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Anyone with ET use Besremi?
Pegasys is causing me significant liver enzyme increases. I have high risk ET, CALR-1 and resistant to Hydrea. Pegasys has worked well for past 8 years but now liver can no longer tolerate. Just wondering if anyone else has had this happen and what the change in cytoreductive management strategy was
Pegasys is causing me significant liver enzyme increases. I have high risk ET, CALR-1 and resistant to Hydrea. Pegasys has worked well for past 8 years but now liver can no longer tolerate. Just wondering if anyone else has had this happen and what the change in cytoreductive management strategy was
Mountainbiker12
in
MPN Voice
2 years ago
Flying with flareup of GCA
I have planned a trip to England from the United States to England for several Months now. I am supposed to leave the U.S. on Monday 26th September. Now my right temporal vein has started to protrude and aches. Ihave had an ESR test nd CRP test but both are normal.I have been on a maintenance level of
I have planned a trip to England from the United States to England for several Months now. I am supposed to leave the U.S. on Monday 26th September. Now my right temporal vein has started to protrude and aches. Ihave had an ESR test nd CRP test but both are normal.I have been on a maintenance level of
DeliaGray
in
PMRGCAuk
2 years ago
Trab Positivity
I had a trab 4 weeks ago and a complete rework 1 week later due to very low pressure. It hasnt been easy. I went in high risk as my pressure was 50 so I guess I wasnt going to have an easy ride of it. We are now getting somewhere but Im not there yet. Yesterday a member of my family who I rarely see
I had a trab 4 weeks ago and a complete rework 1 week later due to very low pressure. It hasnt been easy. I went in high risk as my pressure was 50 so I guess I wasnt going to have an easy ride of it. We are now getting somewhere but Im not there yet. Yesterday a member of my family who I rarely see
Beaudidily
in
Glaucoma UK
2 years ago
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Ptosis following Trabeculectomy
I’m on week 8 following my first Trabeculectomy and still have a droopy eyelid (ptosis) - I know this is a very common factor and was expecting it but just wondering (praying) that this will resolve and go back to normal on its own? I think roughly the 3 month point is what I’ve read in terms of full
I’m on week 8 following my first Trabeculectomy and still have a droopy eyelid (ptosis) - I know this is a very common factor and was expecting it but just wondering (praying) that this will resolve and go back to normal on its own? I think roughly the 3 month point is what I’ve read in terms of full
Eyehelp5
in
Glaucoma UK
2 years ago
Ganfort - is it preservative free?
My consultant prescribed Ganfort eye drops because they're supposed to be preservative free and I had been having problems (soreness) with other eye drops. However, I note from the accompanying leaflet that they contain the preservative benzalkonium chloride which is a preservative. Just wondering if
My consultant prescribed Ganfort eye drops because they're supposed to be preservative free and I had been having problems (soreness) with other eye drops. However, I note from the accompanying leaflet that they contain the preservative benzalkonium chloride which is a preservative. Just wondering if
tcpace
in
Glaucoma UK
2 years ago
Finally I have a Sight long distance Reading!!
Hi everyone I, Long story short I recently had cataract surgery in April which was a bodge job that ended up slicing my corneal layer . After 5months into it with still inflammation and pain , constant migraines putting up with constant ghosting and refection . I finally had a positive reading lens
Hi everyone I, Long story short I recently had cataract surgery in April which was a bodge job that ended up slicing my corneal layer . After 5months into it with still inflammation and pain , constant migraines putting up with constant ghosting and refection . I finally had a positive reading lens
KnitSewPurl
in
LUPUS UK
2 years ago
Glaucoma, Migraine, Anxiety & Depression : My Story
Hi. First of all this post is not an advert or a recommendation. It is just my Story and an opportunity for me to share my experiences in the hope that some good will come out of the last two years. My sincere wish is that something in my story will help someone that is reading this. Whether that is
Hi. First of all this post is not an advert or a recommendation. It is just my Story and an opportunity for me to share my experiences in the hope that some good will come out of the last two years. My sincere wish is that something in my story will help someone that is reading this. Whether that is
Royrace
in
Glaucoma UK
2 years ago
GCA Symptoms
Hello, I’m curious of those that have gone blind in one eye, or completely, from GCA…did you have any symptoms? We’re you misdiagnosed? If you had symptom, were they consistent, and present all the time? How long did you have symptoms before going blind? Was your blindness abrupt, or a slow loss of sight
Hello, I’m curious of those that have gone blind in one eye, or completely, from GCA…did you have any symptoms? We’re you misdiagnosed? If you had symptom, were they consistent, and present all the time? How long did you have symptoms before going blind? Was your blindness abrupt, or a slow loss of sight
Newcomer22
in
PMRGCAuk
2 years ago
Azathioprine hydroxychloroquine steroids and dental extraction
Hello lovely people. I am due to have a dental root extraction and are on the above drugs. I am finding it hard to get to see my rheumatologist so in the absence of a GP who understands lupus does anyone know if there is anything that I need to particularly be aware of or do before or after? I am
Hello lovely people. I am due to have a dental root extraction and are on the above drugs. I am finding it hard to get to see my rheumatologist so in the absence of a GP who understands lupus does anyone know if there is anything that I need to particularly be aware of or do before or after? I am
cakerbaker
in
LUPUS UK
2 years ago
Is it GCA or side effect of Prednisone
Has anyone had blurry vision in one eye, no jaw pain, no headaches and eye exam revealed nothing to worry about in regards to GCA. The blurry vision comes and goes. I am tapering down. Started at 60 mg for 1 day in ER due to PMR then 40mg for 2 days and then 20mg for 2 months. Now down to 13mg reducing
Has anyone had blurry vision in one eye, no jaw pain, no headaches and eye exam revealed nothing to worry about in regards to GCA. The blurry vision comes and goes. I am tapering down. Started at 60 mg for 1 day in ER due to PMR then 40mg for 2 days and then 20mg for 2 months. Now down to 13mg reducing
flygirl65
in
PMRGCAuk
2 years ago
Very dry mouth
Since Covid in October 2022 I have had a dry mouth with a sore tongue and sore roof of mouth. I am now thinking it is nothing to do with Covid but maybe related to Mercury thyroxine? I have struggled for years trying to find a brand that agrees with me, ever since the original Eltroxin I by Glaxo disappeared
Since Covid in October 2022 I have had a dry mouth with a sore tongue and sore roof of mouth. I am now thinking it is nothing to do with Covid but maybe related to Mercury thyroxine? I have struggled for years trying to find a brand that agrees with me, ever since the original Eltroxin I by Glaxo disappeared
Goldpurple
in
Thyroid UK
2 years ago
Treadmill pace.
Hi guys. I started couch to 5K a few weeks back and have done weeks 3 and 4 (now 2 runs into week 4) on the treadmill. I set my walking pace between 3.5 - 4 mph and running at 6.5-7.5 mph. I'm managing the runs OK but am bathed in sweat when I get off - am I pushing too hard and likely to struggle with
Hi guys. I started couch to 5K a few weeks back and have done weeks 3 and 4 (now 2 runs into week 4) on the treadmill. I set my walking pace between 3.5 - 4 mph and running at 6.5-7.5 mph. I'm managing the runs OK but am bathed in sweat when I get off - am I pushing too hard and likely to struggle with
Leeg1974
in
Couch to 5K
2 years ago
glaucoma operation
I am having a glaucoma operation on my right eye this week and I’m terrified. I am having it with a local anaesthetic. I could not find anyone who has had it and could put my mind at ease . Is there anyone who has been through this please help me.
I am having a glaucoma operation on my right eye this week and I’m terrified. I am having it with a local anaesthetic. I could not find anyone who has had it and could put my mind at ease . Is there anyone who has been through this please help me.
Maryjane-s
in
Glaucoma UK
2 years ago
Interferons as the First Choice of Cytoreduction in ET and PV
»Interferons are a group of cytokines with immunomodulatory properties and were the first immune therapies used in the treatment of cancers, including hematologic malignancies. Use of standard interferon alfa-2b for MPN treatment has been limited by its difficulty in administration and adverse effect
»Interferons are a group of cytokines with immunomodulatory properties and were the first immune therapies used in the treatment of cancers, including hematologic malignancies. Use of standard interferon alfa-2b for MPN treatment has been limited by its difficulty in administration and adverse effect
Manouche
in
MPN Voice
2 years ago
Tiopex and night vision
I was diagnosed with glaucoma last March and prescribed Tiopex eye drops, one drop in each eye once a day. Since the nights have got darker I notice that my vision is poor when driving at night Yesterday in the cinema I could not read extracts from a notebook when they appeared on a screen - they were
I was diagnosed with glaucoma last March and prescribed Tiopex eye drops, one drop in each eye once a day. Since the nights have got darker I notice that my vision is poor when driving at night Yesterday in the cinema I could not read extracts from a notebook when they appeared on a screen - they were
Eyeworrier
in
Glaucoma UK
2 years ago
EMDR treatment
has anyone tried EMDR treatment for anxiety?
has anyone tried EMDR treatment for anxiety?
Agelesslass
in
Anxiety and Depression Support
2 years ago
Eyelids swollen and TED suspected
My saga continues. I have Hashimotos and have been on 200mg levothyroxine for some years. For the last 2 years I have had eyelid swelling which has now affected my vision. I tried my GP for help but to no avail. This year whilst having an eyetest st Specsavers the optician also tested my field of
My saga continues. I have Hashimotos and have been on 200mg levothyroxine for some years. For the last 2 years I have had eyelid swelling which has now affected my vision. I tried my GP for help but to no avail. This year whilst having an eyetest st Specsavers the optician also tested my field of
A1Amber
in
Thyroid UK
2 years ago
Psp and cataracts.
Hi friends just wanted to ask if anyone has any experience with a loved one who has psp and has has cataracts. At long last my mum got an appointment with a optometrist at the hospital. They said she has cataracts in both eyes and will need to have surgery. The doctor was quite scary telling me the complications
Hi friends just wanted to ask if anyone has any experience with a loved one who has psp and has has cataracts. At long last my mum got an appointment with a optometrist at the hospital. They said she has cataracts in both eyes and will need to have surgery. The doctor was quite scary telling me the complications
Cinderella80
in
PSP Association
2 years ago
Dry eyes
Recently, I had an ANA speckled pattern 1:640. They ran all the little subtests and all came out negative. My eyes are so dry that I was thinking I might have sjogrens. Also, I have bad constipation that I take Linzess for. Optician said when I was getting tested for glasses that my glands were blocked
Recently, I had an ANA speckled pattern 1:640. They ran all the little subtests and all came out negative. My eyes are so dry that I was thinking I might have sjogrens. Also, I have bad constipation that I take Linzess for. Optician said when I was getting tested for glasses that my glands were blocked
Zelda5
in
Thyroid UK
2 years ago
Scalp SLE diagnosed April 2021, conflicting/contradictory medications - any advice?
Hi I've had a biopsy which confirmed SLE for scalp last year in France (where I live).Having suffered health issues due to serious overmedication here before, I was reluctant to start on 400mg of Plaquenil. Got a 2nd opinion in Spain in May2021, who prescribed Diprosone (topical steroid cream) which
Hi I've had a biopsy which confirmed SLE for scalp last year in France (where I live).Having suffered health issues due to serious overmedication here before, I was reluctant to start on 400mg of Plaquenil. Got a 2nd opinion in Spain in May2021, who prescribed Diprosone (topical steroid cream) which
carorueil
in
LUPUS UK
2 years ago
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