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Experiences with
Gaucher disease type 1 (GD1)
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My big discovery. Sjogren’s UCTD Fibro…
in my constant quest for understanding so I can help myself I have made a big discovery. About 5 years ago I was diagnosed with Sjogren’s and I understood to be Raynauds, and dry eyes, mouth and vagina. This never sat comfortably with me, it didn’t cover my symptoms. I’m still struggling a lot with
in my constant quest for understanding so I can help myself I have made a big discovery. About 5 years ago I was diagnosed with Sjogren’s and I understood to be Raynauds, and dry eyes, mouth and vagina. This never sat comfortably with me, it didn’t cover my symptoms. I’m still struggling a lot with
IsleofWight1
in
LUPUS UK
1 month ago
Am i catastrophizing over my results
Hi. I’m a little confused over my situation.After Cyberknife treatment and two years on ADT with a constant PSA of 0.02 post treatment .My PSA started to rise and at 4.1 approximately I had a PSMA scan my second .i also had one 3 years previous to that and both were clear . My MO has me back on ADT
Hi. I’m a little confused over my situation.After Cyberknife treatment and two years on ADT with a constant PSA of 0.02 post treatment .My PSA started to rise and at 4.1 approximately I had a PSMA scan my second .i also had one 3 years previous to that and both were clear . My MO has me back on ADT
Walliam
in
Advanced Prostate Cancer
6 months ago
MCTD diagnosis, finally!
Hi everyone. If you've been following my posts, you probably know I've been very frustrated with the NHS. I decided to go to India and get all my tests done and see a doctor as well. I'm in the clear for Hashimoto's, Coeliac disease, RA and lupus. I have mixed connective tissue disease. The increasing
Hi everyone. If you've been following my posts, you probably know I've been very frustrated with the NHS. I decided to go to India and get all my tests done and see a doctor as well. I'm in the clear for Hashimoto's, Coeliac disease, RA and lupus. I have mixed connective tissue disease. The increasing
MauveMouse
in
Thyroid UK
1 month ago
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Add Nubeqa to Orgovyx?
Age 81. I had prostate radiation in 2021, and pelvic node radiation in 2023. PSA was 3.78 in Dec 2023. PSMA PET then showed cancer growing in prostate, shrinking in pelvic node, but spread to an abdominal node. I have started ADT with Orgovyx (relugolix) and want to add an ARI. The urologist wants
Age 81. I had prostate radiation in 2021, and pelvic node radiation in 2023. PSA was 3.78 in Dec 2023. PSMA PET then showed cancer growing in prostate, shrinking in pelvic node, but spread to an abdominal node. I have started ADT with Orgovyx (relugolix) and want to add an ARI. The urologist wants
vintage42
in
Advanced Prostate Cancer
6 months ago
JUNE NEWSLETTER
our June newsletter will be coming out soon. If you are not already a member then sign up to the Pernicious Anaemia Society https://pernicious-anaemia-society.org/member/ so you don't miss out! If you are a member and are not getting your newsletter make sure to check in Spam/Junk or check that we
our June newsletter will be coming out soon. If you are not already a member then sign up to the Pernicious Anaemia Society https://pernicious-anaemia-society.org/member/ so you don't miss out! If you are a member and are not getting your newsletter make sure to check in Spam/Junk or check that we
PAScomms
in
Pernicious Anaemia Society
1 month ago
Intermittent fasting
Does anyone have experience with intermittent fasting? It is supposed to help with autoimmune diseases.
Does anyone have experience with intermittent fasting? It is supposed to help with autoimmune diseases.
Swizzly
in
PMRGCAuk
1 month ago
Constipation relief for me
Been struggling with ongoing constipation for decades, due to slow ?motility? .Found this product which has been a life saver and really works for me. Super Cleanse by Nature's Secret | Herbal and Probiotic Support, 100 Tablets It contains Cascara Sagrada stimulat which maybe habit forming, so the
Been struggling with ongoing constipation for decades, due to slow ?motility? .Found this product which has been a life saver and really works for me. Super Cleanse by Nature's Secret | Herbal and Probiotic Support, 100 Tablets It contains Cascara Sagrada stimulat which maybe habit forming, so the
ewebhook
in
Cure Parkinson's
6 months ago
Therio
https://therio.me/ [i] I don't know anything about the company. I met Micah seven years ago at a medical conference. He was selling Ozone generators. I ended up buying one and have been using it ever since. It's all about home-testing various conditions from Parkinson's to cancer to Alzheimer's
https://therio.me/ [i] I don't know anything about the company. I met Micah seven years ago at a medical conference. He was selling Ozone generators. I ended up buying one and have been using it ever since. It's all about home-testing various conditions from Parkinson's to cancer to Alzheimer's
kaypeeoh
in
Cure Parkinson's
6 months ago
Trimethoprim - ET
I have unfortunately developed a urinary tract infection. I am penicillin-sensitive and have been prescribed trimethoprim as a seven day course. I have been reading up on it and see that it should not be prescribed for patients with "blood dyscrasias" because of some interaction with folate. Does
I have unfortunately developed a urinary tract infection. I am penicillin-sensitive and have been prescribed trimethoprim as a seven day course. I have been reading up on it and see that it should not be prescribed for patients with "blood dyscrasias" because of some interaction with folate. Does
Jelbea
in
MPN Voice
6 months ago
Unsure of best option in early prostate cancer diagnosis.
I have had PSA tests annually for 10 years and in Oct 2023 had an elevated 6.42 result. Was referred to a urologist, whom performed a DRE. There was prostate enlargement but no tumor discovered through DRE. After discussing several options, I decided to have a biopsy on Nov 21, 2023. Dec 5, 2023,
I have had PSA tests annually for 10 years and in Oct 2023 had an elevated 6.42 result. Was referred to a urologist, whom performed a DRE. There was prostate enlargement but no tumor discovered through DRE. After discussing several options, I decided to have a biopsy on Nov 21, 2023. Dec 5, 2023,
cobrasc429
in
Advanced Prostate Cancer
6 months ago
wheat in cosmetics
I’m recently diagnosed with coeliac disease. I’m following a gluten free diet but have noticed that a product I bought to promote hair growth contains wheat germ amongst many other ingredients. As this product needs to be massaged into the scalp should I not use it?
I’m recently diagnosed with coeliac disease. I’m following a gluten free diet but have noticed that a product I bought to promote hair growth contains wheat germ amongst many other ingredients. As this product needs to be massaged into the scalp should I not use it?
Veggie2
in
Gluten Free Guerrillas
6 months ago
Is Low Dose Naltrexone (LDN) ever used in Sjogren's syndrome?
Is Low Dose Naltrexone (LDN) ever used in Sjogren's syndrome? Answered by Linda Elsegood, LDNRT Founder https://youtu.be/NQXRcsKpdOk
Is Low Dose Naltrexone (LDN) ever used in Sjogren's syndrome? Answered by Linda Elsegood, LDNRT Founder https://youtu.be/NQXRcsKpdOk
Shewulf
Administrator
in
LDN Research Trust
2 months ago
lupus or fibromyalgia
hi has anyone else in a similarly position my GP can’t tell whether I have fibromyalgia or lupus or a combination of the two
hi has anyone else in a similarly position my GP can’t tell whether I have fibromyalgia or lupus or a combination of the two
Pricey110
in
Fibromyalgia Action UK
2 months ago
fibromyalgia or lupus
hi has anyone else been diagnosed with fibromyalgia but you think it’s more likely to be Lupus. I am constantly tired and just don’t have any energy, hate direct sunlight and have constant pain in my joints. How do I get my GP to actually come to a conclusion it’s so frustrating not knowing.
hi has anyone else been diagnosed with fibromyalgia but you think it’s more likely to be Lupus. I am constantly tired and just don’t have any energy, hate direct sunlight and have constant pain in my joints. How do I get my GP to actually come to a conclusion it’s so frustrating not knowing.
Pricey110
in
LUPUS UK
2 months ago
High LFT results
I had my first 6 month appointment with my liver nurse last week. As part of the review I had a routine bloody test for LFT. My previous blood test was on the 14th Dec 23 and my numbers were gradually reducing. I just had the results this morning and pretty much all my levels have increased including
I had my first 6 month appointment with my liver nurse last week. As part of the review I had a routine bloody test for LFT. My previous blood test was on the 14th Dec 23 and my numbers were gradually reducing. I just had the results this morning and pretty much all my levels have increased including
Dexter786
in
British Liver Trust
6 months ago
Does fear play a role with pernicious anemia?
Hey guys, I hope this message finds you well. It's good to have a place to come that someone has some understanding of what you're going through! I messaged here before about having fear of a lot of things that I didn't have before this PA/B12 deficiency and sometimes I think of myself as a wimp because
Hey guys, I hope this message finds you well. It's good to have a place to come that someone has some understanding of what you're going through! I messaged here before about having fear of a lot of things that I didn't have before this PA/B12 deficiency and sometimes I think of myself as a wimp because
25092
in
Pernicious Anaemia Society
2 months ago
Provenge (only) - impact on overall survival
I just got insurance approval for Provenge...out of pocket is really high so now I'm doing a cost benefit analysis in my mind. I've seen many different articles showing that Provenge ALONE only extends overall survival by 4-15 months. Does that sound correct? Tall_Allen mentioned adding xofigio for
I just got insurance approval for Provenge...out of pocket is really high so now I'm doing a cost benefit analysis in my mind. I've seen many different articles showing that Provenge ALONE only extends overall survival by 4-15 months. Does that sound correct? Tall_Allen mentioned adding xofigio for
Gl448
in
Advanced Prostate Cancer
6 months ago
Blood tests whilst pregnant
This is a question after reading posts+research. I understand there is a Def link between underactive thyroid/Hashimotos kicking off whilst pregnant+a link between Hashimotos+pre-eclampsia. Speaking from experience many years ago, for me this seems clear. So, just as mother's are checked re diabetes
This is a question after reading posts+research. I understand there is a Def link between underactive thyroid/Hashimotos kicking off whilst pregnant+a link between Hashimotos+pre-eclampsia. Speaking from experience many years ago, for me this seems clear. So, just as mother's are checked re diabetes
Lottyplum
in
Thyroid UK
2 months ago
Medical lecture and Q&A - Hosted by Dr. Arvind Kaul (with guest speakers) - 15th June 9.30am
Consultant Rheumatologist Dr Arvind Kaul, the Head of Rheumatology & Lupus Patient Care at St. George's Hospital will be hosting the next South London Lupus Group Medical Patient-Focused Lecture. Our agenda for the morning as follows: 1. 09.30: Registration and Welcome 2. 10.00: Melanie Sloan:
Consultant Rheumatologist Dr Arvind Kaul, the Head of Rheumatology & Lupus Patient Care at St. George's Hospital will be hosting the next South London Lupus Group Medical Patient-Focused Lecture. Our agenda for the morning as follows: 1. 09.30: Registration and Welcome 2. 10.00: Melanie Sloan:
michaellasmith
Administrator
in
LUPUS UK
2 months ago
What is folic acid used for?
For other reasons, nothing to do with Pernicious Anaemia, I was checking the Patient Information Leaflet for a UK folic acid product. And I noticed this bit: [i]Ennogen Pharma Limited[/i] [i]
Folic Acid Tablets 5mg
[/i] [i]1. WHAT FOLIC ACID TABLETS ARE AND[/i] [i]WHAT THEY ARE USED FOR[/i]
For other reasons, nothing to do with Pernicious Anaemia, I was checking the Patient Information Leaflet for a UK folic acid product. And I noticed this bit: [i]Ennogen Pharma Limited[/i] [i]
Folic Acid Tablets 5mg
[/i] [i]1. WHAT FOLIC ACID TABLETS ARE AND[/i] [i]WHAT THEY ARE USED FOR[/i]
helvella
in
Pernicious Anaemia Society
2 months ago
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