Search
Search
About
Log in
Join
Experiences with
Wind-eze
Posts
Communities
4,832 public posts
Filter results
Pegasys - possibly closer to slowing progression than anything else?
Hopefully this is not an irresponsible header since may raise false hopes, especially for those who can not tolerate Pegasys. However the quote is from a highly respected MPN specialist today. I saw him about 18 months ago and asked, if you were me, would you start Pegasys (I was coping on venesections
Hopefully this is not an irresponsible header since may raise false hopes, especially for those who can not tolerate Pegasys. However the quote is from a highly respected MPN specialist today. I saw him about 18 months ago and asked, if you were me, would you start Pegasys (I was coping on venesections
Paul123456
in
MPN Voice
5 years ago
freaking out
Okay guys, I think I am actually scared to the bone right now. I woke up with the slight ringing ears and other than that I was good. My sore throat is gone which idk why I had it. Now I went to the store and the lights were very flourecent. I do have floaters in my eyes fyi. Anyways, my vision started
Okay guys, I think I am actually scared to the bone right now. I woke up with the slight ringing ears and other than that I was good. My sore throat is gone which idk why I had it. Now I went to the store and the lights were very flourecent. I do have floaters in my eyes fyi. Anyways, my vision started
janeths466
in
Anxiety Support
5 years ago
Pegasys, does it work for you ?
Hi ET peeps. I am on this forum from my son who was diagnosed with ET after a stroke at age 10 . he has been treated with Hydroxyurea untill last year when we switched to Ruxolitnib. The later has been less successful at getting his Platelets down below 1,000. I have noticed lately a lot of people
Hi ET peeps. I am on this forum from my son who was diagnosed with ET after a stroke at age 10 . he has been treated with Hydroxyurea untill last year when we switched to Ruxolitnib. The later has been less successful at getting his Platelets down below 1,000. I have noticed lately a lot of people
Louforjack
in
MPN Voice
5 years ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Anticoagulant and small haemorrhage on optical disc.
Last week I went to the opticians after having a new, rather prominent, floater in the left eye. The optometrist noticed a small haemorrhage on the disc. This, she said, could be vitreous detachment (which is a normal part of the ageing process), a sign of incipient glaucoma (although she said the disc
Last week I went to the opticians after having a new, rather prominent, floater in the left eye. The optometrist noticed a small haemorrhage on the disc. This, she said, could be vitreous detachment (which is a normal part of the ageing process), a sign of incipient glaucoma (although she said the disc
Hidden
in
AF Association
5 years ago
No more eye injections with an implantable pump!
Coming soon! No more eye injections! My retinal specialist told me a Mini Drug Pump for Ophthalmic Use is going to be approved for Lucentis. (Like an insulin pump device) I'm not sure if Eylea will be offered as well. He said it should be available in a year or so. Has anyone else heard of this? I
Coming soon! No more eye injections! My retinal specialist told me a Mini Drug Pump for Ophthalmic Use is going to be approved for Lucentis. (Like an insulin pump device) I'm not sure if Eylea will be offered as well. He said it should be available in a year or so. Has anyone else heard of this? I
RandyM
in
Macular Society
5 years ago
My Iritis flared on Humira and MTX
Hurts like the dickens. I am using drops too. Wondering if it is because I stopped taking prednisone a week agao? Seems weird that with all the meds I am on, I am still getting these flares. I am scared. I do not want to lose my eye.
Hurts like the dickens. I am using drops too. Wondering if it is because I stopped taking prednisone a week agao? Seems weird that with all the meds I am on, I am still getting these flares. I am scared. I do not want to lose my eye.
OneLove2019
in
LUPUS UK
5 years ago
Graves and eye lid surgery
Hello I’m looking for anyone who has Graves’ disease and knows anything about the subsequent eye surgery. I was diagnosed with Graves’ disease in February this year. It also affects my eyes, with them being a bit starey. Not bulgy but definitely changed appearance. My eyelids have retracted which is
Hello I’m looking for anyone who has Graves’ disease and knows anything about the subsequent eye surgery. I was diagnosed with Graves’ disease in February this year. It also affects my eyes, with them being a bit starey. Not bulgy but definitely changed appearance. My eyelids have retracted which is
Yorkie2019
in
Thyroid UK
5 years ago
Uniform
For years I used to pipe on an honor guard. I was asked by the local VFW to pipe a military funeral Wednesday; the first time I've piped for anyone outside of family since I was injured, left the service, and got sick. As uniforms left too long unworn in closets have a tendency to shrink, I found myself
For years I used to pipe on an honor guard. I was asked by the local VFW to pipe a military funeral Wednesday; the first time I've piped for anyone outside of family since I was injured, left the service, and got sick. As uniforms left too long unworn in closets have a tendency to shrink, I found myself
Hidden
in
Heal My PTSD
5 years ago
"Dry skin" and Pegasys
Many people here report that Pegasys gives them dry skin. No doubt this is often true because Pegasys has a GIGANTIC range of side-effects. But I wanted to call attention to something else Pegasys does which could be confused with dry skin. Pegasys is a recombinant alpha interferon (IFN-α) and as
Many people here report that Pegasys gives them dry skin. No doubt this is often true because Pegasys has a GIGANTIC range of side-effects. But I wanted to call attention to something else Pegasys does which could be confused with dry skin. Pegasys is a recombinant alpha interferon (IFN-α) and as
pnArt
in
MPN Voice
5 years ago
Graves and eye surgery
Hello I’m looking for anyone who has Graves’ disease and knows anything about the subsequent eye surgery. I was diagnosed with Graves’ disease in February this year. It also affects my eyes, with them being a bit starey. Not bulgy but definitely appear “wide”. I have seen an eye specialist and am on
Hello I’m looking for anyone who has Graves’ disease and knows anything about the subsequent eye surgery. I was diagnosed with Graves’ disease in February this year. It also affects my eyes, with them being a bit starey. Not bulgy but definitely appear “wide”. I have seen an eye specialist and am on
Hidden
in
Thyroid UK
5 years ago
Tapering
Since my first post I have been following all recent posts with interest and would be grateful for further advice. After initial dose of Pred, 20 mgs daily for 2 weeks, then 15 mgs daily for 2 weeks, my GP advised me to reduce to 14 mg daily for the 5th week, then 13 mg daily for a week and so on, reducing
Since my first post I have been following all recent posts with interest and would be grateful for further advice. After initial dose of Pred, 20 mgs daily for 2 weeks, then 15 mgs daily for 2 weeks, my GP advised me to reduce to 14 mg daily for the 5th week, then 13 mg daily for a week and so on, reducing
Billswife
in
PMRGCAuk
5 years ago
What are the odds?
I've been dealing with late stage PSP with my husband who has had the misfortune to have not one but two rare diseases! When he was born he had Hirschprung's disease and had most of his bowel removed (wore a bag for a year until they reattached his plumbing) So as you can imagine he has been plagued
I've been dealing with late stage PSP with my husband who has had the misfortune to have not one but two rare diseases! When he was born he had Hirschprung's disease and had most of his bowel removed (wore a bag for a year until they reattached his plumbing) So as you can imagine he has been plagued
Jkhakh2
in
PSP Association
5 years ago
Sicca Symptoms
Hi there everyone, I recently went to a rheumatologist because my GP suspected sjogrens syndrome, as far as I know the blood tests are not back yet but from what I have read they aren't 100% for diagnosing sjogrens anyway. The reason for my post, I had the letter back from their department and it says
Hi there everyone, I recently went to a rheumatologist because my GP suspected sjogrens syndrome, as far as I know the blood tests are not back yet but from what I have read they aren't 100% for diagnosing sjogrens anyway. The reason for my post, I had the letter back from their department and it says
vicky_24
in
The Australian Sjögren's Syndrome Association
5 years ago
Blepharitis
Any one on here suffer from Blepharitis? What started off as gritty sore eyes has now become Blepharitis. Any comments as to how you deal with it welcome. I am using the baby shampoo to clean my eyes, and awaiting eye heat mask to arrive, the clinitas drops worked for my eyes, but not for the surrounding
Any one on here suffer from Blepharitis? What started off as gritty sore eyes has now become Blepharitis. Any comments as to how you deal with it welcome. I am using the baby shampoo to clean my eyes, and awaiting eye heat mask to arrive, the clinitas drops worked for my eyes, but not for the surrounding
Callabag64
in
NRAS
5 years ago
Anyone doing Euro Lupus protocol? (Low dose cyclophosphamide)
Hello to everyone out there! I’m new to the group - seeking advice from those who have undergone the Euro Lupus Protocol? This is cytoxan (cyclophosphamide) treatments by IV every other week. I understand infusion treatment takes approximately 6 hrs. Sounds very looong to me! What does one do all
Hello to everyone out there! I’m new to the group - seeking advice from those who have undergone the Euro Lupus Protocol? This is cytoxan (cyclophosphamide) treatments by IV every other week. I understand infusion treatment takes approximately 6 hrs. Sounds very looong to me! What does one do all
Tired-in-Toronto
in
LUPUS UK
5 years ago
? BFP
Hi All, After two failed rounds of ISCI we had some pretty good improvement in sperm count but motility still wasn't up to scratch. We thought we'd give it one last proper try last month prior to my husbands renal transplant as we aren't sure if the sperm will take a nose dive. I had really mild spotting
Hi All, After two failed rounds of ISCI we had some pretty good improvement in sperm count but motility still wasn't up to scratch. We thought we'd give it one last proper try last month prior to my husbands renal transplant as we aren't sure if the sperm will take a nose dive. I had really mild spotting
Hidden
in
Fertility Network UK
5 years ago
Disabled badge
I am looking into applying for a disabled badge. I have only just turned 20 and I have systemic Lupus. I was diagnosed in 2014. I was wondering does that make me eligible for it? What are they looking for? I can walk but I have fatigue constantly, but to me i just see it as an everyday thing, alot of
I am looking into applying for a disabled badge. I have only just turned 20 and I have systemic Lupus. I was diagnosed in 2014. I was wondering does that make me eligible for it? What are they looking for? I can walk but I have fatigue constantly, but to me i just see it as an everyday thing, alot of
Ash2394
in
LUPUS UK
5 years ago
B12 deficiency : tongue, mouth (and apologies !)
I did say that I would show what the lovely ENT consultant described as [i]"clearly B12 deficiency"[/i] - and also said that I was doing absolutely the right thing by self-injecting every other day, that it would take time and that I must be persistent. He also agreed with me that salivary gland infection
I did say that I would show what the lovely ENT consultant described as [i]"clearly B12 deficiency"[/i] - and also said that I was doing absolutely the right thing by self-injecting every other day, that it would take time and that I must be persistent. He also agreed with me that salivary gland infection
Cherylclaire
Forum Support
in
Pernicious Anaemia Society
5 years ago
Raction after Pegasys injection
I inject 135 mg Pegasys every 3 weeks. Even though I feel very tired I find it hard to get to sleep (and stay asleep) the night of the injection. Does anyone else feel really jangly and agitated? It feels like I’ve drunk far too much coffee.
I inject 135 mg Pegasys every 3 weeks. Even though I feel very tired I find it hard to get to sleep (and stay asleep) the night of the injection. Does anyone else feel really jangly and agitated? It feels like I’ve drunk far too much coffee.
Marossi
in
MPN Voice
5 years ago
Eye problems is it PMR?
Hi, I recently read a post from koalajane to do with dry eyes and PMR. I have woken up many times with red eyes, my vision is blurred and I sometimes have a bit of watery pus. I'd be interested to know if PMR or steroids may be causing this. After around 10 minutes my eyes begin to clear. Thank you
Hi, I recently read a post from koalajane to do with dry eyes and PMR. I have woken up many times with red eyes, my vision is blurred and I sometimes have a bit of watery pus. I'd be interested to know if PMR or steroids may be causing this. After around 10 minutes my eyes begin to clear. Thank you
Hidden
in
PMRGCAuk
5 years ago
1
...
99
100
60
70
80
90
100
Filter results
Clear filters
Posted in
All communities
Macular Society
555 results
Thyroid UK
478 results
PMRGCAuk
383 results
View top 10 communities
Sort by
Most Relevant
Newest