Search
Search
About
Log in
Join
Experiences with
Alna
Posts
Communities
945 public posts
Filter results
road to diagnosis
Hi everyone, I don’t know where to start… it’s been a bit of a rollercoaster so far. It all started when I started getting redness and discolouration in both feet. My GP did a blood test and referred me to my rheumatologist for further assessment. My rheumatologist felt that my feet getting red was
Hi everyone, I don’t know where to start… it’s been a bit of a rollercoaster so far. It all started when I started getting redness and discolouration in both feet. My GP did a blood test and referred me to my rheumatologist for further assessment. My rheumatologist felt that my feet getting red was
RA_123
in
LUPUS UK
8 months ago
Thoughts and Help
Hello all! I am new here. I know this is a lupus / autoimmune group, but before joining I noticed some helpful posts for other conditions, so I am hoping I can find some advice here. I have been dealing with declining health for a few years now, but have not received any diagnoses. I do have a positive
Hello all! I am new here. I know this is a lupus / autoimmune group, but before joining I noticed some helpful posts for other conditions, so I am hoping I can find some advice here. I have been dealing with declining health for a few years now, but have not received any diagnoses. I do have a positive
Hidden
in
LUPUS UK
9 months ago
Individualized Dosing of Ropeginterferon Alfa-2b Ensures Optimal Response in Patients with Low-Risk Polycythemia Vera (PV)
Conclusions: High long-term response rates (80.4% at 24 months; 73.2% at 72 months) were achieved with ropeginterferon alfa-2b treatment in the low-risk PV population when the dose was optimized on an individual basis. No specific baseline characteristics among low-risk PV patients appear to be associated
Conclusions: High long-term response rates (80.4% at 24 months; 73.2% at 72 months) were achieved with ropeginterferon alfa-2b treatment in the low-risk PV population when the dose was optimized on an individual basis. No specific baseline characteristics among low-risk PV patients appear to be associated
Manouche
in
MPN Voice
8 months ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Peginterferon alfa-2a
Hola! I'm new to this group and newly diagnosed with essential thrombocythemia. The treatment prescribed is peginterferon alfa-2a. So far I have done one treatment and wow does it suck! I haven't seen anyone else talking about this course of treatment. Is anyone else doing this? I sure could use some
Hola! I'm new to this group and newly diagnosed with essential thrombocythemia. The treatment prescribed is peginterferon alfa-2a. So far I have done one treatment and wow does it suck! I haven't seen anyone else talking about this course of treatment. Is anyone else doing this? I sure could use some
LisaLoveTacos
in
MPN Voice
8 months ago
Do I have lupus?
Several years ago I was having a lot of joint pains in my legs and fevers. I was referred to haematology who then referred me on to infectious diseases. The consultant did blood tests and told me I had a positive ANA test and anti-Double stranded dna antibody test which was positive, he diagnosed me
Several years ago I was having a lot of joint pains in my legs and fevers. I was referred to haematology who then referred me on to infectious diseases. The consultant did blood tests and told me I had a positive ANA test and anti-Double stranded dna antibody test which was positive, he diagnosed me
Poppy-12345
in
LUPUS UK
10 months ago
GP insisting on using CRP & ESR as inflammatory markers...and managing to get a creatine kinase blood test ordered...legs are still an issue
Hello I was called in to my GP surgery yesterday, by one of the GPs, the letter indicating it was for a medication review. She's not one of the GPs I prefer to see, she can be a little vague etc. But we ended up going through my meds and she asked about steroids being on my repeat....I said that although
Hello I was called in to my GP surgery yesterday, by one of the GPs, the letter indicating it was for a medication review. She's not one of the GPs I prefer to see, she can be a little vague etc. But we ended up going through my meds and she asked about steroids being on my repeat....I said that although
Wendy39
in
LUPUS UK
11 months ago
Should I push for a test?
Update - I have realised that a few more results have come through. He ordered dsDNA but apparently the sample was lost or there wasn't enough? He ordered ENA Antibody test but the result says unknown? ANA Test - Anti-nuclear factor level POSITIVE - Titre > 1:640 ANA PATTERN SPECKLED In the presence
Update - I have realised that a few more results have come through. He ordered dsDNA but apparently the sample was lost or there wasn't enough? He ordered ENA Antibody test but the result says unknown? ANA Test - Anti-nuclear factor level POSITIVE - Titre > 1:640 ANA PATTERN SPECKLED In the presence
EllsBells591
in
Pernicious Anaemia Society
11 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
11 months ago
Peginterferon alfa 2a or Hydroxycarbamide for PV?
My consultant has said I need to start treatment for PV and has asked me to choose between them. I'd really welcome any recommendations. I am new to this site, apologies uf this has been asked before.
My consultant has said I need to start treatment for PV and has asked me to choose between them. I'd really welcome any recommendations. I am new to this site, apologies uf this has been asked before.
Lyndjs
in
MPN Voice
10 months ago
immune system
Hi Everyone Can anyone tell me what affect Pegasys has on the immune system. A few tears ago I had a positive ANA and Anti-Ro blood test, was seen by a Rheumatologist who said I had Sicca symptoms but not Sjogrens. Another recent blood test has shown the same, positive ANA and Anti Ro. Now I am having
Hi Everyone Can anyone tell me what affect Pegasys has on the immune system. A few tears ago I had a positive ANA and Anti-Ro blood test, was seen by a Rheumatologist who said I had Sicca symptoms but not Sjogrens. Another recent blood test has shown the same, positive ANA and Anti Ro. Now I am having
lindyloulou
in
MPN Voice
11 months ago
Newly diagnosed with PBC
Hi there! I just got my official diagnosis today and was started on Ursodiol. I have been feeling fatigued for about 13 years and no one could find a reason. In the last 3 years, my liver enzymes went up and I started getting even weirder symptoms. Neurological impairments, heart pain, muscle pain.
Hi there! I just got my official diagnosis today and was started on Ursodiol. I have been feeling fatigued for about 13 years and no one could find a reason. In the last 3 years, my liver enzymes went up and I started getting even weirder symptoms. Neurological impairments, heart pain, muscle pain.
Pawsandchoc
in
PBCers Organization
11 months ago
biopsy help ?
hi everyone , I’m new to posting here. I would be delighted for any advice . I have been reading many of the posts which have been more than helpful, especially when time in the consultant room can be short . I have ? Lupus , no diagnosis yet . Have what appears to be full time butterfly rash
hi everyone , I’m new to posting here. I would be delighted for any advice . I have been reading many of the posts which have been more than helpful, especially when time in the consultant room can be short . I have ? Lupus , no diagnosis yet . Have what appears to be full time butterfly rash
Milliesal
in
LUPUS UK
11 months ago
ANA testing
Hi. My doctor routinely checks my antibody levels and it’s always above normal so I have a high ANA test. I have Graves disease so my endo doesn’t think it’s unusual but recently my ANA went up. It comes out homogeneous speckled and is normally 1:160 and now 1:320 which I guess is the next level up.
Hi. My doctor routinely checks my antibody levels and it’s always above normal so I have a high ANA test. I have Graves disease so my endo doesn’t think it’s unusual but recently my ANA went up. It comes out homogeneous speckled and is normally 1:160 and now 1:320 which I guess is the next level up.
Beefull8
in
Thyroid UK
11 months ago
Possible early stages of lupus?
I started having joint pain a few months ago, mostly hands and feet, together with a little tingling in both. I also started to have hot flushes (not menopause-related; already diagnosed with premature menopause and taking oestrogen). The GP ordered a bunch of blood tests in April and decided that being
I started having joint pain a few months ago, mostly hands and feet, together with a little tingling in both. I also started to have hot flushes (not menopause-related; already diagnosed with premature menopause and taking oestrogen). The GP ordered a bunch of blood tests in April and decided that being
hose1975
in
LUPUS UK
1 year ago
PBC and skin hyperpigmentation
maybe someone can help me with this. I have positive ANA 1280. Positive AMA M2 120. Positive Anticentromere 160. These were discovered in 2014 when I started having symptoms which turned out to be Lupus. Since the M2 was positive I have been seeing a Liver specialist once a year with annual ultrasounds
maybe someone can help me with this. I have positive ANA 1280. Positive AMA M2 120. Positive Anticentromere 160. These were discovered in 2014 when I started having symptoms which turned out to be Lupus. Since the M2 was positive I have been seeing a Liver specialist once a year with annual ultrasounds
Lorelle09
in
PBC Foundation
1 year ago
always ANA positive with lupus?
hi all, I was diagnosed privately in 2019 with SLE and Sjogrens , but my current GP is querying this, its an ongoing issue and a long story. She has said that if my ANA comes back neg then I don't have lupus or sjorgrens, despite all mys symptoms and being on ongoing treatment for it? My questions
hi all, I was diagnosed privately in 2019 with SLE and Sjogrens , but my current GP is querying this, its an ongoing issue and a long story. She has said that if my ANA comes back neg then I don't have lupus or sjorgrens, despite all mys symptoms and being on ongoing treatment for it? My questions
Foodman500
in
LUPUS UK
1 year ago
Event-free survival in patients with polycythemia vera treated with Besremi versus best available treatment
»Normal life expectancy may be achievable in PV based on comparable overall survival in interferon-treated patients and a matched US population (p = 0.3), contrasting with shortened survival (p = 0.03) in non-interferon treated patients at the same academic center [3]. Although overall survival was
»Normal life expectancy may be achievable in PV based on comparable overall survival in interferon-treated patients and a matched US population (p = 0.3), contrasting with shortened survival (p = 0.03) in non-interferon treated patients at the same academic center [3]. Although overall survival was
Manouche
in
MPN Voice
1 year ago
My story so far.
So my story starts in 2014 I was referred to the rheumatology clinic for joint pain, mouth sores, I did display some inflammation in joints and was given cortisol injections. I had an ANA Factor of 1/1280 I was kept under the clinic for a number of years but as the condition didn't progress I was discharged
So my story starts in 2014 I was referred to the rheumatology clinic for joint pain, mouth sores, I did display some inflammation in joints and was given cortisol injections. I had an ANA Factor of 1/1280 I was kept under the clinic for a number of years but as the condition didn't progress I was discharged
JCM1992
in
LUPUS UK
1 year ago
Postive ANA?
Hi, I recently had a postive ANA result (1:160 speckled) alongside elevated CRP. Few years ago had tests that my GP said were indicative of lupus (abnormal urine sample, elevated serum creatine and elevated lupus anti coag) he said if I felt okay to just leave it there… Since 2020 I have felt gradually
Hi, I recently had a postive ANA result (1:160 speckled) alongside elevated CRP. Few years ago had tests that my GP said were indicative of lupus (abnormal urine sample, elevated serum creatine and elevated lupus anti coag) he said if I felt okay to just leave it there… Since 2020 I have felt gradually
GreenTealSeal
in
LUPUS UK
1 year ago
MS or Lupus
Hi All This is my first post and I appreciate that you may not have the answers just looking for guidance. I was diagnosed with Optic Neuritis in February and was put on short intensive steroids in March sleep deprivation the worst! but sight hasn’t fully and won’t fully return. Ophthalmology thought
Hi All This is my first post and I appreciate that you may not have the answers just looking for guidance. I was diagnosed with Optic Neuritis in February and was put on short intensive steroids in March sleep deprivation the worst! but sight hasn’t fully and won’t fully return. Ophthalmology thought
Gossygirl76
in
LUPUS UK
1 year ago
1
2
3
4
...
48
Next page
10
20
30
40
Filter results
Clear filters
Posted in
All communities
LUPUS UK
499 results
Thyroid UK
77 results
Scleroderma & Raynaud's UK (SRUK)
47 results
View top 10 communities
Sort by
Most Relevant
Newest