Experiences with

Eye infections

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.

I had suggested this was a possible option for pts losing access to PEG. Thanks to member zvinkovic who has direct knowledge and posted: "I thought Roferon is discontinued? Because I was on Roferon and only got Pegasys because Roferon was discontinued" Here is the summary I wrote in that thread.

I noted in that post a thought of using a non pegylated IFN as a temporary measure as Pegasys becomes unavailable. It may not be so out-of-the-box thinking. This reference shows its use, and provides a dose schedule and relative dosing vs PEG. If you are out of viable options, (cannot access Bes or

I constantly get eye infections and bacterial skin infections and currently have an access on my arm that is extremely painful. I have antibiotics from the doctor, but had to go to A&E yesterday as it was getting worse.

In some recent threads this has come up in context of the PEG shortage and there is some confusion. For those interested here are some thoughts on MPN interferon versions. -- There are a many different types of IFNs, with various Greek letters and type classes. For MPNs only two among these many

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

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

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%

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

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

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

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,

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

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

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

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

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

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

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

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