Looking for advice from you all. I’ve lived with diagnosis of PV now for 7 years managing on venesections and aspirin.
Since October I’ve been prescribed peg interferon injections, currently on 90mcg weekly
My question is does anyone have advice re sunshine ?
My heam nurses says no sun especially on injection sites and keep skin covered up. Obviously I wear factor 50 sunscreen anyway in the summer but am feeling sad that I may need to be extreme and stay in the shade or covered up at all times.
what’s people experience and are the risks greater when taking interferon.
Thanks everyone and wishing you a happy Easter.
sanga
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Sanga
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As far as I’m aware, normal sun precautions apply to Peg Interferon.
I’m thinking of moving over to Peg from Hydroxycarbamide and imagined I wouldn’t have to be so stringent about sun protection. But alas, it seems once you’ve been on Hydroxy, you need to continue to keep covered up. Not a bad thing. I’m sure my skin is better for it (and the world is better for having to endure less of my flesh on show:))) ).
I was on Hydroxy & now Peg . Just Factor 50 long sleeve shirt & hat . Unless you already had problems my Haemotology happy as long as careful as always have been during my sailing career of being in outdoor exposed activities 👍
cover up is my moto . Have ET and in hydroxycarbomide . I have developed pre cancerous cells on nose head and have strange marks on arms . Always wear long sleeves and cover head as have thin hair and scalp gets effected by sun .
I have been on Pegasys 7 years. Never heard on any sun restrictions.
There are restrictions for hydroxyurea; e.g. "Hydroxyurea can make your skin more sensitive to the sun. This increases your risk of skin cancer. Avoid the sun if you can. If you can't, be sure to wear protective clothing and apply sunscreen."
My dermatologist looked up Peg interferon on the website she uses which lists all of the possible side effects of a drug. It definitely states that the drug makes one more susceptible to sun exposure and advises caution. The next time I see my doctor I will take a photo of the writeup and post it.
Although most sun damage skin cancer starts 10 to 20 years (or more) before it pops up, I picked up two squamous cell skin cancer spots after 4 years of peg. Unfortunately I was very casual about sun protection until my first spot. Was on valsartan for BP too which like a lot of meds makes skin more sensitive to sun. When I switched to Hydrea from peg I picked up two more squamous cells and even more aktinic keratosis spots, I could tell my skin was extra rough. Just switched to Jakafi a week and a half ago and its packaging talks more about skin cancer than any other med I’ve taken although my skin looks a little better already. Get used to big hats and long sleeve shirts and sunscreen, including on the lips, lower lip especially. Stay in the shade during peak sun too as much as possible.
I haven’t heard anything about interferon and increased risk of skin cancers, but it wouldn’t surprise me if it does. Basically all immunosuppressants have some increased risk. However, sometimes it is chicken and the egg situation as sun exposure is cumulative. Obviously, HU and Jak inhibitors it is well documented and the longer you are on the drug the higher the risk. But I reassure all of my patients on these types of drugs as sooo many increase this risk. Just be cautious, see your dermatologist annually or sooner if you have an issue. Good sun protection is always going to be your best friend. Advice I give everyone.
of course, there are thousands of side-effects, some include skin rashes et cetera. It says nothing about avoiding the Sun. If you do have any skin reaction or redness on the spot of the injection, naturally, you should not exposed to the Sun! That’s common knowledge for any skin problems.
please read the material above, so you can know everything about the medication you’re taking . Also read about eventual nutrient deficiencies that Pegasus and also other drugs that your take me cause.
I am seeing my MPN specialist tomorrow and he will be switching me from HU to Peg. In Ontario, Canada you need to have a very good reason to go on Peg because it is a process to get it covered by our insurance. I am switching because on HU I had many squamous and basil cell skin cancers the latest of which was a large squamous cell on the top of my head that required a large skin graft from my shoulder. He is putting me on Peg specifically because it does not make one sensitive to the sun like HU. I’ve been on HU 16 years. Hope this helps.
Sanga, as a fellow PV sufferer and a NHS user was wondering what triggered your team to put you on this?Hope the treatment goes well with no complications.
It was a combination of things but mainly due to my white blood count rising and platelets being irrational over the previous 12 months as well as my red blood not being maintained by venesections - was needing one every 3 months.
Overall the research shows good results over 5 years for some with PV if you can tolerate it.
So far been on it 6 months plus and I have no symptoms any more other than itchy skin and tiredness. I’ve lived with that for 7 years so hoping it may go too. Manage with tests water and good diet as well as Claritin
Plus I’ve had no venesections and my blood has all reduced to healthy level. Now able to take iron under careful monitoring, to get out of the v v low iron situation which partly causes the fatigue.
I wear Factor 50 on face & body & also spend lots of time in the sun as I sail as a volunteer on a charity ship for disabled . I have just returned from a trip in Carribean for a month working . I wore long sleeve shirts shorts . Swam in the sea but wore a rash vest to protect delicate thinner skin chest etc
My Haemotology are aware & I come back tanned despite my big brimmed hat. I have not been told to stay out of sun on Interferon but to take my normal precautions. I take my syringes with me on trips & inject no problems. Just currently adjusting doses due to my sensitivity . Vitamin D is essential & sunshine best provider. If I did not have sailing in my life it would be horrendous. Hobbies are important as well as fitness . Impossible to be out of the sun & live a normal life unless you wear a burka 🙈
Just take normal precautions & instead of lying out like a brown starfish pick times of the day before 11am and after 3 pm to swim & enjoy your life . But I always wear my hat even swimming if hot climate 👍 Julia .
Whilst I'm reading here that they're are no contraindications for sun I'm on holiday now for the 1st time since being on peg and I'm having the worst reaction to sunlight. I sunbathed for a really short time and 2 days later I'm suffering like a lobster. Having to slather on aloe vera like some type of teenager caught on the beach with no sunscreen in! I've never experienced anything like this before. I think it's down to the peg.
snap...holidayed in Sardinia mid-July and despite slathering myself in Factor 50 and wearing a hat at all times, even in the pool, my face was on fire after the first day. Skin became very dry and scaly all over, it took 5 days for a hardened top layer to come away with very gentle exfoliation. I'm a keen scuba diver and I just can't take the risk out on a boat now without any shade/ protection
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