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Thyroid Dysfunction and PD
So I thought I'd cross-search some of my health challenges and whadyaknow: https://academic.oup.com/cei/article/208/3/372/6578682. Shut your mush and take your Ldopa, though I'm non-responsive. Doc, I'm photophobic, can't open my eyes in the morning ALO, blepharospasm...Read it's predictive years before
So I thought I'd cross-search some of my health challenges and whadyaknow: https://academic.oup.com/cei/article/208/3/372/6578682. Shut your mush and take your Ldopa, though I'm non-responsive. Doc, I'm photophobic, can't open my eyes in the morning ALO, blepharospasm...Read it's predictive years before
Dabaa
in
Cure Parkinson's
7 hours ago
Keeping Pegasys injections cool and monitoring temp
Hi, I have recently been diagnosed with Erdheim-Chester Disease after being treated for many years for an MPN, (ET) I have started on Pegasys Interferon and will be travelling by plane soon (yay) and am looking for advice to keep the injections cool. Does anyone use a fridge (or similar) thermometer
Hi, I have recently been diagnosed with Erdheim-Chester Disease after being treated for many years for an MPN, (ET) I have started on Pegasys Interferon and will be travelling by plane soon (yay) and am looking for advice to keep the injections cool. Does anyone use a fridge (or similar) thermometer
LeoTravels
in
MPN Voice
3 days ago
Airport travel with Injections
Can some experienced travellers who use Pegasys give me some advice please. I am travelling this week from the UK to Mexico, and have bought a Disoncare insulin cooler to keep my Pegasys syringes in whilst travelling. I will keep this in my Hand Luggage, but I’m not sure what to do with the needle
Can some experienced travellers who use Pegasys give me some advice please. I am travelling this week from the UK to Mexico, and have bought a Disoncare insulin cooler to keep my Pegasys syringes in whilst travelling. I will keep this in my Hand Luggage, but I’m not sure what to do with the needle
swimswam
in
MPN Voice
23 days ago
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combined therapy help
Hi a little advise if possible: normally levo 125mg and thybon 5mg. A new endo has taken me off thybon to try and work out if I have diabetes inspidius (water balance issues). I think I was slightly too hyper but 3 weeks later and I feel terrible - weight gain, constipation, no apetite. I don’t think
Hi a little advise if possible: normally levo 125mg and thybon 5mg. A new endo has taken me off thybon to try and work out if I have diabetes inspidius (water balance issues). I think I was slightly too hyper but 3 weeks later and I feel terrible - weight gain, constipation, no apetite. I don’t think
DancerLisboa
in
Thyroid UK
25 days ago
Frequent styes
I know that this is not a serious symptom, but I was just wondering if anyone else keeps getting styes. I seem to get rid of one and then a week later get another. My eyes are very sore.I do all the recommended things with eye hygiene, changing makeup regularly and heat pad on my lids. Could this be
I know that this is not a serious symptom, but I was just wondering if anyone else keeps getting styes. I seem to get rid of one and then a week later get another. My eyes are very sore.I do all the recommended things with eye hygiene, changing makeup regularly and heat pad on my lids. Could this be
Pippapot
in
MPN Voice
30 days ago
Travelling with interferon/pegasys
Hi , I have just recently started on the pegasys weekly injections . I am travelling to Greece and wonder if anyone can recomend the best way to keep the medication at the correct temperature whilst flying and travelling. Is there a chargeable medication box which I could charge using a battery pack
Hi , I have just recently started on the pegasys weekly injections . I am travelling to Greece and wonder if anyone can recomend the best way to keep the medication at the correct temperature whilst flying and travelling. Is there a chargeable medication box which I could charge using a battery pack
Sunnyhunny
in
MPN Voice
2 months ago
Interferon and the liver
question to all my MPN people on here who are taking pegasys or besremi, how do you manage elevated liver enzymes? Do they cycle up and down? Is there anything we can do to bring them down? What is acceptable to y’all? My hematologist says not to worry until they hit 2-300.. My blood numbers actually
question to all my MPN people on here who are taking pegasys or besremi, how do you manage elevated liver enzymes? Do they cycle up and down? Is there anything we can do to bring them down? What is acceptable to y’all? My hematologist says not to worry until they hit 2-300.. My blood numbers actually
dbus1417
in
MPN Voice
2 months ago
Pegasys side effects
I was switched from 500 Hydroxyurea/day to 90mg Pegasys every two weeks. The pain in hips and thighs is substantial - headache also, but not as bothersome as the muscle pain. Has anyone else experience this on Pegasys. Also, has anyone tried CoQ10 for muscle pain and has it work? Thanks
I was switched from 500 Hydroxyurea/day to 90mg Pegasys every two weeks. The pain in hips and thighs is substantial - headache also, but not as bothersome as the muscle pain. Has anyone else experience this on Pegasys. Also, has anyone tried CoQ10 for muscle pain and has it work? Thanks
Dusty777
in
MPN Voice
2 months ago
First Injection of Pegasys
I FINALLY got approved for Pegasys, and am to pick it up at the pharmacy by Wednesday. My question is does the first injection happen in the Drs. office, or at home?? Were you given physical instructions for how to give the injection? I have written instructions that were sent to me with the approval
I FINALLY got approved for Pegasys, and am to pick it up at the pharmacy by Wednesday. My question is does the first injection happen in the Drs. office, or at home?? Were you given physical instructions for how to give the injection? I have written instructions that were sent to me with the approval
dogsandhorses
in
MPN Voice
2 months ago
When on a weekly dose of Pegasys is it ok to occasionally alter the day you inject?
Hi everyone, I’m about to try Pegasys in a few weeks time on a weekly dose of 45. If I get any unpleasant side effects I wondered if occasionally it’s ok to put back the usual day of injecting by 24 hours if I had something special on the day of the injection. I forgot to ask my haematologist at my appointment
Hi everyone, I’m about to try Pegasys in a few weeks time on a weekly dose of 45. If I get any unpleasant side effects I wondered if occasionally it’s ok to put back the usual day of injecting by 24 hours if I had something special on the day of the injection. I forgot to ask my haematologist at my appointment
Na56
in
MPN Voice
3 months ago
Has anyone gone from Pegasys to Besremi?
Hi all, I am a 65 year old woman in the US with ET. My hematologist has had me on Pegasys for 2 years now, starting with 45 mcg, then 90 mcg injected once a week. Originally my platelets were in the high 400's and have crept up even with the injections and are now at 610. He had me go up to 135 mcg
Hi all, I am a 65 year old woman in the US with ET. My hematologist has had me on Pegasys for 2 years now, starting with 45 mcg, then 90 mcg injected once a week. Originally my platelets were in the high 400's and have crept up even with the injections and are now at 610. He had me go up to 135 mcg
ET625
in
MPN Voice
4 months ago
Selegiline side effects
Hi All. Due to drug shortages we've been unable to get rasagiline and had to swap to selegiline. Since the swap mum has had lots of unusual bleeding and the GP thinks it may be a side effect of the selegiline. Just wondered if anyone else has had similar problems and if so how did you resolve things?
Hi All. Due to drug shortages we've been unable to get rasagiline and had to swap to selegiline. Since the swap mum has had lots of unusual bleeding and the GP thinks it may be a side effect of the selegiline. Just wondered if anyone else has had similar problems and if so how did you resolve things?
Joluu
in
PSP Association
4 months ago
unknown
I have been dealing with a skin condition for almost 3 years. I have seen other posts like mine. One person was even trying to get on a talk show. I too have been dismissed by health providers. I have had one person mention Reactive perforating collagenosis (RPC) Reactive perforating collagenosis (RPC
I have been dealing with a skin condition for almost 3 years. I have seen other posts like mine. One person was even trying to get on a talk show. I too have been dismissed by health providers. I have had one person mention Reactive perforating collagenosis (RPC) Reactive perforating collagenosis (RPC
Mystery20
in
MY SKIN
4 months ago
Sinus and eye infection
Are there any other options in your experiences with
eye
infections
?
Are there any other options in your experiences with
eye
infections
?
Eyak1971
in
Kidney Transplant
10 months ago
Pegasys for MF transitioning from hydroxycarbamide
My darling wife, had her appointment today, and her blood is well below par her Hgb is 82 hematocrit 0.27, platelets 213 which is good, white cells 45. The hematologist was talking about introducing pegasys interferon injections, after her 3 bags of red cells and a ferinject. She is worried about losing
My darling wife, had her appointment today, and her blood is well below par her Hgb is 82 hematocrit 0.27, platelets 213 which is good, white cells 45. The hematologist was talking about introducing pegasys interferon injections, after her 3 bags of red cells and a ferinject. She is worried about losing
jointpain
in
MPN Voice
4 months ago
Pegasys is applying for formal approval in MPN treatment
Dear friends, I came across a EMA document recently and found that Pegasys is applying for indication extension to PV and ET. It provides, on page 53: “Grouped application consisting of: Extension of indication to include treatment of Polycythaemia Vera (PV) and Essential thrombocytopenia (ET) for
Dear friends, I came across a EMA document recently and found that Pegasys is applying for indication extension to PV and ET. It provides, on page 53: “Grouped application consisting of: Extension of indication to include treatment of Polycythaemia Vera (PV) and Essential thrombocytopenia (ET) for
TimothyHLuff
in
MPN Voice
5 months ago
Starting Pegasys soon
Hi all and merry belated Christmas So… chemo…. I was diagnosed with ET about a year ago and finally found an MPN specialist in Montreal after a few months with a hemo who, unfortunately, knew very little about ET. I should be starting Pegasys sometime in January and I have a few questions :
Hi all and merry belated Christmas So… chemo…. I was diagnosed with ET about a year ago and finally found an MPN specialist in Montreal after a few months with a hemo who, unfortunately, knew very little about ET. I should be starting Pegasys sometime in January and I have a few questions :
IsabelleHo
in
MPN Voice
5 months ago
Glaucoma after transplant
Within that time I have had gout and
eye
infections
which included the use of steroids for inflammation. One of these responses to steroid use has been steroid induced glaucoma. Presently I am on 2 eye drops, lanaprost and rhopressa.
Within that time I have had gout and
eye
infections
which included the use of steroids for inflammation. One of these responses to steroid use has been steroid induced glaucoma. Presently I am on 2 eye drops, lanaprost and rhopressa.
Eyak1971
in
Kidney Transplant
2 months ago
Sinemet Plus 25mg/100mg tablets Side effects?
My brother takes Sinemet plus 25mg/100mg tablets - One and a half tablets at 8am, 11am, 2pm, 5pm and 8pm. Half Sinemet CR 25mg/100mg tablets - one taken at bedtime. I have noticed after taking Sinemet plus he is unable to get out of chair or bed for up to an hour, dizziness and sleepiness. His vision
My brother takes Sinemet plus 25mg/100mg tablets - One and a half tablets at 8am, 11am, 2pm, 5pm and 8pm. Half Sinemet CR 25mg/100mg tablets - one taken at bedtime. I have noticed after taking Sinemet plus he is unable to get out of chair or bed for up to an hour, dizziness and sleepiness. His vision
Sarah106
in
Cure Parkinson's
6 months ago
sjogens?
I have post PV Myelofibrosis. When I was dx with PV I took Pegasys from April 22 @ 45mg then 60mg then 90mg fortnightly. (On Jakavi since August 23) So took Pegasys for about 16 months After a couple of months on Pegasys I started to experience close vision problems which could not be corrected with
I have post PV Myelofibrosis. When I was dx with PV I took Pegasys from April 22 @ 45mg then 60mg then 90mg fortnightly. (On Jakavi since August 23) So took Pegasys for about 16 months After a couple of months on Pegasys I started to experience close vision problems which could not be corrected with
Yanico
in
MPN Voice
6 months ago
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