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Experiences with
Medium chain acyl dehydrogenase deficiency
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Radium 223 offered
Hi everyone Husband diagnosed nearly 51/2 years ago. Stage 4 with mets to spine and hip (4 in total) none to organs etc. Had Chemo five years ago ,Zytiga +Pred for 2 1/2 years (now failing ) as PSA is up to 37. We are in UK as some of you know, and Clint has been offered Radium 223 for his bone mets
Hi everyone Husband diagnosed nearly 51/2 years ago. Stage 4 with mets to spine and hip (4 in total) none to organs etc. Had Chemo five years ago ,Zytiga +Pred for 2 1/2 years (now failing ) as PSA is up to 37. We are in UK as some of you know, and Clint has been offered Radium 223 for his bone mets
16starsky
in
Advanced Prostate Cancer
5 months ago
Post triple therapy options?
This past summer, I wrote because my husband's PSA numbers started doubling very quickly. (see quick recap below) By the time we got the PSMA PET scan a few weeks later, there were too many tumors in the bones to count. We jumped into triple therapy: Eligard, Nubeqa, and chemo. David's last chemo (6
This past summer, I wrote because my husband's PSA numbers started doubling very quickly. (see quick recap below) By the time we got the PSMA PET scan a few weeks later, there were too many tumors in the bones to count. We jumped into triple therapy: Eligard, Nubeqa, and chemo. David's last chemo (6
TK934
in
Advanced Prostate Cancer
5 months ago
Switch diet to Vegetarian - save your kidneys
Please kidney patients switch your diet to plant based. I did and it saved me from dialysis. Look up Dadvice on faecbok, Jen Hernandez a dietician who worked in Dialysis patients who now promotes a plant based diet (vegetarian). You can type in Jen Hernandez as a search. Another source has a program
Please kidney patients switch your diet to plant based. I did and it saved me from dialysis. Look up Dadvice on faecbok, Jen Hernandez a dietician who worked in Dialysis patients who now promotes a plant based diet (vegetarian). You can type in Jen Hernandez as a search. Another source has a program
geewhiz
in
Kidney Disease
9 months ago
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Valproate: new safety and educational materials to support regulatory measures in men and women under 55 years of age
I don't think there is any reason to expect many members to be taking any form of Valproate, but this is such an important issue, with such significant consequences, I've decided to post it anyway. Even if you are not taking it, someone you know might be. [i]
Valproate (Belvo, Convulex, Depakote,
I don't think there is any reason to expect many members to be taking any form of Valproate, but this is such an important issue, with such significant consequences, I've decided to post it anyway. Even if you are not taking it, someone you know might be. [i]
Valproate (Belvo, Convulex, Depakote,
helvella
Thyroid UK
in
Thyroid UK
5 months ago
Desperately need help pls
So since last writing my previous post my Son has been experiencing “cluster seizures” - whereby he goes into a trance like state, talks gibberish and he can’t remember events and has no memory of what has happened. He has had approximately 3 or 4 of these “events” between May and December. The December
So since last writing my previous post my Son has been experiencing “cluster seizures” - whereby he goes into a trance like state, talks gibberish and he can’t remember events and has no memory of what has happened. He has had approximately 3 or 4 of these “events” between May and December. The December
Lisamarsh
in
Headway
5 months ago
Low iron test results and a way forward please
I had some blood tests recently and am wanting advice on a way forward, please. My serum iron level and my transferrin saturation index are both below the minimum level on the reference ranges. My serum ferritin is only just above the minimum on the reference range. I am struggling with symptoms I remember
I had some blood tests recently and am wanting advice on a way forward, please. My serum iron level and my transferrin saturation index are both below the minimum level on the reference ranges. My serum ferritin is only just above the minimum on the reference range. I am struggling with symptoms I remember
yorkshiregirl4
in
Pernicious Anaemia Society
10 months ago
Pain killers and Hip replacement
Can someone help please. My hospital says it is VERY HIGH RISK me having a hip replacement, which means I have been having cortisol injections in both hips for 5 years. My hips are so so bad that the injections only last a few weeks rather than months. When I was diagnosed with JAK2 and mylioproliferative
Can someone help please. My hospital says it is VERY HIGH RISK me having a hip replacement, which means I have been having cortisol injections in both hips for 5 years. My hips are so so bad that the injections only last a few weeks rather than months. When I was diagnosed with JAK2 and mylioproliferative
Hildrethbird
in
MPN Voice
9 months ago
Dry eyes
Hi helpful warriors I am on 35 mg of pred for next 2 weeks, then tapering to 30. Does pred cause dry eyes? ( did have cataract removal surgery in June of 2023.) Since diagnosis of GCA in late July 2023 I have had very dry eyes. I am on Thealoz Duo drops (3% Trehalose, 0.15 Sodium Hyaluronate).
Hi helpful warriors I am on 35 mg of pred for next 2 weeks, then tapering to 30. Does pred cause dry eyes? ( did have cataract removal surgery in June of 2023.) Since diagnosis of GCA in late July 2023 I have had very dry eyes. I am on Thealoz Duo drops (3% Trehalose, 0.15 Sodium Hyaluronate).
Groda
in
PMRGCAuk
9 months ago
My 73 year old dads stage 4 mastitic prostate cancer
Hi all My dad was diagnoised 3 years ago stage 4 with bone cancer lesions. He is on hormorne injections, and was taking chemo tablets until 18 months ago, then had to have 10 rounds of chemo which ended in septmeber 2023, since then his lost weight and his struggling to walk etc due to his lower back
Hi all My dad was diagnoised 3 years ago stage 4 with bone cancer lesions. He is on hormorne injections, and was taking chemo tablets until 18 months ago, then had to have 10 rounds of chemo which ended in septmeber 2023, since then his lost weight and his struggling to walk etc due to his lower back
Hidden
in
Advanced Prostate Cancer
5 months ago
constipation help
hi,I have again started to suffer from constipation, I have been trying to find the best one because a lot of them contain a lot of sodium that draws calcium out of your bones, I have got to be careful with severe osteoporosis,
hi,I have again started to suffer from constipation, I have been trying to find the best one because a lot of them contain a lot of sodium that draws calcium out of your bones, I have got to be careful with severe osteoporosis,
Radars
in
Bone Health and Osteoporosis UK
9 months ago
Anyone know anything about ferritin and trans ferritin saturation levels?
OK so I got some results back re iron and B12 and would so appreciate some expert understanding from anyone of you. I believe I might have lowish ferritin. It's 39ug but my transferritin saturation is 52%, which is high. How do I increase my iron levels if I need to, with high transferritin saturation
OK so I got some results back re iron and B12 and would so appreciate some expert understanding from anyone of you. I believe I might have lowish ferritin. It's 39ug but my transferritin saturation is 52%, which is high. How do I increase my iron levels if I need to, with high transferritin saturation
Auntbessy
in
Thyroid UK
10 months ago
EU introduces valproate measures
The European Medicines Agency (EMA) has announced precautionary measures for prescribing valproate to men with epilepsy. The measures follow those made by UK regulatory body the Medicines and Healthcare products Regulatory Agency (MHRA). The European regulations are less strict than those made by the
The European Medicines Agency (EMA) has announced precautionary measures for prescribing valproate to men with epilepsy. The measures follow those made by UK regulatory body the Medicines and Healthcare products Regulatory Agency (MHRA). The European regulations are less strict than those made by the
EpilepsyAction1
Epilepsy Action
in
Epilepsy Action
6 months ago
Jardiance Approved for CKD
Article from Drugs.com FDA Clears Jardiance for Use in Chronic Kidney Disease (CKD) In September, the FDA cleared Jardiance (empagliflozin), from Boehringer Ingelheim and Eli Lilly, to reduce the risk of further worsening of kidney disease, end-stage kidney disease (ESKD), death due to cardiovascular
Article from Drugs.com FDA Clears Jardiance for Use in Chronic Kidney Disease (CKD) In September, the FDA cleared Jardiance (empagliflozin), from Boehringer Ingelheim and Eli Lilly, to reduce the risk of further worsening of kidney disease, end-stage kidney disease (ESKD), death due to cardiovascular
orangecity41
NKF Ambassador
in
Kidney Disease
9 months ago
My Efforts to Educate the Scientific Community
I have written an article about my RLS experience which I have been working to disseminate in the medical and research communities. The bulk of the article follows: The medical community is generally unaware of the benefit of a low oxalate diet for treatment of RLS. In 2015, after 5 years of closely
I have written an article about my RLS experience which I have been working to disseminate in the medical and research communities. The bulk of the article follows: The medical community is generally unaware of the benefit of a low oxalate diet for treatment of RLS. In 2015, after 5 years of closely
notnowdad
in
Restless Legs Syndrome
9 months ago
Help with iron results - follow up from 3 arrows nutra
Hi everyone, I did an iron panel and I’m quite amazed with my ferritin level. I have been lax with my iron supps since going to T3 only and thought I would definitely have ranked my previously low results. To my disbelief, my ferritin is the highest I’ve ever seen it! I was previously taking the 3 arrows
Hi everyone, I did an iron panel and I’m quite amazed with my ferritin level. I have been lax with my iron supps since going to T3 only and thought I would definitely have ranked my previously low results. To my disbelief, my ferritin is the highest I’ve ever seen it! I was previously taking the 3 arrows
Beau55
in
Thyroid UK
10 months ago
Iron Level for RLS
It is proven that we sufferers r[i]equire over 100 when it comes to Iron . I have had RLS for 21'years and have a vast knowledge base. Now I am on 250 mg Pregabalin combined with 7.5 mg Targin.[/i][i]Symptoms are all over the place and waking me up during the night. [/i] [i]My recent Iron blood test
It is proven that we sufferers r[i]equire over 100 when it comes to Iron . I have had RLS for 21'years and have a vast knowledge base. Now I am on 250 mg Pregabalin combined with 7.5 mg Targin.[/i][i]Symptoms are all over the place and waking me up during the night. [/i] [i]My recent Iron blood test
Katyparis
in
Restless Legs Syndrome
10 months ago
Anaemia anyone?
So the latest is diagnosed with anaemia. Add iron supplements to the steroid list !! Whatever next…. 🤪 Doc seems happy with everything else
So the latest is diagnosed with anaemia. Add iron supplements to the steroid list !! Whatever next…. 🤪 Doc seems happy with everything else
gillsky8
in
PMRGCAuk
10 months ago
My body did not get the memo.
I accept that a test had been done measuring the amount of Hydroxocobalamin and Cynocabalamin that can be measured in the urine at different times after the injection and that the numbers are likely repeatable. I do not know if any testing was done on a subject that was B12 deficient. I find it unlikely
I accept that a test had been done measuring the amount of Hydroxocobalamin and Cynocabalamin that can be measured in the urine at different times after the injection and that the numbers are likely repeatable. I do not know if any testing was done on a subject that was B12 deficient. I find it unlikely
WIZARD6787
in
Pernicious Anaemia Society
10 months ago
Mayo Clinic studies B12 def, are very interesting!!
Check these studies out! I printed a few copies for my medical practice Abstract Although cobalamin (vitamin B12) deficiency was described over a century ago, it is still difficult to establish the correct diagnosis and prescribe the right treatment. Symptoms related to vitamin B12 deficiency may
Check these studies out! I printed a few copies for my medical practice Abstract Although cobalamin (vitamin B12) deficiency was described over a century ago, it is still difficult to establish the correct diagnosis and prescribe the right treatment. Symptoms related to vitamin B12 deficiency may
brenanddave
in
Pernicious Anaemia Society
10 months ago
Sodium cromoglicate - GP won't supply any more
Good afternoon everyone and thank you in advance for any help anyone might be able to offer. I have MCAS and POTS (as well as autoimmune, ME/CFS, histamine intolerance and a raft of other conditions) and recently started on sodium cromoglicate. The outcome has been almost miraculous - the first medication
Good afternoon everyone and thank you in advance for any help anyone might be able to offer. I have MCAS and POTS (as well as autoimmune, ME/CFS, histamine intolerance and a raft of other conditions) and recently started on sodium cromoglicate. The outcome has been almost miraculous - the first medication
PurpleNel
in
The UK Mastocytosis Support Group
6 months ago
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