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Hypomyelination and congenital cataract
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Cataract surgery due to steroid medication
Hi all, I have Minimal Change Disease and have been on various doses of prednisolone since Nov 22. I've now got cataracts and my right eye needs surgery. I'm 39 and most of the information online seems targeted at older patients. Can anyone offer advice? For instance I'm used to wearing glasses for short-sightedness
Hi all, I have Minimal Change Disease and have been on various doses of prednisolone since Nov 22. I've now got cataracts and my right eye needs surgery. I'm 39 and most of the information online seems targeted at older patients. Can anyone offer advice? For instance I'm used to wearing glasses for short-sightedness
CagePow
in
Kidney Disease
1 month ago
neck pain with clicking and popping when I move
I've had clicking and popping and pain in the muscles of my neck for a couple of months . I just figured it was a stiff neck from reading and looking down and it would go away. My PMR is under control at 3.5 mg . Just had a small flare so went up to 8 mg for 6 days. It did not change how my neck felt
I've had clicking and popping and pain in the muscles of my neck for a couple of months . I just figured it was a stiff neck from reading and looking down and it would go away. My PMR is under control at 3.5 mg . Just had a small flare so went up to 8 mg for 6 days. It did not change how my neck felt
Paperroses
in
PMRGCAuk
1 month ago
A YAG capsulotomy
Has anyone any experience of this? Did it help if so? A YAG capsulotomy is a special laser treatment used to improve the vision after cataract surgery. It is a simple, commonly performed procedure which is very safe. During your cataract operation, the natural ens inside the eye that had become cloudy
Has anyone any experience of this? Did it help if so? A YAG capsulotomy is a special laser treatment used to improve the vision after cataract surgery. It is a simple, commonly performed procedure which is very safe. During your cataract operation, the natural ens inside the eye that had become cloudy
Safehaven23
in
Glaucoma UK
1 month ago
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Possible new treatments for PMR and GCA?
Thanks for the info on your blog. I’ve just rejoined as CANUKUS. I’ve had GCA and PMR for about 11 years now. All I’m taking that’s directly related to those maladies is Pred , down to 2.5 mg- occasionally 5mg daily and Paracetamol 1/2 gram when I get an occasional flare. GCA seriously affected my
Thanks for the info on your blog. I’ve just rejoined as CANUKUS. I’ve had GCA and PMR for about 11 years now. All I’m taking that’s directly related to those maladies is Pred , down to 2.5 mg- occasionally 5mg daily and Paracetamol 1/2 gram when I get an occasional flare. GCA seriously affected my
Canuk
in
PMRGCAuk
1 month ago
Frequent Eye Prescription Changes and Cataract Surgery
Hi all, I am a GCA patient since AUG 22. I started on 60 MG Prednisone and have tapered to 5.5 mg since then using DSNS. I have had vision problems almost from the start -- blurry vision mostly, but now I have significant cataracts -- AND I've had to change my prescription 4 times since AUG 22. My
Hi all, I am a GCA patient since AUG 22. I started on 60 MG Prednisone and have tapered to 5.5 mg since then using DSNS. I have had vision problems almost from the start -- blurry vision mostly, but now I have significant cataracts -- AND I've had to change my prescription 4 times since AUG 22. My
montebello
in
PMRGCAuk
4 months ago
Finger misbehaving (!) ...Ulnar Deviation
Hello, I recently noticed my middle finger has gone bent towards the pinky finger. I couldn't believe my eyes and did internet search. It happens to people with RA and Lupus. A bit shocking. I have been doing mild squeezing exercise daily to help increase my hand strength. I think it may be due to
Hello, I recently noticed my middle finger has gone bent towards the pinky finger. I couldn't believe my eyes and did internet search. It happens to people with RA and Lupus. A bit shocking. I have been doing mild squeezing exercise daily to help increase my hand strength. I think it may be due to
Paprika60
in
LUPUS UK
5 months ago
GCA Concerns, Cold and Eyes
I hope everyone had as wonderful a Christmas as I did, despite our health battles. I flew to Arkansas where 2 of my adult kids and 4 of my grandkids live. 2 other adult kids and their spouse and fiancé came, and it’s been a wonderful time. A cold was going around, and I caught it. Just the sniffles,
I hope everyone had as wonderful a Christmas as I did, despite our health battles. I flew to Arkansas where 2 of my adult kids and 4 of my grandkids live. 2 other adult kids and their spouse and fiancé came, and it’s been a wonderful time. A cold was going around, and I caught it. Just the sniffles,
Lenore58
in
PMRGCAuk
5 months ago
Confused…?
Have had two successful Trabs. and now have been advised that Cataracts are present and are beginning to cause a problem, but have been advised that cataract surgery may have negative effect on Trabs? Any experience of this situation out there?👍
Have had two successful Trabs. and now have been advised that Cataracts are present and are beginning to cause a problem, but have been advised that cataract surgery may have negative effect on Trabs? Any experience of this situation out there?👍
Hypnotoad_68
in
Glaucoma UK
2 months ago
Right Atrial Hypertrophy
Good morning. Has anyone ever been diagnosed with right atrial enlargement (RAH)? If yes, what was/is the experience? What were the options as it relates to medication?
Good morning. Has anyone ever been diagnosed with right atrial enlargement (RAH)? If yes, what was/is the experience? What were the options as it relates to medication?
Ocean3
in
AF Association
6 months ago
Vitamin B6 Toxicity: Available Testing of B6 Plasma Level Does NOT Tell You What You Need to Know
[u]
Background
[/u]: Vitamin B6 participates as a coenzyme in over 100 different biochemical reactions. When it does so it is converted to the inactive form, pyridoxine. The body contains a recycling loop that restores the pyridoxine to the active form, P5P. Vitamin B2 is required for this process
[u]
Background
[/u]: Vitamin B6 participates as a coenzyme in over 100 different biochemical reactions. When it does so it is converted to the inactive form, pyridoxine. The body contains a recycling loop that restores the pyridoxine to the active form, P5P. Vitamin B2 is required for this process
park_bear
in
Cure Parkinson's
6 months ago
cataract Surgery
I needed eye surgery to remove cataracts from both eyes, my first eye surgery was in April 2022, I then had to wait for clear vision in eye after surgery before the cataract in my second eye was removed. After both eyes regained clear vision, you need to have an eye test, and possibly get new spectacles
I needed eye surgery to remove cataracts from both eyes, my first eye surgery was in April 2022, I then had to wait for clear vision in eye after surgery before the cataract in my second eye was removed. After both eyes regained clear vision, you need to have an eye test, and possibly get new spectacles
Veteran250
in
Anxiety and Depression Support
3 months ago
New treatment plan GCA
Hi! I met with my rheumy yesterday and now seven months into my treatment for GCA. Initially I was told that I would be on Actemra for one year with Prednisone and then Methotrexate. Yesterday, I was informed that there will be no Methotrexate and from month ten, I move to fortnightly Actemra injections
Hi! I met with my rheumy yesterday and now seven months into my treatment for GCA. Initially I was told that I would be on Actemra for one year with Prednisone and then Methotrexate. Yesterday, I was informed that there will be no Methotrexate and from month ten, I move to fortnightly Actemra injections
Bessyg
in
PMRGCAuk
6 months ago
Methotrexate or Prednisone which is more damaging?(also update on eyes)
Hi, it's me again. During an eye exam, I was told my optic nerve was narrow, and that I needed to be seen asap due to the risk of blindness with GCA. I got in to see a neuro ophthalmologist who told me that my optic nerve isn't narrow, it's just turned on an angle. Probably from my connective disease
Hi, it's me again. During an eye exam, I was told my optic nerve was narrow, and that I needed to be seen asap due to the risk of blindness with GCA. I got in to see a neuro ophthalmologist who told me that my optic nerve isn't narrow, it's just turned on an angle. Probably from my connective disease
potterylady
in
PMRGCAuk
6 months ago
Rate of Decrease in RBC Count
Recent diagnosis of MPN, all three counts elevated. RBC count was 1.2 million, but lowered by phlebotomy to 922,000. I have started on Hydroxyurea. Are there any resources that provide information on the rate I could expect my RBC count to go down? 100K/month, 50K/month, etc. Thanks! hsdale3
Recent diagnosis of MPN, all three counts elevated. RBC count was 1.2 million, but lowered by phlebotomy to 922,000. I have started on Hydroxyurea. Are there any resources that provide information on the rate I could expect my RBC count to go down? 100K/month, 50K/month, etc. Thanks! hsdale3
hsdale3
in
MPN Voice
6 months ago
Optic nerve narrowing
Hi everyone, I've had PMR & GCA for 16 months. Currently on 15mg prednisone. Stopped Actemra 2 months ago. My eyesight in my left eye has been changing rapidly over the past several months. It's gotten really blurry. I've never needed glasses for distance, but now it's hard to drive at night or see
Hi everyone, I've had PMR & GCA for 16 months. Currently on 15mg prednisone. Stopped Actemra 2 months ago. My eyesight in my left eye has been changing rapidly over the past several months. It's gotten really blurry. I've never needed glasses for distance, but now it's hard to drive at night or see
potterylady
in
PMRGCAuk
6 months ago
Cataract surgery?
Has anyone had any cataract surgery while taking Pegasys? Is there a problem with eye surgery while taking Interferon? I'm about to be changed over to Pegasys from Hydrea, and also about to have cataract surgery. Some of the things I've read seem to indicate that may be a problem.
Has anyone had any cataract surgery while taking Pegasys? Is there a problem with eye surgery while taking Interferon? I'm about to be changed over to Pegasys from Hydrea, and also about to have cataract surgery. Some of the things I've read seem to indicate that may be a problem.
dogsandhorses
in
MPN Voice
4 months ago
Vision in the recovery weeks ( and long term) after a trabeculectomy.
I have had narrow angle glaucoma for over 10 years and despite years of drops and a laser iridotomy in both eyes my glaucoma is slowly progressing. My sight loss in my left eye is not too bad at all ( patchy small areas) but I do feel my central vision is not as good in my left eye ( no cataract or other
I have had narrow angle glaucoma for over 10 years and despite years of drops and a laser iridotomy in both eyes my glaucoma is slowly progressing. My sight loss in my left eye is not too bad at all ( patchy small areas) but I do feel my central vision is not as good in my left eye ( no cataract or other
Cyclingalong
in
Glaucoma UK
4 months ago
In hospital again
Sorry, I'm just letting you all know so I can get it off my chest. So after being in start September my pred went up to 20mg daily and life was great. Slowly it deteriorated, I cut the pred slightly getting down to 13 but this wasn't good so back up to 15. I started abatacept. A few days before I felt
Sorry, I'm just letting you all know so I can get it off my chest. So after being in start September my pred went up to 20mg daily and life was great. Slowly it deteriorated, I cut the pred slightly getting down to 13 but this wasn't good so back up to 15. I started abatacept. A few days before I felt
wilbertjellyfish
in
NRAS
6 months ago
Stopping Ibrutinib
I am 81 year old male living in London I have been on Ibrutinib for almost 6 years since 2018 after two sessions of chemo, stopped due to goldbadder removal. I started with 480 mg then after two years down to 280 and another two years down to 140 mg. I have been asked to join STATIC trial, or rahter
I am 81 year old male living in London I have been on Ibrutinib for almost 6 years since 2018 after two sessions of chemo, stopped due to goldbadder removal. I started with 480 mg then after two years down to 280 and another two years down to 140 mg. I have been asked to join STATIC trial, or rahter
jkl700
in
CLL Support
4 months ago
pharyngeal pouch surgery
I had a pharyngeal pouch repair on Wednesday, they put 3 staples in my throat to close it, has anyone else had this done, and how long was it to feel ok again ?
I had a pharyngeal pouch repair on Wednesday, they put 3 staples in my throat to close it, has anyone else had this done, and how long was it to feel ok again ?
jools34
in
NRAS
6 months ago
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