Search
Search
About
Log in
Join
Experiences with
Porphyria
Posts
Communities
34 public posts
Filter results
B12 Def + Porphyria possible connection!
[/i] Acute
porphyria
is a term that includes three similar genetically inherited diseases: acute intermittent
porphyria
, hereditary coproporphyria and variegate
porphyria
.
[/i] Acute
porphyria
is a term that includes three similar genetically inherited diseases: acute intermittent
porphyria
, hereditary coproporphyria and variegate
porphyria
.
GracePV
in
Pernicious Anaemia Society
4 months ago
I'm new and lost. Looking for tips
I have APS and AIP (
Porphyria
) and I'm on a good handful of meds for medical and mental health things. Has ANYONE heard of someone dancing with both of these beauty queens at once?? I just don't know how I keep getting all the good luck.
I have APS and AIP (
Porphyria
) and I'm on a good handful of meds for medical and mental health things. Has ANYONE heard of someone dancing with both of these beauty queens at once?? I just don't know how I keep getting all the good luck.
Jmkeefe
in
Hughes Syndrome APS Forum
6 days ago
In vivo & in vitro: CRISPR 9 new approach to attack PCa proof of concept
In people with a condition called
porphyria
, these porphyrins naturally build up because of a genetic issue and can cause problems when the skin is exposed to sunlight.
In people with a condition called
porphyria
, these porphyrins naturally build up because of a genetic issue and can cause problems when the skin is exposed to sunlight.
Maxone73
in
Advanced Prostate Cancer
4 months ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Scared
I have several health conditions like IBS w/constipation;COPD w/asthma;hereditary
porphyria
;mild MS;sickle cell trait;and fibromyalgia! Yea,before anyone comments I Am really f*** up! My worry is that now that I am old docs say I need to go on an osteoporosis medication!
I have several health conditions like IBS w/constipation;COPD w/asthma;hereditary
porphyria
;mild MS;sickle cell trait;and fibromyalgia! Yea,before anyone comments I Am really f*** up! My worry is that now that I am old docs say I need to go on an osteoporosis medication!
Kathie50
in
CHANGE
2 years ago
Doctors who know Hughes and its comorbidity
Hi Especially to Kelly in West Texas I am in NJ with APS and all those usual add ons like Lupus but -I also have Hemophilia B and
Porphyria
. I had Dr.Erkan confirm the APS And had to have 3 surgeries last year at HSS for a fracture. I recently read you traveled to London to meet Dr.
Hi Especially to Kelly in West Texas I am in NJ with APS and all those usual add ons like Lupus but -I also have Hemophilia B and
Porphyria
. I had Dr.Erkan confirm the APS And had to have 3 surgeries last year at HSS for a fracture. I recently read you traveled to London to meet Dr.
BeachHaven123
in
Hughes Syndrome APS Forum
3 years ago
Newly diagnosed bechets
Firstly they thought it was lupus, then
porphyria
, then a few others chucked in the mix - now Iβm finally down to bechets with a small possibility of periodic syndrome. Also, severe autoimmune dry eye.
Firstly they thought it was lupus, then
porphyria
, then a few others chucked in the mix - now Iβm finally down to bechets with a small possibility of periodic syndrome. Also, severe autoimmune dry eye.
BabyOleg
in
Partners for Behcet's
3 years ago
Possible explanation for lack of hepatic B12 storage
Here is the specific portion of the article that deals with the subject: "Throughout this lengthy investigation, I tried to interest various IC researchers in
porphyria
but not one IC researcher would bite. I finally realized the sad truth: I would have to do the work myself.
Here is the specific portion of the article that deals with the subject: "Throughout this lengthy investigation, I tried to interest various IC researchers in
porphyria
but not one IC researcher would bite. I finally realized the sad truth: I would have to do the work myself.
USmedsyssucks
in
Pernicious Anaemia Society
3 years ago
New Fatty Liver Here & A Brief(ish) History
When the levels came back at what they were, combined with some peculiar skin issues I was having (small, painless, clear fluid-filled bumps on my forearms and hands after being in the sun) she thought perhaps I have PCT, or
Porphyria
Cutanea Tarda and ordered a 24 hour urine collection test.
When the levels came back at what they were, combined with some peculiar skin issues I was having (small, painless, clear fluid-filled bumps on my forearms and hands after being in the sun) she thought perhaps I have PCT, or
Porphyria
Cutanea Tarda and ordered a 24 hour urine collection test.
TennCreekBridges
in
British Liver Trust
4 years ago
Neutropenia - on ADTs: Lupron 14 years + Apalutamide past 8 months
He also speculated the cause could be the
porphyria
(that killed my twin sister at age 36).
He also speculated the cause could be the
porphyria
(that killed my twin sister at age 36).
WaltN
in
Advanced Prostate Cancer
5 years ago
Multiple Medical Issues
Greetings everyone, I'm Nyx from Toronto Ontario Canada I'm 42 and living with multiple medical issues, I have acute intermittent
porphyria
, polycystic ovarian syndrome, dystonia (unknown type), spinal osteoarthritis, degenerative disk disease, (juvenile) arthritis, type 1 diabetes, chronic pain, and
Greetings everyone, I'm Nyx from Toronto Ontario Canada I'm 42 and living with multiple medical issues, I have acute intermittent
porphyria
, polycystic ovarian syndrome, dystonia (unknown type), spinal osteoarthritis, degenerative disk disease, (juvenile) arthritis, type 1 diabetes, chronic pain, and
Nyxks
in
Neuro Support
5 years ago
Crawling....π‘π‘π‘πππ
The itching cant be down to high bilirubin, it must be the
porphyria
π§ββοΈ. Dermol and antihistamines doing nothing, any suggestions at all? I will try anything! I'm currently considering the cheese grater....π’π€¬ xxx
The itching cant be down to high bilirubin, it must be the
porphyria
π§ββοΈ. Dermol and antihistamines doing nothing, any suggestions at all? I will try anything! I'm currently considering the cheese grater....π’π€¬ xxx
Porphyriamaniac
in
British Liver Trust
5 years ago
Tortured by a Butterfly -- Dermatology and extreme sun reactions
Then I spent until 2a.m. researching what they had wanted to diagnose me with last year -- which is Solar Urticaria -- because I'm desperate that they rule out the EPP (type of
porphyria
) before doing so.
Then I spent until 2a.m. researching what they had wanted to diagnose me with last year -- which is Solar Urticaria -- because I'm desperate that they rule out the EPP (type of
porphyria
) before doing so.
panda2
in
LUPUS UK
5 years ago
The happy end of a long road π
I think the
porphyria
may be in remission as my urine hasn't been red for a couple of months(just a beaut Lucozade colour instead π€£) and skin seems stronger and less fragile too, fingers crossed ππ€ Stacie, (blt's resident vampire) π§ββοΈ π. Xxxx
I think the
porphyria
may be in remission as my urine hasn't been red for a couple of months(just a beaut Lucozade colour instead π€£) and skin seems stronger and less fragile too, fingers crossed ππ€ Stacie, (blt's resident vampire) π§ββοΈ π. Xxxx
Porphyriamaniac
in
British Liver Trust
5 years ago
Vampires and werewolves and squirrels...Oh my! π§ββοΈπΊπΏ
Born to the Purple: the Story of
Porphyria
- Scientific American https://www.scientificamerican.com/article/born-to-the-purple-the-st/
Born to the Purple: the Story of
Porphyria
- Scientific American https://www.scientificamerican.com/article/born-to-the-purple-the-st/
Porphyriamaniac
in
British Liver Trust
6 years ago
Good and bad
Xxxx π π ππππ https://www.britishlivertrust.org.uk/liver-information/liver-conditions/
porphyria
/
Xxxx π π ππππ https://www.britishlivertrust.org.uk/liver-information/liver-conditions/
porphyria
/
Porphyriamaniac
in
British Liver Trust
6 years ago
Where I'm at, Dr evil.
Xxxx https://www.britishlivertrust.org.uk/liver-information/liver-conditions/
porphyria
/
Xxxx https://www.britishlivertrust.org.uk/liver-information/liver-conditions/
porphyria
/
Porphyriamaniac
in
British Liver Trust
6 years ago
Things are moving! π(porphyria)
Below is a link to blt's
porphyria
page for anyone interested who hasn't seen it, always good to raise awareness! π take care everyone. Xxx https://www.britishlivertrust.org.uk/liver-information/liver-conditions/
porphyria
/
Below is a link to blt's
porphyria
page for anyone interested who hasn't seen it, always good to raise awareness! π take care everyone. Xxx https://www.britishlivertrust.org.uk/liver-information/liver-conditions/
porphyria
/
Porphyriamaniac
in
British Liver Trust
6 years ago
Bloody porphyria...
I don't know where else to post as I can't seem to find any
porphyria
forums or anyone to talk to with the same thing, I've been in touch with the British
porphyria
foundation but no reply as yet.
I don't know where else to post as I can't seem to find any
porphyria
forums or anyone to talk to with the same thing, I've been in touch with the British
porphyria
foundation but no reply as yet.
Porphyriamaniac
in
British Liver Trust
6 years ago
Picked up Hervoni.
Here we go,I start in the morning,do my best to post for others,first person in 22 years to present with
Porphyria
on top of chronic??? Hep C. Viral load 2040.850.
Here we go,I start in the morning,do my best to post for others,first person in 22 years to present with
Porphyria
on top of chronic??? Hep C. Viral load 2040.850.
Phillipaussie
in
Mental Health Support
6 years ago
Hervoni,
I got a call from my hep nurse,I was waiting till Friday 4th,pending latest
Porphyria
results...looks good being called in a day sooner, I am number 501 to have this new treatment, fibroscan was 7.4 and I have a slightly fatty liver in the low reading. Was told type 1a with viral load 2 million.
I got a call from my hep nurse,I was waiting till Friday 4th,pending latest
Porphyria
results...looks good being called in a day sooner, I am number 501 to have this new treatment, fibroscan was 7.4 and I have a slightly fatty liver in the low reading. Was told type 1a with viral load 2 million.
Phillipaussie
in
HFI Connect - Hepatitis
6 years ago
1
2
Next page
Filter results
Clear filters
Posted in
All communities
British Liver Trust
11 results
Hughes Syndrome APS Forum
3 results
LUPUS UK
3 results
View top 10 communities
Sort by
Most Relevant
Newest