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Gaucher disease type 3 (GD3)
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Hello ššæ
Hi everyone! My name is Taress (rhymes with caress). I was diagnosed with Multiple Sclerosis 6 months ago. It's been a long time coming. I have had symptoms of it, on and off, since 2005. I am one of three of my family members whose been diagnosed with it. My main symptoms are fatigue, dizziness, neuropathy
Hi everyone! My name is Taress (rhymes with caress). I was diagnosed with Multiple Sclerosis 6 months ago. It's been a long time coming. I have had symptoms of it, on and off, since 2005. I am one of three of my family members whose been diagnosed with it. My main symptoms are fatigue, dizziness, neuropathy
RessieBare02
in
My MSAA Community
2 days ago
No thyroid
Hi, all the posts are about thyroid problems and taking levo for underactive thyroid, I'm taking levo 50mg and 75mg on alternate days. Can anyone tell me if taking tiromel or the unipharma tablets would be any use fo r someone who has had a total thyroidectomy. At the moment I feel as though I'm sleeping
Hi, all the posts are about thyroid problems and taking levo for underactive thyroid, I'm taking levo 50mg and 75mg on alternate days. Can anyone tell me if taking tiromel or the unipharma tablets would be any use fo r someone who has had a total thyroidectomy. At the moment I feel as though I'm sleeping
Sleepyasf--k
in
Thyroid UK
2 days ago
Medication not working
Iāve had rheumatoid arthritis for nearly 20years. Iāve tried, methotrexate, Arava, adalimimab, entanercept, ruituxan, filgotinib, baracitinib and a few others that arenāt biologics. The problem is, they donāt work for me. Has anyone else had this issue and if so what are you taking now. Iām at my wits
Iāve had rheumatoid arthritis for nearly 20years. Iāve tried, methotrexate, Arava, adalimimab, entanercept, ruituxan, filgotinib, baracitinib and a few others that arenāt biologics. The problem is, they donāt work for me. Has anyone else had this issue and if so what are you taking now. Iām at my wits
Lornap1
in
NRAS
3 days ago
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biologics
hi all! I have rheumatoid arthritis Iām currently injecting 15 mg of Metratrexate but just had all my screening including TB all come back clear so now I have the green light to start Himera but Iām really nervous of this medication!š¤¦š½āāļøIām staying on the metratrexate but adding in the biologic as
hi all! I have rheumatoid arthritis Iām currently injecting 15 mg of Metratrexate but just had all my screening including TB all come back clear so now I have the green light to start Himera but Iām really nervous of this medication!š¤¦š½āāļøIām staying on the metratrexate but adding in the biologic as
Mybirthday1975
in
NRAS
3 days ago
Heat does it cause problems
Hi allBoth ankles and knees swollen does this often happen with underactive thyroid I am on 75 to 100mg daily which I alternate as recommended by you lovely lot which has helped me become stable and feel better for last year I do have inflammatory arthritis also and am on DMARS for Any advise tips will
Hi allBoth ankles and knees swollen does this often happen with underactive thyroid I am on 75 to 100mg daily which I alternate as recommended by you lovely lot which has helped me become stable and feel better for last year I do have inflammatory arthritis also and am on DMARS for Any advise tips will
Castroll
in
Thyroid UK
3 days ago
so. Is Undifferentiated Connective Tissue Disease latent lupus or lupus?
diagnosed with UCTD in October 2023. Fatigue, weird blood results which sent down rabbit hole for heart, liver. Scans showed all okayā¦ fatigue, dry eyes, dry mouth, ulcers on parotid glands, thyroid, testes, mouth ulcers, Yesterday taken into hospital for suspected brain bleed, aneurism. One protein
diagnosed with UCTD in October 2023. Fatigue, weird blood results which sent down rabbit hole for heart, liver. Scans showed all okayā¦ fatigue, dry eyes, dry mouth, ulcers on parotid glands, thyroid, testes, mouth ulcers, Yesterday taken into hospital for suspected brain bleed, aneurism. One protein
Bigdave79
in
LUPUS UK
3 days ago
Results from blood tests
These is what my blood results came back has. I'm been treated for underactive . But to be told I'm hyperthyroidism instead
These is what my blood results came back has. I'm been treated for underactive . But to be told I'm hyperthyroidism instead
Salsybar73
in
Thyroid UK
4 days ago
Disease remission achieved in SLE with dual-target CAR T-cell therapy
Disease remission achieved in SLE with dual-target CAR T-cell therapy Nearly all patients in small trial see long-term medication-free remission Nearly all people with systemic lupus erythematosus (SLE) treated with iCell Gene Therapeuticsā dual-target CAR T-cell therapy achieved medication-free
Disease remission achieved in SLE with dual-target CAR T-cell therapy Nearly all patients in small trial see long-term medication-free remission Nearly all people with systemic lupus erythematosus (SLE) treated with iCell Gene Therapeuticsā dual-target CAR T-cell therapy achieved medication-free
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
4 days ago
Feeling rubbish
Hi been feeling achy, exhausted,can sleep 12 hrs but wake up groggy & tired. Everything hurts. Have plantar fasciatis. Patella deformity in knee, spondylitis in my back giving me sciatica. Herniated discs both sides of neck. Causing numbess & pain. Chronic pain syndrome. Cfs/fybro/me. Arthritis in some
Hi been feeling achy, exhausted,can sleep 12 hrs but wake up groggy & tired. Everything hurts. Have plantar fasciatis. Patella deformity in knee, spondylitis in my back giving me sciatica. Herniated discs both sides of neck. Causing numbess & pain. Chronic pain syndrome. Cfs/fybro/me. Arthritis in some
bellemia
in
Thyroid UK
4 days ago
NRAS Live: How Important is Nutrition & Diet when Managing Rheumatoid Arthritis?
Join us for our next NRAS Live which will be taking place on Wednesday 26th June at 7pm. This month, we delve into the important role of nutrition and diet when managing a healthy lifestyle living with rheumatoid arthritis. Ailsa will be sitting down with Elena Nikiphorou, Rheumatologist Consultant and
Join us for our next NRAS Live which will be taking place on Wednesday 26th June at 7pm. This month, we delve into the important role of nutrition and diet when managing a healthy lifestyle living with rheumatoid arthritis. Ailsa will be sitting down with Elena Nikiphorou, Rheumatologist Consultant and
Aribah-NRAS
NRAS
in
NRAS
4 days ago
thank you for the help! ā¤ļø
I recently posted asking if anyone had pancreatitis issues with lupus (just been diagnosed with cutaneous lupus) and I got some advise & help & support. I spoke to the hepatobillary clinic who removed my gallbladder & they agree itās most likely the pancreatitis is being caused by an autoimmune issue
I recently posted asking if anyone had pancreatitis issues with lupus (just been diagnosed with cutaneous lupus) and I got some advise & help & support. I spoke to the hepatobillary clinic who removed my gallbladder & they agree itās most likely the pancreatitis is being caused by an autoimmune issue
Loobie72
in
LUPUS UK
4 days ago
Strange definition of pernicious anemia
Found this questionable definition of pernicious anemia on a Johns Hopkins web page about gastritis: [i]
Pernicious anemia
. This is a form of anemia that happens when your stomach can't digest vitamin B-12.[/i] Even the best seem to get it wrong. https://www.hopkinsmedicine.org/health/conditions-and-diseases
Found this questionable definition of pernicious anemia on a Johns Hopkins web page about gastritis: [i]
Pernicious anemia
. This is a form of anemia that happens when your stomach can't digest vitamin B-12.[/i] Even the best seem to get it wrong. https://www.hopkinsmedicine.org/health/conditions-and-diseases
palmier
in
Pernicious Anaemia Society
4 days ago
Maybe because of "careful" patient selection, but still great: PSA Undetectable in First Patient Cu-67 SAR-bisPSMA
Positive results for mCRPC, very positive. Sorry if I have already posted this (my mind is not so sharp lately...was it ever??). "The first patient with prostate cancer dosed with 2 cycles of 8GBq of 67Cu-SAR-bisPSMA has reached undetectable prostate specific antigen (PSA) levels using PET" https:/
Positive results for mCRPC, very positive. Sorry if I have already posted this (my mind is not so sharp lately...was it ever??). "The first patient with prostate cancer dosed with 2 cycles of 8GBq of 67Cu-SAR-bisPSMA has reached undetectable prostate specific antigen (PSA) levels using PET" https:/
Maxone73
in
Advanced Prostate Cancer
5 months ago
Once I start supplementing B12, will my B12 blood tests still be accurate?
I would like to know if blood tests will still be a useful measure of my B12 levels, once I have started supplementing B12. I would be testing active B12. The reason I ask is that I have read pernicious anemia people saying that once they start injections (and supplements too maybe), that the B12 blood
I would like to know if blood tests will still be a useful measure of my B12 levels, once I have started supplementing B12. I would be testing active B12. The reason I ask is that I have read pernicious anemia people saying that once they start injections (and supplements too maybe), that the B12 blood
Carrie234
in
Thyroid UK
5 days ago
Lupus toothpaste reaction
Hi all, I have had Lupus for a long time but it never affected my mouth before. After a very stressful few weeks/months, I now have a mouth full of ulcers. Cracks on my tongue, lips and the skin around my mouth. I was putting the ulcers down to the Lupus. But everytime I brush my teeth now, my mouth
Hi all, I have had Lupus for a long time but it never affected my mouth before. After a very stressful few weeks/months, I now have a mouth full of ulcers. Cracks on my tongue, lips and the skin around my mouth. I was putting the ulcers down to the Lupus. But everytime I brush my teeth now, my mouth
LupusMigraineetc
in
LUPUS UK
6 days ago
Newly diagnosed
Hello. I felt unwell for a long time. I've been diagnosed with underactive thyroid and started treatment. My symptoms have been severe and I've really struggled. I feel like every part of my body has been effected and yet from the outside no one can tell and it's hard for people to understand how bad
Hello. I felt unwell for a long time. I've been diagnosed with underactive thyroid and started treatment. My symptoms have been severe and I've really struggled. I feel like every part of my body has been effected and yet from the outside no one can tell and it's hard for people to understand how bad
Plumbobmummyreads
in
Thyroid UK
6 days ago
sun sensitivity
curious question- does Levothyroxine effect you in the sun?? Iāve never had any issues before being in the sun- and today Iāve been out maybe for an hour or so and my skin is so sore and itchy?? I know with having a underactive thyroid you get dry skin etc but this is bizzare?
curious question- does Levothyroxine effect you in the sun?? Iāve never had any issues before being in the sun- and today Iāve been out maybe for an hour or so and my skin is so sore and itchy?? I know with having a underactive thyroid you get dry skin etc but this is bizzare?
Lisalee123456
in
Thyroid UK
6 days ago
Dam Lupus
I have only one thing to say about this dam Lupus tonight! "I Want My Mammy" š
I have only one thing to say about this dam Lupus tonight! "I Want My Mammy" š
Will1408
in
LUPUS UK
7 days ago
rheumatoid nodules
I was diagnosed with Adult Onset Stills disease aged 17 in 1979 which is autoimmune RA. Iām experiencing bilateral nodules (Dip) in the tip joint of both idex fingers. Numbness, stiffness, redness, soreness, stiffness and itchiness, really weird . Anyone else?
I was diagnosed with Adult Onset Stills disease aged 17 in 1979 which is autoimmune RA. Iām experiencing bilateral nodules (Dip) in the tip joint of both idex fingers. Numbness, stiffness, redness, soreness, stiffness and itchiness, really weird . Anyone else?
Stills
in
NRAS
7 days ago
Underactive thyroid and Peri menopause
Hi, I have started perimenopause and having symptons e.g heat palpatations (tests done but no other medical issues found) mood swings, aches and pains etcā¦ and I am trying to find solutions to help. Have started taking viticulture supplements but it seems really confusing as to which ones are safe
Hi, I have started perimenopause and having symptons e.g heat palpatations (tests done but no other medical issues found) mood swings, aches and pains etcā¦ and I am trying to find solutions to help. Have started taking viticulture supplements but it seems really confusing as to which ones are safe
Tracey8
in
Thyroid UK
7 days ago
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