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cutaneous lupus
She is under rheumatology and dermatology and after two years still not found medication /
immunosuppressants
that works and shes seen several different consultants. Does anyone else suffer with skin lesions on chest, legs, head , the sores on her head are so sore she can’t brush her hair.
She is under rheumatology and dermatology and after two years still not found medication /
immunosuppressants
that works and shes seen several different consultants. Does anyone else suffer with skin lesions on chest, legs, head , the sores on her head are so sore she can’t brush her hair.
Nellons
in
LUPUS UK
1 year ago
Lipase blood test .
I had both Covid and flu jabs yesterday I usually split them. Feeling grotty first time ever and have had 7 over time being immunosuppressed. Today I'm due a fasting Lipase test. Is it wise to have it or should I wait. Been looking at Dr Google and only information I can find for the UK is give it at
I had both Covid and flu jabs yesterday I usually split them. Feeling grotty first time ever and have had 7 over time being immunosuppressed. Today I'm due a fasting Lipase test. Is it wise to have it or should I wait. Been looking at Dr Google and only information I can find for the UK is give it at
Jackie1947
in
Chronic Pancreatitis Support
7 months ago
lower back, sacroiliac joint maybe? hips affected. can you help me wait?
hello! hopefully i can describe clearly and succinctly what is going on... not always easy for me. my lower back has rumbled at me since i was a young person with cute swayback to fierce sciatica working on an assembly line in my 20s to not moving enough while playing music hunched over a fiddle and
hello! hopefully i can describe clearly and succinctly what is going on... not always easy for me. my lower back has rumbled at me since i was a young person with cute swayback to fierce sciatica working on an assembly line in my 20s to not moving enough while playing music hunched over a fiddle and
hazmatrec
in
Pain Concern
7 months ago
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Uveitis treatment opinion please
So seems like I have 2 options now in terms of
immunosuppressants
. 1. Take 2 g of mycophenolate ( daily) Or 2. Move to biologicals Based on your individual experience, which one would you advise ?
So seems like I have 2 options now in terms of
immunosuppressants
. 1. Take 2 g of mycophenolate ( daily) Or 2. Move to biologicals Based on your individual experience, which one would you advise ?
Udupik
in
Vasculitis UK
1 year ago
CAR T-cell therapy IMPT-514 gets FDA fast track designation for lupus
Investigational treatment targets active, resistant lupus nephritis and SLE The U.S. Food and Drug Administration (FDA) has granted fast track designation to IMPT-514, a CAR T-cell therapy being developed by Immpact Bio for people with active, treatment-resistant lupus nephritis and systemic lupus
Investigational treatment targets active, resistant lupus nephritis and SLE The U.S. Food and Drug Administration (FDA) has granted fast track designation to IMPT-514, a CAR T-cell therapy being developed by Immpact Bio for people with active, treatment-resistant lupus nephritis and systemic lupus
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
8 months ago
Intensified Saphnelo dosing seen to benefit lupus nephritis patients
lupusnewstoday.com/news/intensified-dosing-of-saphnelo-seen-to-benefit-lupus-nephritis-patients/ October 16, 2023 Treatment with an intensified dosing regimen of Saphnelo (anifrolumab) led to greater improvements in kidney function compared with standard dosing or a placebo for people with active
lupusnewstoday.com/news/intensified-dosing-of-saphnelo-seen-to-benefit-lupus-nephritis-patients/ October 16, 2023 Treatment with an intensified dosing regimen of Saphnelo (anifrolumab) led to greater improvements in kidney function compared with standard dosing or a placebo for people with active
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
8 months ago
COVID vaccine - old stock in use in the UK
Apparently, in order to save money, the British government decided to use the old stock of COVID vaccines, and they were doing so until a week (or so) ago. Hence, more than 2.3 million older and immunosuppressed people received the vaccine that does not match the dominant strain (XBB ), including people
Apparently, in order to save money, the British government decided to use the old stock of COVID vaccines, and they were doing so until a week (or so) ago. Hence, more than 2.3 million older and immunosuppressed people received the vaccine that does not match the dominant strain (XBB ), including people
flamboyant_hawking
in
MPN Voice
8 months ago
Any Tips re recovery from Peritonitis, ruptured caecum, appendicitis
Hello all Was ambulanced in just over a week ago due to all the above suddenly becoming acute They resectioned my bowel, removing the ileocecal valve & appendix am 70 with several infant onset immune dysfunction & connective tissue disorder illnesses long-diagnosed & responding ok to nhs treatments
Hello all Was ambulanced in just over a week ago due to all the above suddenly becoming acute They resectioned my bowel, removing the ileocecal valve & appendix am 70 with several infant onset immune dysfunction & connective tissue disorder illnesses long-diagnosed & responding ok to nhs treatments
Barnclown
in
Crohn's and Colitis Support
8 months ago
low neutrophils on pegysys
my white cell count have been dropping over the last new months. Was on 45 ug every 10 days. Neutrophils now 1.2. Haematologist has advised changing to every 2 weeks. Says unless neutrophils below 1 not really immunosuppressed. Any views
my white cell count have been dropping over the last new months. Was on 45 ug every 10 days. Neutrophils now 1.2. Haematologist has advised changing to every 2 weeks. Says unless neutrophils below 1 not really immunosuppressed. Any views
Sprat19
in
MPN Voice
8 months ago
Greater use of Benlysta, Saphnelo seen in US, EU to treat lupus
Goal to reduce long-term glucocorticoids use to prevent side effects
In both the U.S. and Europe, clinicians want to limit treatment with glucocorticoids — steroid hormones whose long-term use for autoimmune diseases is tied to serious side effects — among people with moderate to severe lupus
Goal to reduce long-term glucocorticoids use to prevent side effects
In both the U.S. and Europe, clinicians want to limit treatment with glucocorticoids — steroid hormones whose long-term use for autoimmune diseases is tied to serious side effects — among people with moderate to severe lupus
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
8 months ago
Invited For Covid Jab
I had a text this morning urging me to book in for a covid booster much to my surpise. I'm not sure what my elibility is based on, I'm not over 65, not diabetic or immunosuppressed. No kidney or heart problems. Certainly not pregnant. I dont have a serious lung condition. I do have asthma and use
I had a text this morning urging me to book in for a covid booster much to my surpise. I'm not sure what my elibility is based on, I'm not over 65, not diabetic or immunosuppressed. No kidney or heart problems. Certainly not pregnant. I dont have a serious lung condition. I do have asthma and use
Sparklingsunshine
in
Thyroid UK
8 months ago
COVID-19 immune cell vaccine eases SLE symptoms in girl: Report
Therapy helped 13-year-old by increasing immune tolerance, researchers say
A personalized vaccine kit designed to prevent COVID-19 infection eased systemic lupus erythematosus (SLE) manifestations in an adolescent girl in Indonesia whose symptoms had not been well-controlled with immunosuppressive
Therapy helped 13-year-old by increasing immune tolerance, researchers say
A personalized vaccine kit designed to prevent COVID-19 infection eased systemic lupus erythematosus (SLE) manifestations in an adolescent girl in Indonesia whose symptoms had not been well-controlled with immunosuppressive
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
8 months ago
A very special interview with Dr Patrick Harrington regarding Covid vaccines and MPN patients
In this interview Dr Patrick Harrington, Consultant Haematologist, Guy’s & St Thomas’ Hospital, talks to Nona about Covid vaccines for MPN patients, he starts off by describing the research he carried out at the start of the Covid pandemic, with Covid being a new condition it was an area that needed
In this interview Dr Patrick Harrington, Consultant Haematologist, Guy’s & St Thomas’ Hospital, talks to Nona about Covid vaccines for MPN patients, he starts off by describing the research he carried out at the start of the Covid pandemic, with Covid being a new condition it was an area that needed
Mazcd
MPNVoice
in
MPN Voice
8 months ago
Medical breakthrough
Hi everyone just wanted to share this video about a possible breaththrough about an 8 year old girl. Who after a kidney transplant doesn't have to take an immunosuppressant drugs after reviewing a special type of kidney. https://youtu.be/OWbdArmDJOI?si=tD0l1yNFz20kav3I 🌹
Hi everyone just wanted to share this video about a possible breaththrough about an 8 year old girl. Who after a kidney transplant doesn't have to take an immunosuppressant drugs after reviewing a special type of kidney. https://youtu.be/OWbdArmDJOI?si=tD0l1yNFz20kav3I 🌹
bbeba103
in
Kidney Disease
8 months ago
immunosuppressant drugs
I’m having trouble understanding which type of insurance should cover the 20% for immunosuppressant drugs that Medicare does not cover post transplant. I have Medicare A&B supplemental medical insurance that states no prescription coverage. Also a D drug plan. My understanding was that the Medical
I’m having trouble understanding which type of insurance should cover the 20% for immunosuppressant drugs that Medicare does not cover post transplant. I have Medicare A&B supplemental medical insurance that states no prescription coverage. Also a D drug plan. My understanding was that the Medical
Okralove
in
Kidney Transplant
9 months ago
Antibody levels of immunosuppressed people following covid-19 vaccination - results of the MELODY study
A study measuring the antibody levels of immunosuppressed people (including those with lupus) after having covid-19 vaccination found that about 4 in 5 people with a weakened immune system had antibodies after having 3 or more vaccines. People who had more doses of vaccine were more likely to have antibodies
A study measuring the antibody levels of immunosuppressed people (including those with lupus) after having covid-19 vaccination found that about 4 in 5 people with a weakened immune system had antibodies after having 3 or more vaccines. People who had more doses of vaccine were more likely to have antibodies
Debbie_kinsey
Administrator
in
LUPUS UK
9 months ago
SULFASALAZINE & FOOD POISONING - Is Anyone Else Affected?
In the first 20 months of taking Sulfasalazine I had food poisoning 8 times from food where no other partakers had any problems - 4 times with vomiting and diarrhoea (I had 2 such cases in the previous 60 years). My GP put it down to the immunosuppressant effects of Sulfasalazine making me more susceptible
In the first 20 months of taking Sulfasalazine I had food poisoning 8 times from food where no other partakers had any problems - 4 times with vomiting and diarrhoea (I had 2 such cases in the previous 60 years). My GP put it down to the immunosuppressant effects of Sulfasalazine making me more susceptible
Jimminey
in
NRAS
9 months ago
Immunosuppressants and COVID vaccine
Which vaccine is best for the immunosuppressed and have a primary immunodeficiency? I can't find any information on Novavax for the immunosuppressed. Does anyone know if the adjuvant it has is okay for us to take? I have searched and searched and cant find anything about it. Thank you.
Which vaccine is best for the immunosuppressed and have a primary immunodeficiency? I can't find any information on Novavax for the immunosuppressed. Does anyone know if the adjuvant it has is okay for us to take? I have searched and searched and cant find anything about it. Thank you.
Rocknlily
in
Kidney Transplant
1 year ago
Anyone on biologics and suffering leg ulcers
The nurses and gps at my surgery, keep saying it’s fine to continue
immunosuppressants
, as long as I don’t have an infection. I have only had one infection that was recently and required 2 weeks of antibiotics.
The nurses and gps at my surgery, keep saying it’s fine to continue
immunosuppressants
, as long as I don’t have an infection. I have only had one infection that was recently and required 2 weeks of antibiotics.
Runrig01
in
NRAS
1 year ago
2 questions i asked chat open AI mostly beyond my understanding but might be of interest to some of you :)
Q1 Which drugs could be re purposed to stimulate autophagy? ChatGPT Autophagy is a natural cellular process through which the body cleans out damaged cells and regenerates new, healthy ones. It plays a crucial role in maintaining cellular health and has been implicated in various diseases including
Q1 Which drugs could be re purposed to stimulate autophagy? ChatGPT Autophagy is a natural cellular process through which the body cleans out damaged cells and regenerates new, healthy ones. It plays a crucial role in maintaining cellular health and has been implicated in various diseases including
JustJeff
in
Cure Parkinson's
9 months ago
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