked, particularly in the Cure Parkinson's community. They have shared their personal experiences and thoughts on living with Parkinson's disease. Here are some key points from their posts: 1. **Living with Parkinson's**: Bassofspades emphasizes the
bassofspades
in
Cure Parkinson's
24 days ago
prostate cancer that does not produce psa
Hi everyone. My dad’s PSA has always been low, so when he was diagnosed, we were very shocked. His team checks his PSA, although PSMA have been more telling for him. His PSA today is the highest it has ever been at 17. His last PSMA was better than the one before. Is it possible for prostate cancer
Hi everyone. My dad’s PSA has always been low, so when he was diagnosed, we were very shocked. His team checks his PSA, although PSMA have been more telling for him. His PSA today is the highest it has ever been at 17. His last PSMA was better than the one before. Is it possible for prostate cancer
Concerneddaughter123
in
Advanced Prostate Cancer
25 days ago
Liver pain?
I was diagnosed with compensated liver cirrhosis 7 weeks ago. My blood work and ultrasound look ok. I have been having these sharp pains in my liver area and sometimes on my left side also. It only lasts 10 seconds or so. My specialist says its not a symptom of cirrhosis. She says it could be stress
I was diagnosed with compensated liver cirrhosis 7 weeks ago. My blood work and ultrasound look ok. I have been having these sharp pains in my liver area and sometimes on my left side also. It only lasts 10 seconds or so. My specialist says its not a symptom of cirrhosis. She says it could be stress
Maddog2024
in
British Liver Trust
25 days ago
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