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Private specialist recommendation?
I’m not sure if this is allowed? I’m looking for a private Lupus specialist in the Gloucestershire / Wales area. Is there anyone that can be recommended? Despite positive ANA & ANCA my gp says she won’t refer me because other tests were ok and I saw one a few years ago that diagnosed fibromyalgia. Most
I’m not sure if this is allowed? I’m looking for a private Lupus specialist in the Gloucestershire / Wales area. Is there anyone that can be recommended? Despite positive ANA & ANCA my gp says she won’t refer me because other tests were ok and I saw one a few years ago that diagnosed fibromyalgia. Most
Puckster01
in
LUPUS UK
4 months ago
Royal Free visit
Hi all, I just thought I would give a quick update. I attended the Royal Free Hospital last Thursday ,I was seen in the Scleroderma clinic by a member of the team. She asked questions and examined me, she then went and got a senior colleague,(not Prof Denton) unfortunately can’t remember their names
Hi all, I just thought I would give a quick update. I attended the Royal Free Hospital last Thursday ,I was seen in the Scleroderma clinic by a member of the team. She asked questions and examined me, she then went and got a senior colleague,(not Prof Denton) unfortunately can’t remember their names
Buttsy
in
Scleroderma & Raynaud's UK (SRUK)
4 months ago
Is this a lupus rash
Hey everyone.I'll try and keep this short. Ive been diagnosed with fibromyalgia, pernicious anemia, lots of back disc issues, an exploratory lap for endometriosis which came back clear, my thyroid labs are poor but in range so not medicated but I am positive for tpa antibodies. I have had a positive
Hey everyone.I'll try and keep this short. Ive been diagnosed with fibromyalgia, pernicious anemia, lots of back disc issues, an exploratory lap for endometriosis which came back clear, my thyroid labs are poor but in range so not medicated but I am positive for tpa antibodies. I have had a positive
Peppermints
in
LUPUS UK
5 months ago
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How long for ANA/ENA results?
I've had quite a few symptoms of what my GP suspects might be a CTD, spanning back about 10 years but lots more cropping up more recently. She's requested (I think) an ANA test and I understand from googling that if the ANA is positive it then gets sent for ENA testing as well? I'm not sure what the
I've had quite a few symptoms of what my GP suspects might be a CTD, spanning back about 10 years but lots more cropping up more recently. She's requested (I think) an ANA test and I understand from googling that if the ANA is positive it then gets sent for ENA testing as well? I'm not sure what the
Helzipop
in
LUPUS UK
5 months ago
Lupus diagnosis yesterday
Hello everyone, been a tricky few months. You all know what it's like.just wanted to update and i feel a bit overwhelmed. In 2020 was diagnosed with UCTD. Positive ANA. Take hydroxychloquine. Last year ENT diagnosed sjogrens, it was an urgent 2 week referral as my throat had been sore for months
Hello everyone, been a tricky few months. You all know what it's like.just wanted to update and i feel a bit overwhelmed. In 2020 was diagnosed with UCTD. Positive ANA. Take hydroxychloquine. Last year ENT diagnosed sjogrens, it was an urgent 2 week referral as my throat had been sore for months
BonnyB
in
LUPUS UK
5 months ago
My Last (IFN) Dose, my Fateful Decision One Year Ago
This is a long and not cheerful post, I understand if you don’t wish to wade fully or at all thru it. Sections are marked for easy reference. The thoughts are my opinions only. -- I wrote a few months ago on my botched flu vax anniversary. Today is the one year mark for my Last Dose of Besremi
This is a long and not cheerful post, I understand if you don’t wish to wade fully or at all thru it. Sections are marked for easy reference. The thoughts are my opinions only. -- I wrote a few months ago on my botched flu vax anniversary. Today is the one year mark for my Last Dose of Besremi
EPguy
in
MPN Voice
5 months ago
Weak positive
Hi there I had a weak positive ANA it said speckled and 1.80 My dr has said no other action needed. Do I have the beginning of lupus. I already have type 1 diabetes, hashimoto and vitiligo. Thanks for any advice
Hi there I had a weak positive ANA it said speckled and 1.80 My dr has said no other action needed. Do I have the beginning of lupus. I already have type 1 diabetes, hashimoto and vitiligo. Thanks for any advice
Demilouise
in
LUPUS UK
5 months ago
Implications of positive if ‘weak ANA test’?
I have dry-eye confirmed by Moorfield’s. I also have dry mouth and my dentist said she suspected I had Sjorgren’s. When tested I proved to have a ‘weak positive ANA test’. What, if anything does that mean?
I have dry-eye confirmed by Moorfield’s. I also have dry mouth and my dentist said she suspected I had Sjorgren’s. When tested I proved to have a ‘weak positive ANA test’. What, if anything does that mean?
Morganalefaye
in
Scleroderma & Raynaud's UK (SRUK)
5 months ago
Lupus questions
Good afternoon, My doctor has been helping me with some ongoing symptoms, and following a positive ANA test has now referred me to a rheumatologist, theorising I may have Lupus. Anti-nuclear factor level POSITIVE - Titre > 1:640 ANA PATTERN SPECKLED My symptoms are: - mild arthritis in my neck, back
Good afternoon, My doctor has been helping me with some ongoing symptoms, and following a positive ANA test has now referred me to a rheumatologist, theorising I may have Lupus. Anti-nuclear factor level POSITIVE - Titre > 1:640 ANA PATTERN SPECKLED My symptoms are: - mild arthritis in my neck, back
EllsBells591
in
LUPUS UK
5 months ago
Need your advice please
For the last 60 years I have been a vigilant weight watcher, daily exerciser and have watched my calorie intake. When I commenced treatment for my Essential Thrombocytosis in January 2021, my weight was 53.5kg. Three years later this has ballooned to 60.3kg, despite my efforts to control any
For the last 60 years I have been a vigilant weight watcher, daily exerciser and have watched my calorie intake. When I commenced treatment for my Essential Thrombocytosis in January 2021, my weight was 53.5kg. Three years later this has ballooned to 60.3kg, despite my efforts to control any
Goosebumps52
in
MPN Voice
4 months ago
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
6 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
7 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
6 months ago
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
6 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
8 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
9 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
9 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
9 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
8 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
9 months ago
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