Hi Rose, I am taking both Interferon Alfa and Hydroxycarbamide. No problem with that except when I reached 17 capsules a week of the Hydroxycarbamide and then my white blood cells went too low. I was then given Interferon Alfa to inject 90mg every other week. Again I was fine apart from strange dreams. My platelet count then rose after a year on both drugs and the Interferon was doubled. I injected each week for six weeks and felt drugged and confused for most of the following day. My platelets came down and the Interferon was dropped to every other week as before , that was five weeks ago. 11 days ago the vision in one eye became blurred. I have blot haemorrhages on my retina which should clear in time. A rare side effect of Interferon is bleeding in the retina.
It is a good and effective drug but be aware of the many side effects listed. All the best Gail
Hi Gail
Many thanks for sharing your experience.
It would seem that different people have different side effects âŚthis is probably true with any medication.
Appreciate you getting in touch. Thanks 
Probably not helpful, but I started on HC when diagnosed in 2013 and have never had any side effects at all apart from brittle nails. I was 69 when diagnosed and for the next few years joked that I had the lifestyle of someone in their 50s, apart from the birthdays starting with a 7. Unfortunately, prostate cancer isnât as amenable.
@DickM you really have and are going through a double whammy arenât you. Look after yourself and please keep letting us know how you are.
@Rose
Some info from my point of view, we are all different, so not sure how you would react to either medication
I was diagnosed with ET, 22 years ago, and subsequently the JAK2 mutation. (once they knew about it, and could test)
I was initially on 75mg Asprin, but was told once my platelets were over 1,000, or I passed age 60, I would have to go on to other treatments
My platelets were around 900-950, on just asprin, for 17 years
The reason for the either one or the other, is that both have an increased risk of clotting.
Eventually I did wait a bit, and went on to Hydroxycarbamide at age 62, a few years ago, I take 2x500mg weekdays, and 1x500mg weekends, and my platelets are now 350-400.
I initially felt sick, and had to take anti-sickness tablets, but after about 6 weeks, I could come off the anti-sickness.
I canât sit in the sun for more than 10 minutes or so, or I come up in rashes.
and my hair is thinner - but that could be down to age!
I donât feel tired at all.
At 60, I had to go onto interferon for a short time, before I had surgery, the sickness was dreadful, and I felt tired all the time.
âŚedited to add - I had migraines with the kaleidoscope lights, for as long as I could remember - when I went on the asprin, they went away
Hi Heather
Thank you so much for sharing your experience in such detail. It has been very helpful and much appreciated.
Hi
I have ET also . Just 12 months now. Interesting my first consultation it was advised the same medication and I said no , as I was feeling well. Then on the 2nd consultation they said I donât need the medication !! So I have been on one Asprin daily and I feel good at the moment. Like everyone else itâs your decision at the end of the day. Iâm 70 now and feel I would not want the side affects of the drugs. I want to enjoy my life whilst I can. 
Sound good to me @Macymae123 yes, we all have choices.
You enjoy yourself and please keep posting
Hello @Rose! You seem to have the same reaction as me in being uncertain about taking Hydroxycarbamide. I am still trying to think my way through the whole situation. my platelet count has increased since my last appointment. 770 to 800, so I am thinking I will have to bite the bullet. I am thinking I will wait till after Christmas when I will have finished my term of teaching singing. I am worried about the possibility of mouth ulcers as a side effect as it would make singing/and teaching singing uncomfortable.
But I may be worrying about something that will not happen.
I took a list of comments and questions to my last appointment. I thought that may be preparation enough, but next time I will prepare questions more succinctly, and will think through possible answers, because this time I was a bit like a rabbit in headlights, and didnât feel empowered to take the Haematologist on. He made two negative comments, which actually indicated he hadnât understood my situation, but I didnât stand up for myself. Being behind masks doesnât help! Not so easy to read the face!
I donât have, or at least know of, a âteamâ assigned to me, to whom I could ask questions, or discuss things. I will need to find out if there is one. I think I would find it very helpful at this stage.
Thank you @Rose For your post, and I wish you all the very best for your appointment.
Hi @Modesigns I have had to learn to be big and brave over the years and realise that the consultant is just another human being like me.
What did the consultant say when you said that you were concerned about getting mouth ulcers?
If you do not feel that the consultant had understood your situation then keep clarifying until you feel he has and ask those follow up questions too.
It might be worth asking if you have a CNS (Clinical Nurse Specialist) allocated to you as I have found they are really useful to clarify anything that you are not sure about or your concern. I also found my GP was useful too.
Another trick is to think that you have all your forum family behind you to support you when you have your appointment.
It is also worth saying that you will get back to your consultant if you do not feel happy agreeing to something there and then.
Please keep posting how you get on and really look after yourself.
Hi there
I had a consultation with a different haematologist at the end of October.
He was very helpful and spent time talking to me about hydroxycarbamide. He said that in his experience most people tolerated it very well with few or even no side effects. He said that I would start on a small dose and would be closely monitored. My platelet count was 630 and has been around this figure for quite some time so it is fairly stable.
He did mention the associated risks with high platelets and he advised that I should consider taking the medication.
My next consultation will be in January and I feel that I have to make a decision then. I donât think I will ever be fully convinced that I should take the medication but I have been procrastinating for so long that I now feel I should say yes!
Good to hear from others in the forum.
@Erica Hi!
I guess you donât know who my consultant is, or where I am, so I guess I can say what happened. It started with my having written why I didnât take the medication, because I was about to look after my grandchildren. His reply that many people are looking after children or grandchildren, and that it wouldnât have been a problem. So basically I shut up! SO silly, as what really happened was I received the news of my condition and the script for my medication on day 1, and had to look after the children from day 2. It was a lot to think about in 24 hours. I was shocked by the capitals CYTOTOXIC on the front of the packet, and thought that if I have to wear gloves, what would it do to my mouth and alimentary tract. I looked at the side effects with the medication, and the 4 pages given me by the haematologist from www.macmillan.orgâŚall of which was too much to take in. I was also concerned that I would be on my own with the children, had to fetch, carry, shop, etcâŚwhich in normal circumstances would be fine, but were I to have had side effects, I would be vulnerable and would have no help. I didnât go into all of that, I tried to keep it simple, but his reaction made me think I am not going to be heard.
As a 74 year old, I ask the question, what IS the best thing to do? A specialist, much, much younger, has no concept that we may not be over the moon about medication that may create more problems than it solves, and that we may need some gentle persuading. While I am feeling well enough to enjoy the prospect of living for a lot longer, I have in reality lived more than my 3 score years and 10, and am not afraid to die.
The consultants answer to the question re mouth ulcers was that it was unlikely to happenâŚthough on the positive side, he did say if there are serious side effects they would change the medication.
My experience when I saw the consultant for Endometrial cancer, both before and after a radical hysterectomy, and removal of lymph nodes, was that she asked my how I felt, and I always felt she was ready to listen.
ATM it is very difficult to get to our GP, and I am not sure if there is a CNS available. I think if there were it would be very helpful.
There is a lot to think through isnât there, whatever our journey, or for whatever reason. I shouldnât have allowed my concerns to be dismissed without answering. I canât control what the consultant says, especially if I perceive it to be negative, but I can reply, and I didnât. I too have to learn to be brave!! Thank you for listening!!
It is your body @Modesigns and at the end of the day it is up to you to consider the pros and cons for you, there are no rights or wrongs, and to make whatever decision feels right to you.
We are here for you whatever you decide, really look after yourself.
Can anyone else share their experiences?
Hi @Rose you have still got a few weeks to consider what you want to do and your decision must be for you, not because you feel you âshouldâ. There are no rights or wrongs, itâs your body
As I said to @Modesigns we are here to support you whatever you decide.
Look after yourself.
Many thanksâŚreally appreciate the support and hearing the experiences of others.
@Erica - today I asked for my first Platelet results from June this year. They were at 735. Appt in September they were 770, and this last November appointment they are at 800. I am coming, probably too slowly, to the realisation that I may have to follow the numbers and go on the medication. Meanwhile have been LOVING the sunshine and the Autumn leaves, and have been walking 2-6 miles most days to at least look after the heart health as much as possible. Today I was quite close to a red kite sitting on fence posts, and flying from one to another, I think it was quite young. Making the most of the sun before I have to cover up, or walk in the shade!! Maybe it is time that helps as we work our way through these difficult decisions.
Oh @Modesigns yes, what a glorious morning it was, the sun and the skies were stunning.
For me it was a perfect temperature for walking (or kicking my way through the leaves) and the autumnal colours are wonderful.
I walk about 5 miles a day with my music playing in my ears.
You were lucky seeing a red kite, I just have a robin that watches me going round and round and I wonder what it is thinking.
When I am out early I usually see quite a young fox, which also watches me and it and the local cats just seem to leave each other alone.
Yes, it is worth just taking your time before making decisions.
The best things in life are free.
I have finally managed to be in contact with the Haematology âTeamâ! What an amazing relief. Everyone I spoke with on my journey to finding who, specifically, I was to contact, was really helpful on the phone. I am still waiting until after Christmas, and after a student informal concert just before Christmas, until I begin Hydroxycarbamide. I now know I have someone to call 24/7 if I meet emergency problems, and have someone from the team to contact if I have non emergency questions. After nearly 3 months the relief to have that available is SO helpful. I discover I should have had contact with âThe Teamâ at the time of being prescribed the ChemoâŚbut all is well that ends (Or should I say begins!?) well!
I now feel much calmer about the whole process!
I am not up to walking as much as you @Erica, but am walking most daysâŚstill loving the bursts of sunshine when they comeâŚand now, in the early evenings as it gets dark, walking around to see who has put up lights compensates somewhat for the early darkness!
Oh @Modesigns the relief comes from your post, I am so pleased for you.
You describe my walks so well and it is not about distance, it is about taking time for yourself, just being with nature, fresh air (and for me being nosey !!) and what is right for you, enjoy.
The best things in life are free.
Good evening @Rammie18 I found this update from 2021 and I am about to start on interferon and I am scared about side effects as I have been on hydroxy for 4 years no problems. How have you found it now after 18 months? Did you get any impact on hair or skin ? Many thanks, Abby