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Tired weak hips when walking - is it still Pmr
Hi, I'm feeling despondent as it seems that I can walk less and less and I don't know what's wrong.I've been on 1mg, trying to get off for over a year. I have no pain except when I do sustained walking. It kicks in after about 3 minutes. Tired, aching hips and lower back and I have to stop. I've got
Hi, I'm feeling despondent as it seems that I can walk less and less and I don't know what's wrong.I've been on 1mg, trying to get off for over a year. I have no pain except when I do sustained walking. It kicks in after about 3 minutes. Tired, aching hips and lower back and I have to stop. I've got
Blossom20
in
PMRGCAuk
5 months ago
Diabetic and Eye Damage
I have been insulin dependant diabetic for 40 years, which has been the cause of my eye conditions. I was one of the first patients my consultant gave eye injection, I've had three steroid implants, lots of Lazer and eye injections. Last year I had a sever bleed at the back of the eye resulting in
I have been insulin dependant diabetic for 40 years, which has been the cause of my eye conditions. I was one of the first patients my consultant gave eye injection, I've had three steroid implants, lots of Lazer and eye injections. Last year I had a sever bleed at the back of the eye resulting in
123charl
in
Macular Society
5 months ago
Headaches!
Hi everyone.....I'm started my PMR journey middle of January so have only been on Prednisolone for 6 weeks... I started on 20mg and now on 10mg I did up dosage for 2 weeks so was taking 12mg because I felt poorly... But my question is I've had a headache almost constantly for weeks....is it the press
Hi everyone.....I'm started my PMR journey middle of January so have only been on Prednisolone for 6 weeks... I started on 20mg and now on 10mg I did up dosage for 2 weeks so was taking 12mg because I felt poorly... But my question is I've had a headache almost constantly for weeks....is it the press
Tescohednesford
in
PMRGCAuk
5 months ago
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Slight PSA rise and MO discontinuing ADT due to fatigue
Father, 86, Stage 4A prostate cancer has been treated under STAMPEDE Protocol since November 2022 including prostate + whole pelvic radiation completed March 2023 (history in bio). Had appointment with MO today - initial plan was for this to be last shot of Lupron while Zytiga would be continued for
Father, 86, Stage 4A prostate cancer has been treated under STAMPEDE Protocol since November 2022 including prostate + whole pelvic radiation completed March 2023 (history in bio). Had appointment with MO today - initial plan was for this to be last shot of Lupron while Zytiga would be continued for
Superbfloor
in
Advanced Prostate Cancer
1 month ago
looking for input - RIsing PSA with Negative PSMA Pet scan
diagnosed in 2020 with Oligometastatic prostate cancer (1 spot detected on right ischium (hip)). Had prostate removed via surgery, did 39 radiation treatments to hip and prostate bed and took Lupron and Erleada . Stopped the hormone therapy in July 2022 (psa undetectable for 2 yrs). My psa in 2024
diagnosed in 2020 with Oligometastatic prostate cancer (1 spot detected on right ischium (hip)). Had prostate removed via surgery, did 39 radiation treatments to hip and prostate bed and took Lupron and Erleada . Stopped the hormone therapy in July 2022 (psa undetectable for 2 yrs). My psa in 2024
ND1988
in
Advanced Prostate Cancer
1 month ago
LVV Relapse Update
Good news … after 2 weeks at 25mgs pred, my markers are back to “normal”, ie CRP at 2 and ESR is 8. I have had two TCZ jabs a week apart, so could this have already created the masking effect, which had waned with the 4 weekly jabs? Now to begin the taper: 20mgs for 2 weeks and then 17.5 x 2 etc.
Good news … after 2 weeks at 25mgs pred, my markers are back to “normal”, ie CRP at 2 and ESR is 8. I have had two TCZ jabs a week apart, so could this have already created the masking effect, which had waned with the 4 weekly jabs? Now to begin the taper: 20mgs for 2 weeks and then 17.5 x 2 etc.
LemonZest11
in
PMRGCAuk
1 month ago
Lupus diagnosis after taking hydroxychloriquine for 14 months
Hi guys, hope everyone is well. Since getting diagnosed with lupus last month one thing has been really bothering me... As bit of a back story I was diagnosed with RA a few years ago. Over the last 6-8 months I've been amassing a bunch of other symptoms which last month resulted in my RA diagnosed
Hi guys, hope everyone is well. Since getting diagnosed with lupus last month one thing has been really bothering me... As bit of a back story I was diagnosed with RA a few years ago. Over the last 6-8 months I've been amassing a bunch of other symptoms which last month resulted in my RA diagnosed
Diagnosis_Collector
in
LUPUS UK
6 months ago
Borderline/low cortisol child
Hello lovely people, I posted last week about my 9 year old daughter being diagnosed with autoimmune hypothyroidism. I received some great support from this community and wonder whether you could perhaps offer me some further wisdom please. It transpires that she also has a cortisol level that is just
Hello lovely people, I posted last week about my 9 year old daughter being diagnosed with autoimmune hypothyroidism. I received some great support from this community and wonder whether you could perhaps offer me some further wisdom please. It transpires that she also has a cortisol level that is just
figster
in
Thyroid UK
1 month ago
Blood Test for MS Activity Gets FDA Breakthrough Designation
The US Food and Drug Administration (FDA) has granted breakthrough device designation to the Elecsys Neurofilament Light Chain (NfL) test for multiple sclerosis (MS). November, 2023
Made by Roche, the test is intended to be used as an aid in detection of disease activity in adults aged 18
The US Food and Drug Administration (FDA) has granted breakthrough device designation to the Elecsys Neurofilament Light Chain (NfL) test for multiple sclerosis (MS). November, 2023
Made by Roche, the test is intended to be used as an aid in detection of disease activity in adults aged 18
BettysMom
in
My MSAA Community
6 months ago
Minor change in psa - reason to be concern?
Hi, My dad just got an update on his PSA #. 3 weeks ago his PSA was 0.37, our family went on vacation, and he just got back and had his blood work done again. All enzymes normal, but PSA ticked up slightly to 0.47. Is this concerning at all? I thought PSA was suppose to trend to undetectable levels
Hi, My dad just got an update on his PSA #. 3 weeks ago his PSA was 0.37, our family went on vacation, and he just got back and had his blood work done again. All enzymes normal, but PSA ticked up slightly to 0.47. Is this concerning at all? I thought PSA was suppose to trend to undetectable levels
Cafu6
in
Advanced Prostate Cancer
1 month ago
in remission and stable
I have AIH/PBC and Barrett’s oesophagus I have been in remission for about 18months , interested to hear how long anyone else has stayed in remission? I am still on 3mg budesonide, mycophenolate and urso and numerous other tablets, unfortunately I am getting a lot of IBS does anyone else suffer with
I have AIH/PBC and Barrett’s oesophagus I have been in remission for about 18months , interested to hear how long anyone else has stayed in remission? I am still on 3mg budesonide, mycophenolate and urso and numerous other tablets, unfortunately I am getting a lot of IBS does anyone else suffer with
Suecong
in
British Liver Trust
1 month ago
Finally found some relief for IC
Hi everyone, I’m 48 & was diagnosed with IC & Hunners ulcers after having a bladder lift in 2005 & having the mesh fall apart & get stuck in my pelvic floor wall. The mesh was of course toxic and did a number on my bladder as well. I tried EVERYTHING you could imagine & kept track of when pain would
Hi everyone, I’m 48 & was diagnosed with IC & Hunners ulcers after having a bladder lift in 2005 & having the mesh fall apart & get stuck in my pelvic floor wall. The mesh was of course toxic and did a number on my bladder as well. I tried EVERYTHING you could imagine & kept track of when pain would
Ali_rivers
in
Pelvic Pain Support Network
1 month ago
B12 deficiency and gastrointestinal (GI) upset
Many people with B12 deficiency mention gastrointestinal (GI) upset. I came across a brief article that discusses some aspects of this relationship. https://pubmed.ncbi.nlm.nih.gov/34454714/ The article introduction includes the following statement: "To date, clinical guidance for best practices related
Many people with B12 deficiency mention gastrointestinal (GI) upset. I came across a brief article that discusses some aspects of this relationship. https://pubmed.ncbi.nlm.nih.gov/34454714/ The article introduction includes the following statement: "To date, clinical guidance for best practices related
WiscGuy
in
Pernicious Anaemia Society
9 months ago
Subcutaneous combination therapy improves ‘good on’ time in Parkinson’s
Primary analyses from this phase 3 clinical trial of the investigational, subcutaneous infusion of levodopa/carbidopa (LD/CD) (ND0612) showed that treatment in doses of up to 720 mg/90 mg per day, supplemented with oral levodopa provided almost 2 additional hours per day of “Good On” time without troublesome
Primary analyses from this phase 3 clinical trial of the investigational, subcutaneous infusion of levodopa/carbidopa (LD/CD) (ND0612) showed that treatment in doses of up to 720 mg/90 mg per day, supplemented with oral levodopa provided almost 2 additional hours per day of “Good On” time without troublesome
Farooqji
in
Cure Parkinson's
1 month ago
Ultrasound result and am now panicking
Hi, I wonder if anyone could offer some words of wisdom, I had an ultrasound yesterday and the sonographer said I had some fat in my liver, nothing to worry about. A week for results to GP. Phone call today from receptionist for urgent bloods, in a week and appt with GP, in 2 weeks. Asked to speak to
Hi, I wonder if anyone could offer some words of wisdom, I had an ultrasound yesterday and the sonographer said I had some fat in my liver, nothing to worry about. A week for results to GP. Phone call today from receptionist for urgent bloods, in a week and appt with GP, in 2 weeks. Asked to speak to
Owlie
in
British Liver Trust
1 month ago
Low cortisol
rheumatologist referred me to endocrinologist as Cortisol levels low He booked me in for a synacthen test. Which I had 3 weeks ago. I havnt got an appointment with him till end of August. I contacted his secretary who spoke to him and he said that level was inadequate and to continue with 5 mg of
rheumatologist referred me to endocrinologist as Cortisol levels low He booked me in for a synacthen test. Which I had 3 weeks ago. I havnt got an appointment with him till end of August. I contacted his secretary who spoke to him and he said that level was inadequate and to continue with 5 mg of
Creamtea
in
PMRGCAuk
1 month ago
update
Update on my post “What should I do”, thank you for all your helpful replies. I had my COVID Jab and no after effects from that. I am seeing the Surgery Nurse to have my leg dressed twice a week.The haematoma is slow to heal due to the blood thinning medication but Hopefully it will heal soon. I heard
Update on my post “What should I do”, thank you for all your helpful replies. I had my COVID Jab and no after effects from that. I am seeing the Surgery Nurse to have my leg dressed twice a week.The haematoma is slow to heal due to the blood thinning medication but Hopefully it will heal soon. I heard
Macas
in
PMRGCAuk
1 month ago
Berberine and iron?
Hi, So glad to have found this wonderful forum! I am a 74 year female who recently started taking pregabalin for RLS. I just got back my ferritin level and it is 12. I will order some iron and would like to know how many mg is a good dose. Also, I started taking niacin 500mg daily for my cholesterol
Hi, So glad to have found this wonderful forum! I am a 74 year female who recently started taking pregabalin for RLS. I just got back my ferritin level and it is 12. I will order some iron and would like to know how many mg is a good dose. Also, I started taking niacin 500mg daily for my cholesterol
glorious-granny
in
Restless Legs Syndrome
5 months ago
electric toothbrush, and Trigeminal Neuralgia
hello everyone, does anyone use an electric toothbrush and they also have trigeminal neuralgia?, I stopped using my electric toothbrush in fear of the pressure causing/triggering the pain. Now I feel as though my teeth are not as clean.
hello everyone, does anyone use an electric toothbrush and they also have trigeminal neuralgia?, I stopped using my electric toothbrush in fear of the pressure causing/triggering the pain. Now I feel as though my teeth are not as clean.
MSbeGone
in
My MSAA Community
1 month ago
REMINDER! Harrogate Lupus Group - Coffee and Chat meeting - 2nd March 10.30am
REMINDER! Saturday 2nd March, the Harrogate Lupus Group will be meeting at 10.30am, at the Woodlands Methodist Church Hall, 71 Wetherby Road, Harrogate, HG2 7SG. We will be joined by Frances Pearson, who will be talking about her ideas on the Lupus Observatory. Everyone is welcome to join! If you
REMINDER! Saturday 2nd March, the Harrogate Lupus Group will be meeting at 10.30am, at the Woodlands Methodist Church Hall, 71 Wetherby Road, Harrogate, HG2 7SG. We will be joined by Frances Pearson, who will be talking about her ideas on the Lupus Observatory. Everyone is welcome to join! If you
michaellasmith
Administrator
in
LUPUS UK
6 months ago
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