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Great progress on Pegasys!
I’ve been on Pegasys for 16 months. When I started, my JAK-2 Allele burden was 29%. Today it is 14%! I was one of the folks who needed a higher dose of Peg to respond. Over 7 months, my dose was gradually increased, and I didn’t see a response until I was at 180mg/week. My blood work is now 100%
I’ve been on Pegasys for 16 months. When I started, my JAK-2 Allele burden was 29%. Today it is 14%! I was one of the folks who needed a higher dose of Peg to respond. Over 7 months, my dose was gradually increased, and I didn’t see a response until I was at 180mg/week. My blood work is now 100%
Minify
in
MPN Voice
1 month ago
Worried- pressure at 5 at trabeculectomy follow up today
Has anyone had to deal with low pressure after trabeculecyomy? I had the fourth of my weekly post- trabeculectomy follow ups today. The pressure was 5. Before the operation the pressure was consistently around 15. Week one after surgery it was 15, week two, 17 ( then stitch removed) Week 3 was 20. Stitch
Has anyone had to deal with low pressure after trabeculecyomy? I had the fourth of my weekly post- trabeculectomy follow ups today. The pressure was 5. Before the operation the pressure was consistently around 15. Week one after surgery it was 15, week two, 17 ( then stitch removed) Week 3 was 20. Stitch
Iona57
in
Glaucoma UK
1 month ago
Filling the syringe
I did my first 8 subcutaneous b12 injections as I was shown by the doctor. Since then the nurse at my g.p. surgery has been doing my injections every 2 weeks as prescribed. (She offered me the choice of continuing to do it myself or she would do it.)The consultant had told me if I wanted to give myself
I did my first 8 subcutaneous b12 injections as I was shown by the doctor. Since then the nurse at my g.p. surgery has been doing my injections every 2 weeks as prescribed. (She offered me the choice of continuing to do it myself or she would do it.)The consultant had told me if I wanted to give myself
Suesue246
in
Pernicious Anaemia Society
1 month ago
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SSI Registration - any reason not to?
Hi, I asked my previous eye consultant if they would fill a form out to say I was visually impaired. It was a few years ago but they refused which was frustrating because I wanted to apply for a disabled railcard :-). Anyway pretty much out of the blue my current eye consultant proactively asked
Hi, I asked my previous eye consultant if they would fill a form out to say I was visually impaired. It was a few years ago but they refused which was frustrating because I wanted to apply for a disabled railcard :-). Anyway pretty much out of the blue my current eye consultant proactively asked
Blindbatuk
in
Glaucoma UK
1 month ago
MPN and vision problems
Hi all I'd like to ask if anyone has experienced vision problems associated with their MPN? I have ET (Jak2+) and in recent months have had frequent/daily disturbances in the periphery (bottom right) of my vision. It's different from the 'classic' scintillating scotoma (visual migraine/migraine with
Hi all I'd like to ask if anyone has experienced vision problems associated with their MPN? I have ET (Jak2+) and in recent months have had frequent/daily disturbances in the periphery (bottom right) of my vision. It's different from the 'classic' scintillating scotoma (visual migraine/migraine with
junebuggy
in
MPN Voice
1 month ago
Pegasys skin?
Has anyone else had their skin turn into rough, dry, chicken skin on large parts of their bodies after taking Pegasys? Mine started out with itchiness, and now the skin itself is weird. I've used tons of lotion, including Sarna. I have also taken Beta Alanine orally. Problem is growing worse. Any solutions
Has anyone else had their skin turn into rough, dry, chicken skin on large parts of their bodies after taking Pegasys? Mine started out with itchiness, and now the skin itself is weird. I've used tons of lotion, including Sarna. I have also taken Beta Alanine orally. Problem is growing worse. Any solutions
dogsandhorses
in
MPN Voice
1 month ago
Ikervis (Cyclosporin)
Has anyone been prescribed this for dry eye/corneal issues? I was referred to an iritis clinic and prescribed this drop mid June x 2 drops in right eye per day. Though I don't see out of my right, vision in my left was pretty good up till then (had cataract op in left last year) but it started getting
Has anyone been prescribed this for dry eye/corneal issues? I was referred to an iritis clinic and prescribed this drop mid June x 2 drops in right eye per day. Though I don't see out of my right, vision in my left was pretty good up till then (had cataract op in left last year) but it started getting
whitedog
in
Glaucoma UK
1 month ago
UTI experience with Imbruvica
hello, when I was on Imbruvica I had many UTI. This is side effects of Imbruvica. I asked my doctor to switch me for another medication and now they m on Venclecta. This is even worse. I do not have UTI anymore , but I’m already sick for Ramsay Hunt this is like Bels Pasley. All these pills for CLL have
hello, when I was on Imbruvica I had many UTI. This is side effects of Imbruvica. I asked my doctor to switch me for another medication and now they m on Venclecta. This is even worse. I do not have UTI anymore , but I’m already sick for Ramsay Hunt this is like Bels Pasley. All these pills for CLL have
farber
in
CLL Support
1 month ago
Eye symptoms
Has any one been told they have early onset macular degeneration? Also weak retina? I was given a Amsler grid last eye test/scan and told to go straight to A & E if lines go curved. I have had a bad cellulitis infection in 2021 which I had a cyst also, antibiotics and drops eventually sorted this.
Has any one been told they have early onset macular degeneration? Also weak retina? I was given a Amsler grid last eye test/scan and told to go straight to A & E if lines go curved. I have had a bad cellulitis infection in 2021 which I had a cyst also, antibiotics and drops eventually sorted this.
Missyjasper
in
Behçet's UK
1 month ago
Dry Mouth and Methotrexate
I started s.c. Methotrexate a couple of months ago and am increasingly developing a dry mouth. This aggravates my erosive oral lichen planus. Is this common with Methotrexate??
I started s.c. Methotrexate a couple of months ago and am increasingly developing a dry mouth. This aggravates my erosive oral lichen planus. Is this common with Methotrexate??
13Lab
in
NRAS
1 month ago
Squint surgery
Hi all today i had surgery for a squint in my left eye which is my weak eye. I have wet AMD in both eyes and have Eyelea injections. Also have ocular hypertension in both eyes and use drops. What fun! I have been given Maxitrol drops 4 x times daily for 2 week then 2 x times daily for the following
Hi all today i had surgery for a squint in my left eye which is my weak eye. I have wet AMD in both eyes and have Eyelea injections. Also have ocular hypertension in both eyes and use drops. What fun! I have been given Maxitrol drops 4 x times daily for 2 week then 2 x times daily for the following
EthelPledge94
in
Macular Society
1 month ago
what to do now ?
Hi All Confused what to do next ? These are my results after 6 weeks on new regime Bloods taken 8am and 12 hours after last dose of T3 125 mcg Tirosint 2.5 mcg T3 I’m feeling much warmer and brain fog is better although I do feel a little angst and teary at times ? Energy is much better.
Hi All Confused what to do next ? These are my results after 6 weeks on new regime Bloods taken 8am and 12 hours after last dose of T3 125 mcg Tirosint 2.5 mcg T3 I’m feeling much warmer and brain fog is better although I do feel a little angst and teary at times ? Energy is much better.
joskie
in
Thyroid UK
2 months ago
Tuesday's Tips
from Dr. Jones's book [u][i]
The Definitive Guide for Patients With Primary Biliary Cholangitis....
[/i][/u] One of the most common other auto immune diseases associated with PBC is Sjogrens Syndrome. With having the salivary and tear glands are affected, the patient experiences lack of tears,
from Dr. Jones's book [u][i]
The Definitive Guide for Patients With Primary Biliary Cholangitis....
[/i][/u] One of the most common other auto immune diseases associated with PBC is Sjogrens Syndrome. With having the salivary and tear glands are affected, the patient experiences lack of tears,
DonnaBoll
Administrator
in
PBC Foundation
2 months ago
DVLA Esterman Test - trial test?
Hi I am awful at hospital visual field tests.. I get anxious, my eyes dry up, I worry if I blink I’ll miss a light, I’m hesitant to click on lower light blips (I’m overly cautious.. don’t know why!). I fret I didn’t press the buzzer when I should have (I.e. was that a dim light or not?) then miss the
Hi I am awful at hospital visual field tests.. I get anxious, my eyes dry up, I worry if I blink I’ll miss a light, I’m hesitant to click on lower light blips (I’m overly cautious.. don’t know why!). I fret I didn’t press the buzzer when I should have (I.e. was that a dim light or not?) then miss the
Blindbatuk
in
Glaucoma UK
2 months ago
Euthyroid Thyroid Eye Disease
I have had problems with one eye for 9 months now. Started with gritty feeling, watering eye. Inflammation and baggy eye bags. Then fatty bumps appeared to be coming through above one eye, and one eye ball seems slightly higher than the other, and pushed forward slightly. Then came the double vision
I have had problems with one eye for 9 months now. Started with gritty feeling, watering eye. Inflammation and baggy eye bags. Then fatty bumps appeared to be coming through above one eye, and one eye ball seems slightly higher than the other, and pushed forward slightly. Then came the double vision
Agh2001
in
Thyroid UK
2 months ago
Trabeculectomy failed … 5 bleb needlings 3 in last 6 weeks . Ophthalmic surgeon recommends aqueous flow shunt very soon.
i have aggressive open angle glaucoma in both eyes .An emergency trab was performed March 23 after sudden vision loss and very high IOP . July 23 Jan 24 bleb needlings .Feb24 steroid induced cataract occluded the vision IOP 26 .March 24 cataract removed and further bleb needling and mitomycin C .
i have aggressive open angle glaucoma in both eyes .An emergency trab was performed March 23 after sudden vision loss and very high IOP . July 23 Jan 24 bleb needlings .Feb24 steroid induced cataract occluded the vision IOP 26 .March 24 cataract removed and further bleb needling and mitomycin C .
Alfiwestie
in
Glaucoma UK
2 months ago
Dry Eye / Irritated
Hello, I had aqueous shunts over a year ago, my eyes always feel really tight. It’s hard to explain. I think my bleb is rubbing on my under eye lid slightly. Anyway, ive got the thleoz drops from the GP as I use that many a month, they don’t seem to touch it. The only drops that I felt worked was
Hello, I had aqueous shunts over a year ago, my eyes always feel really tight. It’s hard to explain. I think my bleb is rubbing on my under eye lid slightly. Anyway, ive got the thleoz drops from the GP as I use that many a month, they don’t seem to touch it. The only drops that I felt worked was
Bec8891
in
Glaucoma UK
2 months ago
saliva and drooling
50m from India diagnosed 2 years back. On pramipax 1:5mg daily, last 3-4 months producing lots of saliva impacting my speech also.would like to know if anyone else has same experience and how to reduce this drooling; it’s really embarrassing
50m from India diagnosed 2 years back. On pramipax 1:5mg daily, last 3-4 months producing lots of saliva impacting my speech also.would like to know if anyone else has same experience and how to reduce this drooling; it’s really embarrassing
Iambest
in
Cure Parkinson's
2 months ago
Itchy eye 3 months post Trabeculectomy
Hello, I’m in my 12th week post op, everything went well, my eye is healed with stable pressure of 8. Last week I has a loose stitch removed after they put me back on steroids for 3 days. Even before that I started to experience sudden very itchy eye just around spot where the bleb is, also on the skin
Hello, I’m in my 12th week post op, everything went well, my eye is healed with stable pressure of 8. Last week I has a loose stitch removed after they put me back on steroids for 3 days. Even before that I started to experience sudden very itchy eye just around spot where the bleb is, also on the skin
Fellowsufferer1
in
Glaucoma UK
2 months ago
Malignant Glaucoma
My official diagnosis is "Malignant glaucoma following macular hole surgery". After two laser treatments I had cataract surgery. The following day my pressure in the right eye went to 60. Later that day I lost the sight in my right eye. The macular hole surgery took place on 6th February. The
My official diagnosis is "Malignant glaucoma following macular hole surgery". After two laser treatments I had cataract surgery. The following day my pressure in the right eye went to 60. Later that day I lost the sight in my right eye. The macular hole surgery took place on 6th February. The
Birdie25
in
Glaucoma UK
2 months ago
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