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New Diagnosis of PBC and Prescribed URSO
Hello Everyone, I recently was diagnosed with PBC and went to see a GI doctor who recommended I start taking URSO. My bloodwork shows an elevated alk phos level (over time), positive AMA, GGT, DSDNA and I also was recently diagnosed last year with an MPN (myeloproliferative neoplasm) called essential
Hello Everyone, I recently was diagnosed with PBC and went to see a GI doctor who recommended I start taking URSO. My bloodwork shows an elevated alk phos level (over time), positive AMA, GGT, DSDNA and I also was recently diagnosed last year with an MPN (myeloproliferative neoplasm) called essential
Toddyboo
in
PBC Foundation
3 months ago
Watching House
I am off on a long weekend (tomorrow I go back to work), and watching House on Netflix. Funny how they focus on positive ANA for lupus on this. Of course it is never lupus, but the irony is, when you don’t tests positive on ANA - it can’t be lupus. BUT, if people test positive for ANA, you are told
I am off on a long weekend (tomorrow I go back to work), and watching House on Netflix. Funny how they focus on positive ANA for lupus on this. Of course it is never lupus, but the irony is, when you don’t tests positive on ANA - it can’t be lupus. BUT, if people test positive for ANA, you are told
Willow7733
in
LUPUS UK
3 months ago
Positive ANA and Symptoms
Hi everyoneI first tested positive for ANA (high) back in 2014 think it was 1:1280 This was never really followed up & I didn't understand it as I was only young then, but in thr last 5 years I've been experiencing symptoms. I have had more blood tests just from a GP who said ANA aas positive and explained
Hi everyoneI first tested positive for ANA (high) back in 2014 think it was 1:1280 This was never really followed up & I didn't understand it as I was only young then, but in thr last 5 years I've been experiencing symptoms. I have had more blood tests just from a GP who said ANA aas positive and explained
JCM1992
in
LUPUS UK
3 months ago
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Terrys nails
hi there, I’m just wondering if anyone with PBC has experience with Terrys nails? I have it on 5 of my finger nails (2 on one hand and 3 on another). My liver bloods are normal just now except for GGT (112) and my last fibroscan was 5.7 with CAP score of 233. Both AMA and ANA positive but my hepatoligist
hi there, I’m just wondering if anyone with PBC has experience with Terrys nails? I have it on 5 of my finger nails (2 on one hand and 3 on another). My liver bloods are normal just now except for GGT (112) and my last fibroscan was 5.7 with CAP score of 233. Both AMA and ANA positive but my hepatoligist
FarahS
in
PBC Foundation
3 months ago
Pain Relief
Hi all Can “anyone” offer me some advice as I’m at the “end of my tether” with pain! I’ve had a Triple Bypass and Mitral Valve Repair. I’ve had a Shoulder Rotator Cuff Repair. I’ve had a Laminectomy for Severe Spinal Stenosis which unfortunately failed and is now worse than before the Surgery! I
Hi all Can “anyone” offer me some advice as I’m at the “end of my tether” with pain! I’ve had a Triple Bypass and Mitral Valve Repair. I’ve had a Shoulder Rotator Cuff Repair. I’ve had a Laminectomy for Severe Spinal Stenosis which unfortunately failed and is now worse than before the Surgery! I
Davewm
in
Pain Concern
6 months ago
Does this look like a malar rash? Would it be seen as one by a doctor, do you think?
I have had joint pain and tiredness for the last six years. This last year it has got significantly worse and although I am overweight, the pain is felt in my fingers and elbows sometimes. My heel and ankle are also badly affected. The fatigue is debilitating. I have also developed digestive issues
I have had joint pain and tiredness for the last six years. This last year it has got significantly worse and although I am overweight, the pain is felt in my fingers and elbows sometimes. My heel and ankle are also badly affected. The fatigue is debilitating. I have also developed digestive issues
Fluffymella
in
LUPUS UK
3 months ago
Pluvicto still working well
Am coming to my fifth injection and I see I neglected to post my results after #3 & #4 so they are here, too. So far: Aug 16: PSA
99.7
Aug 21: Pluvicto
#1
Sep 11: PSA
106
Sep 28: PSA
91.8
Oct 05: Pluvicto
#2
Oct 25: PSA
57.8
Nov
Am coming to my fifth injection and I see I neglected to post my results after #3 & #4 so they are here, too. So far: Aug 16: PSA
99.7
Aug 21: Pluvicto
#1
Sep 11: PSA
106
Sep 28: PSA
91.8
Oct 05: Pluvicto
#2
Oct 25: PSA
57.8
Nov
Miccoman
in
Advanced Prostate Cancer
3 months ago
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
3 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)
3 months ago
Spinal Cord Stimulation & PD
Interesting article. https://spectrum.ieee.org/parkinsons-disease
Interesting article. https://spectrum.ieee.org/parkinsons-disease
House2
in
Cure Parkinson's
6 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
4 months ago
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
4 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
4 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
4 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
4 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)
4 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
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
5 months ago
Alk phos on Xeloda
Moms just started her 3 cycle today of xeloda. So she’s been on it 6 weeks. Her T bili is normal her ast and alt are normal . But her Alk phos is up. Her doctor said they would continue to monitor it. Anyone else have this elevate on Xeloda ? Thanks so much!
Moms just started her 3 cycle today of xeloda. So she’s been on it 6 weeks. Her T bili is normal her ast and alt are normal . But her Alk phos is up. Her doctor said they would continue to monitor it. Anyone else have this elevate on Xeloda ? Thanks so much!
Flower1513
in
SHARE Metastatic Breast Cancer
5 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
6 months ago
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