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New experiences of diagnosis video for World Lupus Day
This World Lupus Day we're launching a new video with Khiry, Beth, and Maryann sharing their experiences of receiving a diagnosis of lupus. You can watch the video here: https://www.youtube.com/watch?v=7VxG2WbrsGI You can also read this blog article in which Khiry, Beth, and Maryann talk about their
This World Lupus Day we're launching a new video with Khiry, Beth, and Maryann sharing their experiences of receiving a diagnosis of lupus. You can watch the video here: https://www.youtube.com/watch?v=7VxG2WbrsGI You can also read this blog article in which Khiry, Beth, and Maryann talk about their
Debbie_kinsey
Administrator
in
LUPUS UK
8 days ago
Article: Exciting time for biological use in Lupus
https://www.healio.com/news/rheumatology/20240425/exciting-time-biologic-use-in-moderate-to-severe-lupus-rose-45-since-2021?utm_source=selligent&utm_medium=email&utm_campaign=news
https://www.healio.com/news/rheumatology/20240425/exciting-time-biologic-use-in-moderate-to-severe-lupus-rose-45-since-2021?utm_source=selligent&utm_medium=email&utm_campaign=news
VeeWat
in
LUPUS UK
8 days ago
PET Brain Scans Find ‘Smoldering’ Inflammation in Multiple Sclerosis Patients
A new study from Brigham and Women’s Hospital suggests PET brain scans could reveal hidden inflammation in patients with multiple sclerosis (MS) who are being treated with highly effective treatments. The findings were published in Clinical Nuclear Medicine.
https://appliedradiology.com/Articles
A new study from Brigham and Women’s Hospital suggests PET brain scans could reveal hidden inflammation in patients with multiple sclerosis (MS) who are being treated with highly effective treatments. The findings were published in Clinical Nuclear Medicine.
https://appliedradiology.com/Articles
BettysMom
in
My MSAA Community
8 days ago
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Atarax 25mg...has anyone used it?
It's an antihistamine with sedative effects. My pharmacy suggested it as I sleep very badly and I have hay fever. After checking with my Lupus Specialist it was OK to take with my other meds I also searched online and saw its also used to treat lupus rashes and itchy skin. I'm hoping it might help my
It's an antihistamine with sedative effects. My pharmacy suggested it as I sleep very badly and I have hay fever. After checking with my Lupus Specialist it was OK to take with my other meds I also searched online and saw its also used to treat lupus rashes and itchy skin. I'm hoping it might help my
AnonLupi
in
LUPUS UK
8 days ago
Help - trouble with diagnosis
Hi there, Looking for some help/guidance here as im at a bit of a loss with what to do next. Sorry for the rambling but I feel so defeated Im34 YO Female, and for about 2 years on and off I have had a number of lupus symptoms, Raynaud's in my hands, joint pain, horrendous fatigue that means I sleep
Hi there, Looking for some help/guidance here as im at a bit of a loss with what to do next. Sorry for the rambling but I feel so defeated Im34 YO Female, and for about 2 years on and off I have had a number of lupus symptoms, Raynaud's in my hands, joint pain, horrendous fatigue that means I sleep
Severusisismydog
in
LUPUS UK
9 days ago
Living with lupus in 2024 survey - closing soon!
Lupus Europe is conducting a survey to gather insights into the experiences of individuals living with lupus across Europe. The survey is anonymous and should take approximately 10 minutes to complete. It is available in 19 different languages. To complete the survey, please click the following link
Lupus Europe is conducting a survey to gather insights into the experiences of individuals living with lupus across Europe. The survey is anonymous and should take approximately 10 minutes to complete. It is available in 19 different languages. To complete the survey, please click the following link
nakita_cambow
Moderator
in
LUPUS UK
9 days ago
Lupus Tumidus
Hi All - After months of burning and itching skin, intermittent exhaustion, irritability, on and off leg swelling and joint pain, I have been diagnosed with Lupus Tumidus. Rheumatologist has said it is not SLE and will likely never turn into SLE. (I am not convinced but one battle at a time). Does
Hi All - After months of burning and itching skin, intermittent exhaustion, irritability, on and off leg swelling and joint pain, I have been diagnosed with Lupus Tumidus. Rheumatologist has said it is not SLE and will likely never turn into SLE. (I am not convinced but one battle at a time). Does
TumidusG
in
LUPUS UK
9 days ago
Feeling lonely and fobbed off! What are these symptoms??
Hello, this is my first time posting so please bear with me.I am a 40 year old female. I was diagnosed with discoid lupus in 2005. Then a few years later, lupus panniculitis which is quite rare (fatty lumps under the skin which leave atrophies. (Mine are on my face, breasts, and arms). For the last
Hello, this is my first time posting so please bear with me.I am a 40 year old female. I was diagnosed with discoid lupus in 2005. Then a few years later, lupus panniculitis which is quite rare (fatty lumps under the skin which leave atrophies. (Mine are on my face, breasts, and arms). For the last
Starshine83
in
LUPUS UK
9 days ago
Social Isolation
Unfortunately, I don't have many friends for family to reach out to. MSAA's chat through HealthUnlocked here has provided me with much needed social connection. The MSAA help line suggested that I contact "MSFriends" so I just signed up for "MSFriends" peer support program through the National Multiple
Unfortunately, I don't have many friends for family to reach out to. MSAA's chat through HealthUnlocked here has provided me with much needed social connection. The MSAA help line suggested that I contact "MSFriends" so I just signed up for "MSFriends" peer support program through the National Multiple
donna0329
in
My MSAA Community
9 days ago
Do you have lupus or another autoimmune condition?
There is still time to complete the survey conducted by RAIRDA (Rare Autoimmune Rheumatic Disease Alliance) on what patients think about the quality of their care, guidance and treatment for their Rare Autoimmune Rheumatic Disease (RAIRD). This is to provide valuable insights into the way services are
There is still time to complete the survey conducted by RAIRDA (Rare Autoimmune Rheumatic Disease Alliance) on what patients think about the quality of their care, guidance and treatment for their Rare Autoimmune Rheumatic Disease (RAIRD). This is to provide valuable insights into the way services are
nakita_cambow
Moderator
in
LUPUS UK
10 days ago
levothyroxine
Diagnosed eight weeks ago underactive thyroid even though I had no symptoms. 25mg given and 12 days later reduced to 12.5 as I was so ill. 4 weeks later I was bedridden, severe headaches and unable to urinate so took myself off them as Surgery would not respond. Informed Surgery what I had done they
Diagnosed eight weeks ago underactive thyroid even though I had no symptoms. 25mg given and 12 days later reduced to 12.5 as I was so ill. 4 weeks later I was bedridden, severe headaches and unable to urinate so took myself off them as Surgery would not respond. Informed Surgery what I had done they
Sunny-time
in
Thyroid UK
13 days ago
Antibody blood test
Hello I hope everyone is well. I was diagnosed with hashimotos about 9 weeks ago and have been on levothyroxine 50mg, blood test due at 12 weeks. Have also been taking vit d and ferroglobin. I have awful upper back, neck and foot pain. Currently under physio. Doctor did blood tests for rheumatoid arthritis
Hello I hope everyone is well. I was diagnosed with hashimotos about 9 weeks ago and have been on levothyroxine 50mg, blood test due at 12 weeks. Have also been taking vit d and ferroglobin. I have awful upper back, neck and foot pain. Currently under physio. Doctor did blood tests for rheumatoid arthritis
Nattycake
in
Thyroid UK
13 days ago
CD20 Therapies (Ocrevus, Kesimpta, etc.) and potentially serious dental problems
This was an interesting post on the MS-blog. You have to get past the Dustin Hoffman in Marathon Man reference (which was a memorable scene!) to get down to the nitty gritty of why dental hygiene and regular checkups are so critical when when you're on certain MS therapies. https://multiple-sclerosis-research.org
This was an interesting post on the MS-blog. You have to get past the Dustin Hoffman in Marathon Man reference (which was a memorable scene!) to get down to the nitty gritty of why dental hygiene and regular checkups are so critical when when you're on certain MS therapies. https://multiple-sclerosis-research.org
CatsandCars
in
My MSAA Community
14 days ago
Difference in levels-stress?
I've been on leventhyroxine for years for underactive thyroid. Had yearly check muddle of Feb. TSH 2.09. Had full bloods for something else (WRS) and levels are 0.36 by middle if April. I'm wondering if stress can cause TSH to go up or down? Dr. Says this is in normal range for lab- but normal
I've been on leventhyroxine for years for underactive thyroid. Had yearly check muddle of Feb. TSH 2.09. Had full bloods for something else (WRS) and levels are 0.36 by middle if April. I'm wondering if stress can cause TSH to go up or down? Dr. Says this is in normal range for lab- but normal
Itsallaboutcheese
in
Thyroid UK
15 days ago
rheumatoid arthritis
Has anyone had an operation on elbow from rheumatoid arthritis? Did it help?
Has anyone had an operation on elbow from rheumatoid arthritis? Did it help?
65_women
in
NRAS
15 days ago
Thyroid or menopause - which to sort first?
I've just checked the app, and the last of my blood tests are back. I definitely have started perimenopause and as per my last post I have high TPOab, high TSH (7.5 with high ref being 4.26), and lowish T4 (14.2 of a 12—22 range). I have symptoms that overlap the two conditions, but also symptoms that
I've just checked the app, and the last of my blood tests are back. I definitely have started perimenopause and as per my last post I have high TPOab, high TSH (7.5 with high ref being 4.26), and lowish T4 (14.2 of a 12—22 range). I have symptoms that overlap the two conditions, but also symptoms that
Heappestre
in
Thyroid UK
16 days ago
PA and Sjogren’s
I posted a few days ago about dry mouth and eyes, but since then my early sjogrens bloodwork has come back positive. I am terrified! Is there anyone else who has AIG/PA and also sjogrens? I feel desperately in need of some hope and guidance…in particular I’m wondering if injections have helped with SS
I posted a few days ago about dry mouth and eyes, but since then my early sjogrens bloodwork has come back positive. I am terrified! Is there anyone else who has AIG/PA and also sjogrens? I feel desperately in need of some hope and guidance…in particular I’m wondering if injections have helped with SS
Lhood08
in
Pernicious Anaemia Society
16 days ago
Updated Lupus and the Skin booklet available now
We are proud to launch an updated version of our Lupus and the Skin information booklet. It is now available online and in hard copy from National Office. You can find more information about how the booklet was updated here: https://lupusuk.org.uk/updated-lupus-and-the-skin-booklet-available-now/ or
We are proud to launch an updated version of our Lupus and the Skin information booklet. It is now available online and in hard copy from National Office. You can find more information about how the booklet was updated here: https://lupusuk.org.uk/updated-lupus-and-the-skin-booklet-available-now/ or
Debbie_kinsey
Administrator
in
LUPUS UK
17 days ago
TIA in March
Hi, l recently had a mild TIA while in Cyprus where l live the treatment l received was excellent but the Neuroligist has prescribed Atvorstatin which l have found out shouldn’t be taken if you have an underactive Thyroid he dismissed this. Should l see my GP whilst l am in UK
Hi, l recently had a mild TIA while in Cyprus where l live the treatment l received was excellent but the Neuroligist has prescribed Atvorstatin which l have found out shouldn’t be taken if you have an underactive Thyroid he dismissed this. Should l see my GP whilst l am in UK
Tillybuds
in
Thyroid UK
18 days ago
Generic TCZ---is it available in the UK?
My friends, Without this forum, my GCA journey would have been entirely different. You have all been there to support me, educate me, and reinforce me when I thought I was sinking. It has always made me sad that TCZ is only available to GCA patients for one year, subject to review for an additional
My friends, Without this forum, my GCA journey would have been entirely different. You have all been there to support me, educate me, and reinforce me when I thought I was sinking. It has always made me sad that TCZ is only available to GCA patients for one year, subject to review for an additional
Grammy80
in
PMRGCAuk
18 days ago
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