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Sjorgren syndrome
Following months of repeated
eye
infections
, I have now been diagnosed with dry eyes, and drops certainly seem to be helping. However I came across an article on Sjorgren syndrome,. The list of symptoms include dry mouth, IBS, dry eyes, dry skin, joint problems, all of which I suffer from.
Following months of repeated
eye
infections
, I have now been diagnosed with dry eyes, and drops certainly seem to be helping. However I came across an article on Sjorgren syndrome,. The list of symptoms include dry mouth, IBS, dry eyes, dry skin, joint problems, all of which I suffer from.
Pippapot
in
MPN Voice
4 months ago
Starting Pegasys
hi all, I’m about to start the next stage of my treatment journey, 45mg Pegasys fortnightly. I’ve picked up the meds and just waiting for my remaining blood tests to come back before I start. I’ll update this thread over the next 12 months with various updates from how the first injection went and
hi all, I’m about to start the next stage of my treatment journey, 45mg Pegasys fortnightly. I’ve picked up the meds and just waiting for my remaining blood tests to come back before I start. I’ll update this thread over the next 12 months with various updates from how the first injection went and
Steve_Essex
in
MPN Voice
2 months ago
Tilt Table Test
Well, on Thursday I had a Tilt Table test and it was positive. My blood pressure rose to 185/110 before taking a nosedive to 80/54 with me on the verge of passing out. My nurse then stopped the test and reclined the table. I am pretty certain that I did not escape Sjogrens with my year on Pegasys. I
Well, on Thursday I had a Tilt Table test and it was positive. My blood pressure rose to 185/110 before taking a nosedive to 80/54 with me on the verge of passing out. My nurse then stopped the test and reclined the table. I am pretty certain that I did not escape Sjogrens with my year on Pegasys. I
Wewo01
in
MPN Voice
2 months ago
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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
2 months 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
2 months ago
beta alanine dose/timings
this has been suggested by the clinic nurse as not finding anti histamines to be helpful. My husband (Jak 2 pos, pv) has been tolerating Pegasys 45 mcg really well. Feels better than he had in ages. However after three weeks, he has become quite itchy (manageable during day) but it is waking him at night
this has been suggested by the clinic nurse as not finding anti histamines to be helpful. My husband (Jak 2 pos, pv) has been tolerating Pegasys 45 mcg really well. Feels better than he had in ages. However after three weeks, he has become quite itchy (manageable during day) but it is waking him at night
Scaredalone
in
MPN Voice
3 months ago
b 1 Therapy
Hello fellow readers. My name is Sakina. I am soo confused about the b1 therapy. I have been taking b1 sublingual 100 mg three times in a week under the tongue for quite a while l, but have noticed no difference. So now I am taking 100mgs of Thiamine Mononitrate. Which is better Thiamine Hydrochloride
Hello fellow readers. My name is Sakina. I am soo confused about the b1 therapy. I have been taking b1 sublingual 100 mg three times in a week under the tongue for quite a while l, but have noticed no difference. So now I am taking 100mgs of Thiamine Mononitrate. Which is better Thiamine Hydrochloride
Springbreak
in
Cure Parkinson's
4 months ago
Eye Supplement Concern
Eye doctor highly recommended taking supplement Preservision. I cleared with hematology re peginterferon but after buying it, researching ingredients and checking interactions am concerned. Twice a day ingredients: C = 250 mg, E = 90 mg, zinc= 40 mg, copper = 1 mg, Lutein = 5 mg. Except Lutein,
Eye doctor highly recommended taking supplement Preservision. I cleared with hematology re peginterferon but after buying it, researching ingredients and checking interactions am concerned. Twice a day ingredients: C = 250 mg, E = 90 mg, zinc= 40 mg, copper = 1 mg, Lutein = 5 mg. Except Lutein,
Mishie14
in
MPN Voice
4 months ago
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
4 months 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
4 months 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
5 months ago
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
5 months 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
5 months 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
6 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
6 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
6 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
6 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
7 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
8 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
8 months ago
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