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I just found out the cause of my autoimmune chronic pancreatitis and it’s not good. I have Sjögren’s syndrome.
it’s effecting my other organs too. I have osteoporosis, not from prednisone but from lack of nutrients from the pancreatitis. I need to go on a steroid to help stop my body from effecting multiple lungs, kidney’s, liver and pancreas. I have 4 cysts on my pancreas too. I had lymphoma from Sjogren’s
it’s effecting my other organs too. I have osteoporosis, not from prednisone but from lack of nutrients from the pancreatitis. I need to go on a steroid to help stop my body from effecting multiple lungs, kidney’s, liver and pancreas. I have 4 cysts on my pancreas too. I had lymphoma from Sjogren’s
Joanhappy21
in
Chronic Pancreatitis Support
3 months ago
Covid and prednisone
Hi, Covid finally got me 10 days ago for the first time and today I'm still testing positive and I'm still isolating from everyone else in the house. Prior to getting Covid, I've been on DL's 5 week taper with me being at the 5 week mark of 12 mg's that began two weeks ago Sunday. By Thursday of that
Hi, Covid finally got me 10 days ago for the first time and today I'm still testing positive and I'm still isolating from everyone else in the house. Prior to getting Covid, I've been on DL's 5 week taper with me being at the 5 week mark of 12 mg's that began two weeks ago Sunday. By Thursday of that
perceptual63
in
PMRGCAuk
3 months ago
Been on Firmagon with Zytiga and Prednisone PSA rising, what can I do next?
Information in Bio Hoping to try a PARP inhibitor or Provenge perhaps, I don’t know much about this, but my medical oncologist keeps mentioning pluvicto, I’m not interested in doing that yet. Information from Bio below: Diagnosed 07/01/2022 Diagnosed By PSA Score 942.40 06/24-2022-07/06/2022
Information in Bio Hoping to try a PARP inhibitor or Provenge perhaps, I don’t know much about this, but my medical oncologist keeps mentioning pluvicto, I’m not interested in doing that yet. Information from Bio below: Diagnosed 07/01/2022 Diagnosed By PSA Score 942.40 06/24-2022-07/06/2022
Shorehousejam
in
Advanced Prostate Cancer
3 months ago
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Could this be Ernest syndrome?
Is anyone familiar with Ernest syndrome? I was reading that it is similar to GCA symptoms. I know I am grasping at straws but since the prednisone is not working, just trying to see ifbthere maybe another explanation. The pain in my temples,jaws and back of head are worse than. Ever before.
Is anyone familiar with Ernest syndrome? I was reading that it is similar to GCA symptoms. I know I am grasping at straws but since the prednisone is not working, just trying to see ifbthere maybe another explanation. The pain in my temples,jaws and back of head are worse than. Ever before.
Harrisonboy
in
PMRGCAuk
3 months ago
Switching from Abi to Enza?
Hi everyone, my father has been taking Abiraterone since 2.5 years now (along with prednisolone 5mg). It has nicely brought down his PSA from 500 to less than 1 and kept it steadily less than 1 since the past one year. He, of course, takes Lupron alongside. However, Abiraterone has resulted in some side
Hi everyone, my father has been taking Abiraterone since 2.5 years now (along with prednisolone 5mg). It has nicely brought down his PSA from 500 to less than 1 and kept it steadily less than 1 since the past one year. He, of course, takes Lupron alongside. However, Abiraterone has resulted in some side
Rodeoz15
in
Advanced Prostate Cancer
8 months ago
Update on severe skin lesions
Hi everyone. Just wanted to give an update with regard to the severe skin rash/lesions I experienced in November My GP diagnosed it as urticarial vasculitis but my rheumatologist thought it might be an adverse drug reaction (belated) to actemra. She stopped the infusions and had me on an increased dose
Hi everyone. Just wanted to give an update with regard to the severe skin rash/lesions I experienced in November My GP diagnosed it as urticarial vasculitis but my rheumatologist thought it might be an adverse drug reaction (belated) to actemra. She stopped the infusions and had me on an increased dose
Charkha
in
PMRGCAuk
3 months ago
After a remission recovery from PMR, do you stop seeing the rheumatologist?
And how would you know when you no longer need that doctor? As of today, I am feeling great, have no PMR and am on zero prednisone, but I do take some Methotrexate and Hydroxychloroquine. I plan to keep steadily reducing. The doctor said I can keep taking it, or cut steadily back, or even cold turkey
And how would you know when you no longer need that doctor? As of today, I am feeling great, have no PMR and am on zero prednisone, but I do take some Methotrexate and Hydroxychloroquine. I plan to keep steadily reducing. The doctor said I can keep taking it, or cut steadily back, or even cold turkey
sdowney717
in
PMRGCAuk
3 months ago
How I reinvented my life after GCA.
I had already retired as a Flight Attendant from a large commercial airline. I then went on to a part time job which I absolutely loved. I always said I was never going to stop working. I was healthy and could literally run rings around the younger employees. Life was good and I was so happy. 4 months
I had already retired as a Flight Attendant from a large commercial airline. I then went on to a part time job which I absolutely loved. I always said I was never going to stop working. I was healthy and could literally run rings around the younger employees. Life was good and I was so happy. 4 months
nallufl24
in
PMRGCAuk
3 months ago
speedway67
my cough started back in November 2022, hospitalised on prednisone and oxygen. Then three different buffers and never had asthma in my life. Now on Fasenra injections . Had three does and my feet are swollen every day and wake up with them . My joints are very painfully as well . Just reaching out to
my cough started back in November 2022, hospitalised on prednisone and oxygen. Then three different buffers and never had asthma in my life. Now on Fasenra injections . Had three does and my feet are swollen every day and wake up with them . My joints are very painfully as well . Just reaching out to
Speedway67
in
Asthma Community Forum
4 months ago
It doesn’t rain ..,
That’s what DL said in response to my last post about my recently discovered breast lump that was harmless other than 40 year old calcifications need to been scanned, gout that is in remission and intermittent voice loss I am sure is GERD and have an appointment to see the ENT man. No problems there
That’s what DL said in response to my last post about my recently discovered breast lump that was harmless other than 40 year old calcifications need to been scanned, gout that is in remission and intermittent voice loss I am sure is GERD and have an appointment to see the ENT man. No problems there
EdithWales
in
PMRGCAuk
8 months ago
Is there any order to when new medications or PARP inhibitor are tried?
My medical oncologist is hell bent on me doing Lu 177 pluvicto next, I was hoping to try other things first… Medical Oncologist suggested waiting for the next two months to see if PSA is still rising…and to do a pet scan Diagnosed 06/2022 Gleason 8/9 Oligo metastatic 3 lytic lesions two resolved
My medical oncologist is hell bent on me doing Lu 177 pluvicto next, I was hoping to try other things first… Medical Oncologist suggested waiting for the next two months to see if PSA is still rising…and to do a pet scan Diagnosed 06/2022 Gleason 8/9 Oligo metastatic 3 lytic lesions two resolved
Shorehousejam
in
Fight Prostate Cancer
4 months ago
Question, each month with rising PSA, when do I do a pet scan
Medical Oncologist suggested waiting for the next two months to see if it’s still rising… Diagnosed 06/2022 Gleason 8/9 Oligo metastatic 3 lytic lesions two resolved Started Firmagon 7/6/2022 Zytiga with Prednisone 7/20/2022 currently still on these meds Docetaxel Chemotherapy on 08/11/2022
Medical Oncologist suggested waiting for the next two months to see if it’s still rising… Diagnosed 06/2022 Gleason 8/9 Oligo metastatic 3 lytic lesions two resolved Started Firmagon 7/6/2022 Zytiga with Prednisone 7/20/2022 currently still on these meds Docetaxel Chemotherapy on 08/11/2022
Shorehousejam
in
Advanced Prostate Cancer
4 months ago
How I reinvented myself after PMR diagnosis
This is in response to PMRpro 's request to describe how we changed our lives after diagnosis. I was originally diagnosed at age 61 with PMR in November 2016 after already dealing with it for about 6 months. I work at a wholesale supply house for excavating contractors, supplying pipe for sewer,
This is in response to PMRpro 's request to describe how we changed our lives after diagnosis. I was originally diagnosed at age 61 with PMR in November 2016 after already dealing with it for about 6 months. I work at a wholesale supply house for excavating contractors, supplying pipe for sewer,
Raven1955
in
PMRGCAuk
4 months ago
Kaiser Xtandi follow up post.
Just fyi for the guys that asked, ……. I saw my new oncologist today and I’m Very impressed with her. Sharp as a tack , very well informed and bright, a sweetheart as others have said. she is new and already held in high esteem by her peers. I feel lucky to have her as my next oncologist.
Just fyi for the guys that asked, ……. I saw my new oncologist today and I’m Very impressed with her. Sharp as a tack , very well informed and bright, a sweetheart as others have said. she is new and already held in high esteem by her peers. I feel lucky to have her as my next oncologist.
Kaliber
in
Advanced Prostate Cancer
4 months ago
Recovery and relapse
Hello everyone, I am new to this community and feeling rather overwhelmed and emotional at what I suspect is the return of my PMR symptoms which I thought had 'gone away' after being diagnosed mid 2020 commenced on 15mg and a very very gradual taper from 5mg reducing 1mg a month in March 2021. I was
Hello everyone, I am new to this community and feeling rather overwhelmed and emotional at what I suspect is the return of my PMR symptoms which I thought had 'gone away' after being diagnosed mid 2020 commenced on 15mg and a very very gradual taper from 5mg reducing 1mg a month in March 2021. I was
Kaynot
in
PMRGCAuk
4 months ago
MART (maintenance as reliever therapy)
Hi, I’m just wondering if MART should work for most people? We’ve tried it recently (I say we because me and my GP have a good relationship and typically we work together on things like a team) and it didn’t help much. However I’m currently in the middle of a flare up (thank you cold weather + chest
Hi, I’m just wondering if MART should work for most people? We’ve tried it recently (I say we because me and my GP have a good relationship and typically we work together on things like a team) and it didn’t help much. However I’m currently in the middle of a flare up (thank you cold weather + chest
Tink1313
in
Asthma Community Forum
4 months ago
shingles vax
I’ve tapered down to 5mg of prednisone over the last 8 months and so far my PMR is at acceptably low levels. I’ve been offered the shingles vaccine and wondering whether to have it. What is your advice?
I’ve tapered down to 5mg of prednisone over the last 8 months and so far my PMR is at acceptably low levels. I’ve been offered the shingles vaccine and wondering whether to have it. What is your advice?
Knarllyknees
in
PMRGCAuk
4 months ago
Korsuva
My husband on dialysis is still suffering from rash and severe itching for months. He has tried every creme, prednisone in high doses, oatmeal baths, etc...Nothing helps except ice packs for a short time.I read that the FDA approved the drug Korsuva for treatment of CKD-aP but I can't find with research
My husband on dialysis is still suffering from rash and severe itching for months. He has tried every creme, prednisone in high doses, oatmeal baths, etc...Nothing helps except ice packs for a short time.I read that the FDA approved the drug Korsuva for treatment of CKD-aP but I can't find with research
Trower
in
Kidney Disease
4 months ago
I'm in trouble
Sorry to post again, but I am in a very bad way. I am on the 40mg dose of prednisone, and the headaches are getting worse. The pain in my jaws is so bad, I can barely stand it. Is it common to get worse after starting prednisone? I took 60mg for three days, now down to 40mg for three, then 20mg for
Sorry to post again, but I am in a very bad way. I am on the 40mg dose of prednisone, and the headaches are getting worse. The pain in my jaws is so bad, I can barely stand it. Is it common to get worse after starting prednisone? I took 60mg for three days, now down to 40mg for three, then 20mg for
Harrisonboy
in
PMRGCAuk
4 months ago
Full circle with this disease
Diagnosed 2017 PSA 105 started ADT, 6 rounds Docetaxel and radiation PSA drops to undetectable. Castrate resistant 2022 started Abiraterone and prednisone this failed after 3 months. Start Xgeva and Xofigo 2023. PSA back at 105 November 2023. Start 10 rounds of Docetaxel and PSA starts dropping again
Diagnosed 2017 PSA 105 started ADT, 6 rounds Docetaxel and radiation PSA drops to undetectable. Castrate resistant 2022 started Abiraterone and prednisone this failed after 3 months. Start Xgeva and Xofigo 2023. PSA back at 105 November 2023. Start 10 rounds of Docetaxel and PSA starts dropping again
Islandboy2021
in
Advanced Prostate Cancer
4 months ago
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