Hi,I dx 2011 with Et jak2. Treated with 500mg HU and aspirin until experiencing Amouris fugax (TIA). So then clopidogrel. Fatigue has always been my worst symptom. I changed to peg interferon in Oct 23 dose 45mg every fortnight. I have very dry skin and a rash on my arms,legs, chest and we're iv scratched sores that don't heal. I had an appointment with my CNS nurse and a hematologist pharmacist yesterday who agree it is a side effect from the peg injections and have suggested using an emoilant whilst showering and plenty of moisturiser afterwards and to record if any changes and how it effects me during the fortnightly period, whether is eases near the end of the time period. She also suggested I post here to see if anyone else is suffering the same and how they are dealing with it. I am to email her back in a couple of weeks and if things are not improving they will put there heads together with my consultant, to come up with a plan. So the question is, is anyone else having the same side effects.
Thanks Gill
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With the IFNs (Pegasys/Besremi) - I have experienced broad areas of itching, usually on my back, and rashes that occasionally pop up on limbs. The rashes usually present with small raised red spots that do not itch. I take a daily dose of cetirizine, which controls the itching and seems to help prevent to rashes. If I find a rash bothersome, I treat with Eucrisa ointment. Eucrisa is a PDE4 inhibitor which I also use to treat eczema. It works quite well.
Based on my experience with IFN side effects and managing eczema, prevention is the best way to intervene. The dermatologist recommended not using soaps or anything with perfumes/scents. In stead I use a body cleanser with ceramides (CeraVe) to shower. I also maintain a healthy skin moisture barrier in affected areas with a ceramide cream twice per day (CeraVe Cream). I also use perfume/dye free laundry products to reduce exposure to anything that may be a skin trigger.
Wishing you success finding an approach that works for you.
I’m on Besremi. I had a rash in the first weeks after starting. The rash was more wide spread. Neck, ears, chest, inner elbow. I immediately took a light antihistamine. It went away after two days and no more antihistamine. That happened after the first few injections. Then stopped.
I am on an antiinflammatory diet (autoimmune Paleo). This works wonders and all my earlier problems like eczema, histamine, intolerance, depression, fatty liver, oral plaque, chronic nasal infections, chronic calls and bronchitis dry distention, memory problems and others went away in 6 months. Even my Hashimoto thyroiditis reduced by 60%.
we eat as much organic as possible, and there are absolutely no chemicals in the house or on our bodies. I buy organic shampoo in liter bottles and use it for hair, body hands. I wash my dishes with vinegar with 1/10 shampoo in it. I wash our clothes with wild chestnuts that fall off the trees in the fall. I cut them up, dry them, and soak them in water overnight in order to get soap for my laundry.
moisturizing my skin I use coconut oil with some soothing essential oils in it if necessary Olive Oil works wonderful also but one can smell a bit like a Greek salad! 😂 no perfumes no air fresheners no softeners no candies. 25 kg melted off my body although I eat about 600 cal daily more than before. Super important, clean, water, clean air. It’s a process that took a year and a half of training myself at 54. This is my lifestyle for six years now, and many friends have followed suit whether they are plagued with an illness or not all feel better, and are happier.
It’s something to think about.
the interferons activate the immune system therefore I work against that by taking away anything else that activates the immune system . My quality of life is many levels above what it used to be before my diagnosis. 😃
Thank you for so much information and lots of food for thought . I certainly at times feel overwhelmed by fatigue without the thoughts that I can do anything to change that . This certainly makes me think there is much to be done .L
I have some solutions for fatigue because I have had it also. 100 mg of a really good biological form of coenzyme Q 10. Another thing that is fabulous is acetyl L carnitine. You can take anywhere from 500 mg per capsule up to six capsules a day. I started on to a day one in the morning, one in the afternoon to see how it is. It helped me a lot and I was able to wash my bathroom! The next day, I took another one in the morning, and was able to clean my kitchen. This usually wears off after 4/5 hrs. I’ve been started taking two in the morning and two in the afternoon. I was able to instantly go on long walks and do much heavier work at home also in the garden.
I was taking for a day for about 18 months and I was able to build up muscle again and I had a life I’ve been reduced to three a day and I’m just taking two. If I go on a long difficult hike, I take two or three at a time.
if you need a steady amount of energy, then you take them, dispersed throughout the day, but not after 6 PM or else you might have trouble sleeping.
the L-carnitine is only for the body, but the acetyl L-carnitine also gives energy to the brain. Studies have shown that it helps people with Alzheimer’s especially after 2 to 3 years.
what the ALC does is help your cells take in nutrients much faster and better. The CoQ10 helps the mitochondria, which are the batteries of every single cells in our body work better to burn food. So you see these are simple and natural ways of boosting energy and help people with chronic fatigue. That of course, is every person with cancer. 🙂
Hi Can I ask what type of shampoo you are using I started Hydroxy end of last year and my hair doesn’t feel good nor does my skin . Do you use sun cream when outdoors Heather
Hi Heather,I use all natural products, but my hair has changed, I used to suffer with greasy hair, but it's definitely dry now and my skin was dry. I use a factor 50 on my skin.
Thank you I will have to look into best products I used to have fine hair but had a lot of but definitely thinner I turned 61 last December do could be an age thing too , thanks for replying I have a lot to learn just diagnosed last December
From birth I had unbelievable amounts of hair, but also fine. When I got 19 silver fillings as a 14 year old in 1980, I lost about half my hair in the following two years. I did not know why my braids had gotten so thin. I was also an emotional and physical wreck at that time. I had horrific hallucinations, and no one could tell me why
Years passing,, my hair got thicker, but not that much. Pregnant at 38 years old I was losing my hair in masses. I had to cut it to shoulder length. Month 6 of the pregnancy to 9 months after the baby was born, I didn’t lose a single hair and you hair was growing.
my ET cause hair loss, starting at 47. Time of diagnosis I was 52. Then I started fixing up my body and going organic in every possible way. Also taking supplements and bone broth from organic cow bones that I simmer for 24 hours. Now at the age of 59 I have a beautifully full head of long silver striped hair. 😃
thank you Anag for explaining all that you do to live a clean healthy lifestyle. We eat very healthily lots of fresh fish and chicken and also make home made soups . It is the shampoo , body cream and sun cream I will have to work on I will look up shampoo you use on internet . Thank you for taking the time to reply in great detail. Wishing you a nice weekend Heather
are use shampoos from the German company Santé. I live in Austria. Since I’ve been using this shampoo, I no longer have dandruff or have to use conditioner at all. I have hair to the middle of my back and as a Greek lots of it! It’s really wonderful for me. I buy it in 950 mL bottles it’s about €13 per bottle and sometimes when it’s on sale about 10 or 11€. In bulk, It’s actually cheaper than all the other popular, shampoos on the market, which are only available in 200 or 250 mL bottles!
I am not on hydroxyurea, and for that reason, I don’t have that extra susceptibility to skin cancer. I only use sunblock on the first few days of vacation unless I am out during the day indirect sunshine. I usually stay in the shade under trees, or under a roof. Being under an umbrella. Doesn’t usually protect us very well from the rays!
once again, be in Greek, we go swimming in the morning until 10 AM and then again after 5 PM. It is the tourists that travel to the southern countries who spend the whole day on the beaches and cause true problems for their skin, and also pollute the waters and they are through using most sunscreens that are full of chemicals as well.
Apparently Olive Oil has a 20 factor protection and coconut oil up to 25 factor. Once my skin has tanned, I only use those. 🙂 Anag
I will preface my reply to say I am on 500 MG of hydroxurea and 81mg asprin , once a week 1000 MG of hydroxurea due to my platelets are still between 600,000 and 800,000. They are trying to get theifm down further. I have just a few really dry patches and the lower parts of my legs. I have been using lotions with dead sea minerals and that has taken care of my issues if I apply it daily. Hope all goes well with you. Sorry about the lengthy text. Norm
Thanks for all the advice. I have already made a lot of changes to my diet and lifestyle back in 2016. Vegan diet, all natural products used at home, but I can see there is more I can do.
Hi Brian, yes there is a lot of info and advice, that's why this site is so good. I have always struggled with fatigue before the hydroxy. So part of ET not my meds. But I think I am starting to feel a little better on the peg interferon. I am in the process of finding my baseline and then slowly introducing some activities to see how my fatigue reacts. Take it slow I am on 45mg fortnightly. Good luck
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