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Experiences with
Sjogren-Larsson syndrome
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Light compression gloves
Hi everyone, does anyone have any recommendations for light compression gloves? Not the type with splint inserted. I have a swelling in my right hand (at the outer side below my wrist joint) which is very painful, am waiting to see my RA specialist but haven't received the appointment yet. I take 20mg
Hi everyone, does anyone have any recommendations for light compression gloves? Not the type with splint inserted. I have a swelling in my right hand (at the outer side below my wrist joint) which is very painful, am waiting to see my RA specialist but haven't received the appointment yet. I take 20mg
Manzana1
in
NRAS
3 days ago
Sjogrens Syndrome
Sjogrens, Raynauds, Mixed Connective Tissue Disorder….. was diagnosed maybe 20 years ago with Sjogrens. No treatment was needed other eye drops. Then I started having the dry mouth and dental issues. I currently taking 400mg daily of hydroxychloroquine. The medication has helped tremendously .
Sjogrens, Raynauds, Mixed Connective Tissue Disorder….. was diagnosed maybe 20 years ago with Sjogrens. No treatment was needed other eye drops. Then I started having the dry mouth and dental issues. I currently taking 400mg daily of hydroxychloroquine. The medication has helped tremendously .
Juanburr1950
in
Scleroderma & Raynaud's UK (SRUK)
1 month ago
A useful option-gastro resistant empty capsules
a post yesterday reminded me to tell you all that I’ve been taking my preds in gastro resistant empty capsules for a couple of months now. This means I can take them without food around midnight. But I have also taken them at 11pm ish and not noticed any difference. I asked a gp if I should still take
a post yesterday reminded me to tell you all that I’ve been taking my preds in gastro resistant empty capsules for a couple of months now. This means I can take them without food around midnight. But I have also taken them at 11pm ish and not noticed any difference. I asked a gp if I should still take
Freshairfiend
in
PMRGCAuk
2 months ago
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Recently diagnosed
I received a note from my Dr. in My Chart that due to my liver enzymes still being elevated that I meet the criteria for a diagnosis of Pbc. I had made an appointment with another Hepa for a second opinion and that appointment is in two weeks. I'm completely torn if I should bother. Its been a long time
I received a note from my Dr. in My Chart that due to my liver enzymes still being elevated that I meet the criteria for a diagnosis of Pbc. I had made an appointment with another Hepa for a second opinion and that appointment is in two weeks. I'm completely torn if I should bother. Its been a long time
Zelda5
in
PBC Foundation
3 months ago
Nailfold infection
I have my second nailfold infection in 2 months - it is proving difficult to resolve and a few days ago a telangectasia bled profusely for no reason. Is this connected to my Systemic Sclerosis or just a coincident. Thanks for any thoughts on this.
I have my second nailfold infection in 2 months - it is proving difficult to resolve and a few days ago a telangectasia bled profusely for no reason. Is this connected to my Systemic Sclerosis or just a coincident. Thanks for any thoughts on this.
janetfmauk
in
Scleroderma & Raynaud's UK (SRUK)
3 months ago
Sjogrens - Tooth Loss, Gum Disease
Hello, I'm new to this and hoping someone can help. I have Sjogrens and a couple of other autoimmune conditions. I experienced a dramatic deterioration with teeth and gums 2 years ago, dentist advised I would lose all my teeth within 6 months and because of the lack of saliva I could not get dentures
Hello, I'm new to this and hoping someone can help. I have Sjogrens and a couple of other autoimmune conditions. I experienced a dramatic deterioration with teeth and gums 2 years ago, dentist advised I would lose all my teeth within 6 months and because of the lack of saliva I could not get dentures
Crystal68
in
LUPUS UK
6 months ago
removal of rheumatoid nodule
I am due to have a nodule removed from my thumb next month under local anaesthetic. Does anyone know if I have to stop my idacio jab and if so for how long before and after? I am having trouble contacting my advise team!
I am due to have a nodule removed from my thumb next month under local anaesthetic. Does anyone know if I have to stop my idacio jab and if so for how long before and after? I am having trouble contacting my advise team!
Zip1
in
NRAS
8 months ago
LDN and Primary Sclerosing Cholangitis?
So my husband’s Hepatologist said his MRI looks like PSC. We know he has parasites because he’s been flushing them out like crazy. So we aren’t sure which came first. Anyone know if LDN can help?
So my husband’s Hepatologist said his MRI looks like PSC. We know he has parasites because he’s been flushing them out like crazy. So we aren’t sure which came first. Anyone know if LDN can help?
TruthWillSetUFree
in
LDN Research Trust
9 months ago
Me again
Hi all, Hope everyone is as well as can be 😊 Still not sure if I'm posting in the right place but you guys have always been so helpful 💕 Found out this week that the lip biopsy I had done did not have any sjorgrens syndrome showing which is what they were initially looking for, however the new rheumatologist
Hi all, Hope everyone is as well as can be 😊 Still not sure if I'm posting in the right place but you guys have always been so helpful 💕 Found out this week that the lip biopsy I had done did not have any sjorgrens syndrome showing which is what they were initially looking for, however the new rheumatologist
Haylz2109
in
LUPUS UK
11 months ago
systemic sclerosis
Does anyone suffer from terrible heat in veins and arteries(skin) yet raynaud's at the same time? But can also be shaking with cold inside - if that makes sense! I have Sjogren's and Systemic sclerosis but all the Doctors ignore the intolerable symptom of hot and cold I suffer
Does anyone suffer from terrible heat in veins and arteries(skin) yet raynaud's at the same time? But can also be shaking with cold inside - if that makes sense! I have Sjogren's and Systemic sclerosis but all the Doctors ignore the intolerable symptom of hot and cold I suffer
sessull
in
Scleroderma & Raynaud's UK (SRUK)
1 year ago
Update
I’m now down to 15mg and my stomach is still swollen but cause seems to be Serositis. My pleural effusion are 200/300mls left side and zero right side with now minimal around pericardial so steroids are definitely working indicating cause is definitely autoimmune and possibly PMR . I still don’t feel
I’m now down to 15mg and my stomach is still swollen but cause seems to be Serositis. My pleural effusion are 200/300mls left side and zero right side with now minimal around pericardial so steroids are definitely working indicating cause is definitely autoimmune and possibly PMR . I still don’t feel
Numptybrain
in
PMRGCAuk
7 days ago
Anesthesia and PD
I’m planning on having Morton’s neuroma surgery in a few weeks, unless I chicken out! I’m concerned about any negative effects because of anesthesia . I’m going to check to see if doing some type of block instead of General, is a possibility. Has anyone had that operation, or have experience with different
I’m planning on having Morton’s neuroma surgery in a few weeks, unless I chicken out! I’m concerned about any negative effects because of anesthesia . I’m going to check to see if doing some type of block instead of General, is a possibility. Has anyone had that operation, or have experience with different
Ob6842
in
Cure Parkinson's
16 days ago
Worrying blood test results ...
Hello, This is my first post - last week I noticed some quite dark patches under both arms. Was seen by GP in an hour ... gave me Clotrimazole Cream which has reduced the tone of my skin. GP said it was acanthosis nigricans... ,?? Sent me for bloods including LFT and various tests FBC. These came
Hello, This is my first post - last week I noticed some quite dark patches under both arms. Was seen by GP in an hour ... gave me Clotrimazole Cream which has reduced the tone of my skin. GP said it was acanthosis nigricans... ,?? Sent me for bloods including LFT and various tests FBC. These came
Apollo14lmp
in
British Liver Trust
16 days ago
GLP1-R agonist improves Parkinson disease symptoms
"Lixisenatide can cross the blood-brain barrier and is known to have neuroprotective properties in https://www.ccjm.org/page/mds-2023/glp1-r-agonist-parkinson#:~:text=Lixisenatide%20can%20cross%20the%20blood,%2C%20University%20Hospital%20Bordeaux%2C%20France.
"Lixisenatide can cross the blood-brain barrier and is known to have neuroprotective properties in https://www.ccjm.org/page/mds-2023/glp1-r-agonist-parkinson#:~:text=Lixisenatide%20can%20cross%20the%20blood,%2C%20University%20Hospital%20Bordeaux%2C%20France.
Gcf51
in
Cure Parkinson's
22 days ago
Urgent Synarel - help!
Hi everyone I have just had my final scan today, before ER on Monday. I take my trigger shot tomorrow- and im sure the Dr said to me to take my last Synarel/nafarelin nasal spray as usual (I have been taking it twice each nostril, 9am and 9pm) However, the paper instructions she has written down state
Hi everyone I have just had my final scan today, before ER on Monday. I take my trigger shot tomorrow- and im sure the Dr said to me to take my last Synarel/nafarelin nasal spray as usual (I have been taking it twice each nostril, 9am and 9pm) However, the paper instructions she has written down state
MollyHar
in
Fertility Network UK
1 month ago
Informing DVLA
Hi all. You've been super helpful before so wonder if you can help with another question. One for the UK based folk. Question about informing the DVLA of a TBI. Has anyone navigated this process please? I know I need to inform them and have looked at their form. I'm not currently well enough to drive
Hi all. You've been super helpful before so wonder if you can help with another question. One for the UK based folk. Question about informing the DVLA of a TBI. Has anyone navigated this process please? I know I need to inform them and have looked at their form. I'm not currently well enough to drive
Ideogram
in
Headway
1 month ago
Clonidine - success with RLS anyone?
Evening team I have a query. As some of you may remember I was prescribed Buprenorphine two years ago by a neurologist for my restless limbs. I have a feeling I may have asked this question before, maybe not in one of my posts, (can't remember!) Does anyone out there take Clonidine for RLS? if
Evening team I have a query. As some of you may remember I was prescribed Buprenorphine two years ago by a neurologist for my restless limbs. I have a feeling I may have asked this question before, maybe not in one of my posts, (can't remember!) Does anyone out there take Clonidine for RLS? if
Heatherandgorse
in
Restless Legs Syndrome
1 month ago
Efficacy of Trihexyphenidyl on Apraxia of Eyelid Opening in Parkinsonism: A Case Report
Apraxia of eyelid opening (AEO) is occasionally seen in Parkinson’s disease (PD) or related diseases. However, many clinicians have trouble with the management of AEO by Parkinsonism. The following link mentions a case of apraxia of eyelids opening in PD patient which was successfully treated with the
Apraxia of eyelid opening (AEO) is occasionally seen in Parkinson’s disease (PD) or related diseases. However, many clinicians have trouble with the management of AEO by Parkinsonism. The following link mentions a case of apraxia of eyelids opening in PD patient which was successfully treated with the
Farooqji
in
Cure Parkinson's
1 month ago
first scan anxiety! Please say something positive
i have my first scan today (13wks 1 day), i am very anxious.. i keep thinking ridiculous things like they are going to say there is no baby etc. and am horrified thinking about birth defects and chromosomal abnormalities.. any help/advice?
i have my first scan today (13wks 1 day), i am very anxious.. i keep thinking ridiculous things like they are going to say there is no baby etc. and am horrified thinking about birth defects and chromosomal abnormalities.. any help/advice?
QueenKoala
in
Pregnancy and Parenting Support
2 months ago
I did PGT-A testing, could my unborn baby have down's syndrome?
I am currently 18 weeks 5 days pregnant following a successful IVF cycle. I undertook PGT-A testing as I am 41 years old. I got a call today from my midwife advising that my blood test has come back with a higher chance result for down's syndrome. I thought that as PGT-A testing was done and showed
I am currently 18 weeks 5 days pregnant following a successful IVF cycle. I undertook PGT-A testing as I am 41 years old. I got a call today from my midwife advising that my blood test has come back with a higher chance result for down's syndrome. I thought that as PGT-A testing was done and showed
Systema23
in
Pregnancy and Parenting Support
2 months ago
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