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Patient's view least important in diagnosis 🙄
Who'd have thought it? Research for Lupus Trust and in a Sjogren's UK newsletter but very applicable for us and others...https://academic.oup.com/rheumatology/advance-article/doi/10.1093/rheumatology/kead685/7473364?login=false UPDATE: larger photos of all three pages of the article uploaded below.
Who'd have thought it? Research for Lupus Trust and in a Sjogren's UK newsletter but very applicable for us and others...https://academic.oup.com/rheumatology/advance-article/doi/10.1093/rheumatology/kead685/7473364?login=false UPDATE: larger photos of all three pages of the article uploaded below.
Agitator23
in
Thyroid UK
1 month ago
Looking for typical Prednisone reduction schedule new on Actemra
Haven't been around much lately. This has probably been the worst, six months of my seven years with pmr and final recent eye surgery for double vision 7.8 Have spent the last six months deciding on starting Actemra at the urging of my rheumatologist. Round and round with insurance (U.S.) appeal, re-submission
Haven't been around much lately. This has probably been the worst, six months of my seven years with pmr and final recent eye surgery for double vision 7.8 Have spent the last six months deciding on starting Actemra at the urging of my rheumatologist. Round and round with insurance (U.S.) appeal, re-submission
JanetGarrettN
in
PMRGCAuk
1 month ago
Progynova with vitamin supplements
Hello ladies, hope everyone is doing well.Has anyone taken Progynova 2mg with vitamin D &E and fish oil supplements and pregnacare. Is it ok to mix the supplements with Progynova? Day 8 scan showed 5.5 endometrial lining in the middle while the sides it was 4, is it normal or the lining is to thin.
Hello ladies, hope everyone is doing well.Has anyone taken Progynova 2mg with vitamin D &E and fish oil supplements and pregnacare. Is it ok to mix the supplements with Progynova? Day 8 scan showed 5.5 endometrial lining in the middle while the sides it was 4, is it normal or the lining is to thin.
Shazchan
in
Fertility Network UK
2 months ago
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Joint surgery and how to avoid it
I was diagnosed with RA in December and started methotrexate. I have been reading posts in this group and searching previous posts and finding them so helpful, thanks to everybody who shares their experiences. I have noticed quite a lot of people sharing about joint surgery and joint correction and
I was diagnosed with RA in December and started methotrexate. I have been reading posts in this group and searching previous posts and finding them so helpful, thanks to everybody who shares their experiences. I have noticed quite a lot of people sharing about joint surgery and joint correction and
purplecyclist
in
NRAS
2 months ago
Should I consider Self Injections
Hi everyone, this is my 1st post. I was diagnosed with PA by my GP almost a year ago, since then she just believes that prescribing me a B12 injection every 3 months is sufficient. I also have an under active thyroid & I have for the last 5 years been suffering going through the menopause, so theres
Hi everyone, this is my 1st post. I was diagnosed with PA by my GP almost a year ago, since then she just believes that prescribing me a B12 injection every 3 months is sufficient. I also have an under active thyroid & I have for the last 5 years been suffering going through the menopause, so theres
4mgs
in
Pernicious Anaemia Society
2 months ago
Does GCA affect eyes in an all-or-nothing way, or are there degrees?
Hello GCA folks, I am on month 3 of prednisone (currently 15 mg), after PMR diagnosis in early June. Age 60. My question for you is: when your GCA came on, did you experience a sudden loss of vision, or did it come on gradually? And if gradual, did it affect all ranges (i.e., near, mid- and distance
Hello GCA folks, I am on month 3 of prednisone (currently 15 mg), after PMR diagnosis in early June. Age 60. My question for you is: when your GCA came on, did you experience a sudden loss of vision, or did it come on gradually? And if gradual, did it affect all ranges (i.e., near, mid- and distance
Bunchberry
in
PMRGCAuk
2 months ago
self inject journey
Hi all So have ordered B12 from Versandepo.de. (I think - bad brain fog at mo) I need to order needles etc from medisave, as recommended on here, any one advise list of what to order, going to do subcut as not good with needles….🤢 (horrible childhood exp). IM Injection at Gp Monday but not going to
Hi all So have ordered B12 from Versandepo.de. (I think - bad brain fog at mo) I need to order needles etc from medisave, as recommended on here, any one advise list of what to order, going to do subcut as not good with needles….🤢 (horrible childhood exp). IM Injection at Gp Monday but not going to
Bacca
in
Pernicious Anaemia Society
2 months ago
Wake up every hour in the night due to stabbing pain in one eye after vinegar exposure two weeks ago
Hey people.. I would really appreciate some help with this issue if anyone been in the same situation as its making my life horrible right now. Two weeks ago I was cleaning and got a splash of house hold 5% vinegar in my right eye. It stung a bit and I rinsed with running water, not right away, but
Hey people.. I would really appreciate some help with this issue if anyone been in the same situation as its making my life horrible right now. Two weeks ago I was cleaning and got a splash of house hold 5% vinegar in my right eye. It stung a bit and I rinsed with running water, not right away, but
FreeS
in
Glaucoma UK
2 months ago
Study Shows Improvement in Tremors After Injection of Genetic Material Into Brain
The small study represents the first successful clinical trial comparing a gene-based treatment to sham treatment in Parkinson’s or any neurologic disorder, says Michael Kaplitt, MD, PhD, vice president for research in the department of neurological surgery at Weill Cornell Medical College in New York
The small study represents the first successful clinical trial comparing a gene-based treatment to sham treatment in Parkinson’s or any neurologic disorder, says Michael Kaplitt, MD, PhD, vice president for research in the department of neurological surgery at Weill Cornell Medical College in New York
Farooqji
in
Cure Parkinson's
2 months ago
Short sighted
Am I the only one that surgery went fine but they put long distance lens in and was long sighted before now after surgery I am short sighted yes I have high they was worried eye pressure could spike. But now I feel let down and un sure what to do with other eye as my eye sight in the eye were cataract
Am I the only one that surgery went fine but they put long distance lens in and was long sighted before now after surgery I am short sighted yes I have high they was worried eye pressure could spike. But now I feel let down and un sure what to do with other eye as my eye sight in the eye were cataract
Hidden
in
Glaucoma UK
2 months ago
Pernicious anemia and cataract
Hi I'm a 56 year young woman, who got diagnosed with PA and on B12injections every 2 months . Just recently I had to go and get my eyes checked because I was getting blurred vision in one eye. Only to find out that in 2 yrs iv got cataracts in both eyes and need surgery. Ithe question asking is there
Hi I'm a 56 year young woman, who got diagnosed with PA and on B12injections every 2 months . Just recently I had to go and get my eyes checked because I was getting blurred vision in one eye. Only to find out that in 2 yrs iv got cataracts in both eyes and need surgery. Ithe question asking is there
Wibblewobble14
in
Pernicious Anaemia Society
2 months ago
advice on the add ons for glasses ? And visual fields
hello there, I would be grateful for any one’s experience to get the best from my reading and distance glasses. Long story but am needing to change what I currently have. Firstly what actually is the best lighting for in the home? Not sure if leds are bright enough? It’s it a warm light or white light
hello there, I would be grateful for any one’s experience to get the best from my reading and distance glasses. Long story but am needing to change what I currently have. Firstly what actually is the best lighting for in the home? Not sure if leds are bright enough? It’s it a warm light or white light
Ughb
in
Glaucoma UK
2 months ago
PD and recovery from anesthesia
I was diagnosed 8 years ago and I'm on a daily regimen including CL 25-100s. I had a colonoscopy yesterday with Propofol administered and I'm having some trouble recovering fully today. Primarily freezing and weakness. Anyone else have this experience and if so how long did it last? Thank you
I was diagnosed 8 years ago and I'm on a daily regimen including CL 25-100s. I had a colonoscopy yesterday with Propofol administered and I'm having some trouble recovering fully today. Primarily freezing and weakness. Anyone else have this experience and if so how long did it last? Thank you
willowone123
in
Cure Parkinson's
2 months ago
Aqueous shunt implant surgery
Hi Everyone, I have just been recommended the Aqueous shunt surgery. I have had Glaucoma for years (since 30s, now I'm in my mid 40s) and was on latanoprost and everything was working well until I had the retina detachment surgery in May and my pressure will not drop, tried various drops without much
Hi Everyone, I have just been recommended the Aqueous shunt surgery. I have had Glaucoma for years (since 30s, now I'm in my mid 40s) and was on latanoprost and everything was working well until I had the retina detachment surgery in May and my pressure will not drop, tried various drops without much
MeoWow
in
Glaucoma UK
2 months ago
Finger joints and other things
Hi..I have been taken off leflunamide, as was getting so many infections, awaiting new biologic ...but in meantime ,fingers agony,and one stuck in bent position then when released its squint !also both hands keep locking into like a spasticity if hold anything for small length of time in addition blepharitis
Hi..I have been taken off leflunamide, as was getting so many infections, awaiting new biologic ...but in meantime ,fingers agony,and one stuck in bent position then when released its squint !also both hands keep locking into like a spasticity if hold anything for small length of time in addition blepharitis
Luppykate
in
LUPUS UK
2 months ago
Pregnenolone study for L-DOPA induced dyskinesia
Here is a link to a helpful study - Pregnenolone for the treatment of L-DOPA-induced ... National Institutes of Health (NIH) (.gov) https://pubmed.ncbi.nlm.nih.gov › ...
Here is a link to a helpful study - Pregnenolone for the treatment of L-DOPA-induced ... National Institutes of Health (NIH) (.gov) https://pubmed.ncbi.nlm.nih.gov › ...
Trailing
in
Cure Parkinson's
2 months ago
new person
hi I’m 51 and have just been diagnosed with advanced glucoma . (I mistakenly thought I just needed glasses 😬My vision fields are sounding quite limited and I am looking for tips to help make life easier and hopefully to feel more confident with basics like walking, working, busy or new places . I would
hi I’m 51 and have just been diagnosed with advanced glucoma . (I mistakenly thought I just needed glasses 😬My vision fields are sounding quite limited and I am looking for tips to help make life easier and hopefully to feel more confident with basics like walking, working, busy or new places . I would
Ughb
in
Glaucoma UK
2 months ago
Dry eyes ,disrupted tear film, ?Sjogrens
I believe we have a few members who have posted about this in the past. I'm a PMR long termer diagnosed in Nov 2017 and currently taking 2.5mg Prednisolone. In June 2023 I had a revision of refractive surgery to both eyes at a world leading specialist centre in London. The procedure is known to affect
I believe we have a few members who have posted about this in the past. I'm a PMR long termer diagnosed in Nov 2017 and currently taking 2.5mg Prednisolone. In June 2023 I had a revision of refractive surgery to both eyes at a world leading specialist centre in London. The procedure is known to affect
PMRnewbie2017
in
PMRGCAuk
2 months ago
Another update on the swollen eye
Back in Moorfields today, turns out the original diagnosis was Retinal detachment,Anterior Uveitis, possible Scleritis. After all the tests today and a weekend of 60mg steroids the eye has improved, no need for op today to reattach retina as it is healing a bit. The cause of the inflammation seems to
Back in Moorfields today, turns out the original diagnosis was Retinal detachment,Anterior Uveitis, possible Scleritis. After all the tests today and a weekend of 60mg steroids the eye has improved, no need for op today to reattach retina as it is healing a bit. The cause of the inflammation seems to
Fatsiajaponica
in
PMRGCAuk
2 months ago
Hydroxychloroquine, and high blood sugar
When I agreed to try Hydroxychloroquine I must admit being a little anxious about effects/side-effects. Started in May I think,200mg daily, HbA1c was 54 at last November 2023. HbA1c 30th May was 66, I know Hydroxy wouldn't have done this but just received results from annual diabetic
When I agreed to try Hydroxychloroquine I must admit being a little anxious about effects/side-effects. Started in May I think,200mg daily, HbA1c was 54 at last November 2023. HbA1c 30th May was 66, I know Hydroxy wouldn't have done this but just received results from annual diabetic
Polo22
in
NRAS
2 months ago
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