I have ET with JAK2 mutation. With the shortage of Pegylated Interferon my Haematologist stopped giving me any medication except for Clopidogrel. My last injection was 15 October, 2024. I administered this two weeks after I would normally have it, i.e. 4 weeks, so this was at 6 weeks. I did this as I was going on an important course over three weekends in October and November and thought that by going the extra two weeks for the final injection it would help me get through the course. However, I became extremely hot, both during the day and at night. Sleeping was very difficult and life was very difficult. This lasted about two weeks before reducing in frequency and levels of heat. Generally my body heat is higher than usual and I am not wearing winter sweaters etc. and can still get hot day or night, though these are a lot less. I find it a bit too coincidental that the incredible heat came on after my final injection and I am only thankful that it is subsiding, though not gone. Two weeks ago I saw one of the doctors on the Haematology team who said that the heat would be to do with my low Oestrogen. Other than Oestrogen all bloods were normal with my platelets at 284. I am seeing an Endocrinologist as my parathyroid was damaged when my thyroid was removed so I went to see him. He said that, as I am over 70 years of age, he would not start giving me Oestrogen. He also said that the heat is probably due to the pathways in my brain becoming accustomed to not having treatment for the ET. So, with the Haematology team saying that it is to do with Endocrinology and Endocrinology saying that it is Haematology I've not got very far. My own thinking is that patients have not been forced to come off treatment in such a way before and so there may be insufficient research about the outcomes of doing so. Is anyone else experiencing such difficulties with heat after coming off Interferon?
Symptoms after stopping Interferon?: I have ET... - MPN Voice
Symptoms after stopping Interferon?
I don’t know the answer to what is causing the heat, if you didn’t have that symptom when on Peg then it’s unlikely to be something to do with Estrogen.? Peg can suppress thyroid, so maybe coming off Peg increased thyroid and caused heat.?
Re not taking estrogen because you are 70, I would get a second or third opinion on that, plenty women over 70 take it. Topical is safest, avoid oral
I had to come off of Besremi (INF) after almost 2 years due to developing chronic hives and an increase in TSH (I’ve been hypothyroid for decades). Heat was not a symptom for me / but we are all different and I am cold most of the time. Definitely agree you should get a second opinion. Good luck!
I would definitely get a second or third opinion on what is going on. There are a number of explanations which include what you have listed (PEG withdrawal, low estrogen, parathyroid issues). I would not want to guess at the answer; however your suspicions about PEG withdrawal are very reasonable given the timing. If the increased body heat continues to fade away, then the timing may be your best clue.
Meanwhile, suggest taking nothing for granted. You need for your care team to collaborate and not foist you off on another department. You will have to be the driver to make this happen, serving as your own case manager. Seeking a second opinion from a MPN Specialist would be a good place to start.
Wishing you success moving forward.
I had a range of difficult symptoms during withdrawal from Peg as I spread out injections to every 4 to 6 to 8 weeks then went with HU. Worst of it lasted about 6 months and included night sweats, hearing trouble, brain fog, gastro intestinal issues, trouble sleeping and neuropathy. After a few years all but the neuropathy and brain fog has calmed down almost completely and the brain fog is a little better. I agree your endocrinlogist is probably in a better position to help but hematologists should be involved. Personally I ended up with an autoimmune problem thats still being fully diagnosed but seems to be related to Lupus that can also cause blood clots, its called antiphospholipid syndrome. So I'm taking a whole aspirin along with my HU daily now. Personally I think I turned the corner last year on my symptoms after going on an anti-candida diet for about 6 weeks. My gut was a wreck after 2 years of anagrelide then 4 on peg. Now eating fruits, lean proteins and high fiber carbs. Sugar is the enemy.
hi Anita,
I am like you and over 70 but started having the most horrendous hot flushes much more severe than during menopause. ( I have PV Jak2+. ) I needed to carry a fan with me everywhere as these could occur many times a day not just at night. A friend told me she was using Estrogel and this worked for her. My GP would not prescribe for me until I had clearance from my cardiologist (I’ve had a heart attack). That obstacle overcome I started using the gel and within 2 weeks the flushes disappeared. As I live in Australia the summers and humidity had made the flushes so much worse but we are in the middle of summer now (38 today) and I have been flush free !! So so happy. Perhaps it would work for you. I must admit I was very sceptical but the results speak for themselves.
Best of luck .
Rosie
Thank you all so much for responding. You've all been helpful and so supportive. Thank you too for your generosity in taking the time to get back to me. I wish you all a good 2025.
ask them for HRT patches. Irrelevant of age. I am 70 & still use them & Peg Interferon. Although the interferon has been reduced due to shortage my sweating etc starts immediately if I have no HRT patch. Julia UK.
I eas on pegaysys and have been transferred onto Besremi. Ask your haematologist to put you on that. Its terrible that they have just stopped treatment. Good luck
Thank you. I had a consultation on 20 December and will be having a phone call consultation in 4 weeks time. As my bloods are normal I think Haematology are less interested in putting my on Besremi. However, the Dr I talk to in 4 weeks may have a different perspective. Thankfully I have support from a Functional Therapist and nutritionist and I think she is helping. Thank you all once again. I really value the support I have been receiving.
I can fully relate..I've been on interferon now for a few years, I've found that when I'm due to inject, at the end of the week, now 2 weeks... I'm hotter than normal, as soon as I I jet, I cool down to a more normal temp... it's not menopause, or anything like that, I had a full hysterectomy in 1995 and I'm way past the symptoms of any hormonal changes...it's definitely when I'm due to inject.... we've often laughed about it ... my husband always knows when I'm due to inject
These posts are really interesting. I injected every 4 weeks but when I mentioned heat to the Haematology team there was little interest. I have been off Interferon now for a while and, whilst the immense heat has subsided I still get hot and am still wearing layers so that I can remove a layer when the heat is too much. Not sure if anyone is researching this heat now that so many of us have been forced to take a break due to the shortage. I have a phone call in about 4 weeks with a Haematology Dr so hopefully I will get a different response than from the one I spoke with at the clinic. Once again, thank you for responding everyone.
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