Hi
Hope everyone is well. I had my first Interferon injection Monday after stopping the Hydroxy. Felt fine on Monday, bit lightheaded on Tuesday and a headache. The light headed feeling has gone but the headache hasn't. I have been taking pain killers, the headache goes for a couple of hours but comes back. Is this normal please?
In my experience that's normal for Interferon, but please talk to your haematologist about it in case it's something else.
Thanks Otterfield.
I had a streak of migraines after first starting Besremi. I have suffered from migraines since I was a teenager, but not 5 days straight. I switched migraine medication and they stopped.
I had headaches when I first started with interferon. I found massage was hugely beneficial to me. This was probably a combination of the stress of my MF progression and the new meds. I am tolerating interferon much better now and am up to a 90mg dose per week. Have a discussion with your mpn nurse or consultant about what is best for you . Take care. Penny
hi the advice I was given was take paracetamol and go straight to bed.
I felt ill and flu like for at least two days. When is your next jab? If the headache persists I think you need to notify your clinic. This could be temporary and lessen with each jab. You should be closely monitored when starting Oeg so plenty of opportunity to discuss with your team.
We are all different. I really hope your body can cope with Peg because I’m amazing on it.
Hi I felt fine the day of the jab, it was the following day and subsequent days. Next jab is Monday.
Are you being monitored? I had to have blood tests every week. Have you told clinic about the headaches? Let’s hope that Monday they will be less or not at all. My fingers are crossed for you xx
Hi I have blood tests Friday week. Thank you,
After I switched from HydroxyUrea to Pegasys I had flu like symptoms, including headaches, nausea and aching, particularly in my legs, for the first several months. Gradually the symptoms lessened. Now, several years later, I don't feel much different after injection most weeks but occasionally still get a bit of aching or headache. Much less than initially.
Ditto what plum27 said if you are taking Pegasys interferon
Headache is one of the dehydration issues with Peg. For me, dramatically upping my intake of water, for several days either side of injecting prevented the headaches, the dry eyes, dry mouth and dry/sore throat. Either prophylactically, or at any hint of fluey issues, really high strength vitamin C capsules worked for me. At least 3 or 4 C1000 a day, and increased to one an hour until symptoms go away. Of course copious helpings of really good quality organic produce with, ideally zero food miles is an even better source of C, which is rapidly depleted from produce during transport. You may notice I am quite fanatical about nutrition. In fact I became vegan upon diagnosis of MPN 3½ years ago.
For me, the only other side effect, apart from getting my platelets down of course, was the way Peg quietly and insidiously messed with my head. Not depression, more like an apathy.
On or off Peg, I continue to have chronic fatigue type symptoms. That could be the MPN or just because I'm old.
After 18 months on Peg, however, I decided to take a break from Peg. It has taken nearly six months but I have my mojo back and am very happy with life.
Platelets have of course been creeping up and we are due to review the situation in a few weeks.
interesting that your mojo came back. I just put it down to old age (67)
Well, after my hip replacement a year ago I soon felt 10 years younger and I feel I've lost another 10 since stopping Peg. So that now leaves me six years younger than you! I've been so busy these past few months. But, aa I said, I still get tremendously fatigued. xdx
What dose did you get told to do . I had horrendous headaches in weekly 45 peg interferon. It was a reaction to it . I tried for 6 weeks it did not improve. I spoke with MPN Claire Harrison who took me off it for a few weeks .
The headaches went. She then suggested starting on 30 doseage monthly for body to get used to it. I am fine no side effects or headaches now. I am sticking to 45 monthly now .
I inject mornings & drink plenty & excercise that gets it through the system better than injecting at night when no chance to drink fluids . Julia .
can I ask you what sort of changes to your counts did 45mcg a month make
yes I went from 590 to 300 gradually. I vary because had lot of inflammation from a sports injury last year & ongoing ops but stay around 400 to 500 . I do have lots of excercise & water & changed my food intake knocking out fatty foods & sugars & dairy made a difference to me & no aching bones 👍
Hi They have given me 90mg weekly. Is this a high dose, because i have no idea?
Yes far too high to start on . It should be 45 . Unfortunately Haemotology Drs have little ideas on our drug hence I am glad I got hold of Professor Harrison the MPN expert at Guys who says we should not be suffering headaches . She changed me immediate to 45 monthly. Headaches are your body telling you it’s too strong.
It’s got to be a low & slow dose until your body accepts it . I am now under Professor Harrison who advises my Haemotology . However I would have taken myself off high doses as it was obvious to me how I felt that it was too strong. However that was my old nursing profession experience kicking in .
Do not put up with headaches she told me . It can be avoided .
Great drug once dose managed. I am a year into mine & still experimenting with dose very slowly. 45 is fine 👍 Unfortunately Haemotology seem to want quick platelets fix not slow to have quality of healthy patient . Julia
Thanks for this. If i feel as bad next week i shall ask at my next consultant appt the following week. Maybe they put me on that dose because my platelets are still around 700. But you are absolutely correct about quick platelet fix.
Mine were 590 & I hover at 500 & feel fine 👍
Hi,
Headache was bad when I started. It was definitely dehydration.
I thought I was drinking enough but worked out I had to drink a lot more & since then headaches have subsided. They’ve not gone completely but are easily manageable.
Thank you for all the advice, i thought i was drinking plenty 2 litres a day but perhaps i need more.
I found that around 8 pints is a minimum for me on & after injection days. More than double what you’re currently having.
I guess it’s different for each individual but it’s definitely worth trying to increase as it really worked for me.
If i drank eight pints i would be spending the day in the bathroom, i am already spending enough time there. And what do you do if you go out, must be constantly looking for toilets.
Unfortunately, the answer is yes, I do need the loo more & always factor that in wherever I go. For me, I feel it’s worth it to feel better.
A nurse who undertakes blood tests told me I ought to drink 2 and a half litres of water a day!
could it be withdrawal effects from hydroxy?
Honestly, i have no idea. This disease is like a mine field, so much to try to understand. I have no idea what is causing what or if it could be something totally unrelated. You never get looked at as a whole person.....just a platelet. The bits of me that aren't hurting feel better now i am off the hydroxy.
I hope it all settles down for you. Headaches are horrible. Do you mind me asking what time of day you take your injection?
I have only had one, and that was in the morning at the hospital.
I only ask because if you take it in the day you can drink lots of water but I have just seen your posts saying you drink plenty anyway. After my first injection the next day I felt like I had a hangover but that soon disappeared after a couple of injections with increased water intake. Hope it resolves for you
Hi Everyone, I started my interferon about 5 weeks, I am on 45 weekly.So far I have had no side effects.
I do drink a 1000ml of lemon water on an empty stomach when I get up followed an hour latter with 1000 ml of celery juice. Plus I have a very physical job. I do believe this is helping me. I have had one blood test since I started with a drop in platelet count, let's see if is consistent with my next test in couple of weeks time.
I had terrible, persistent headaches on Besremi and had to stop and switch back to Jakafi.
Hi Arnoldthecat,
When I was given my pegasys I was instructed by my MPN specialist to take a Tylenol Arthritis pill ( it is 600units instead of 400 units of Tylenol and therefore lasts longer) at needle time in the evening and another one upon waking the day after and again later that day if needed.
Great advice in the beginning of this journey!!
I really only did this for the first few months. You will adapt your routine and as your body adjusts to the meds. I would also recommend taking the jab after supper and heading to bed early in the beginning. The more you can sleep away that hazy headache the better.
The headache phase moved into 1 night of insomnia for me after a few months. I adjusted my jab day to a Wednesday night so I could sleep or not sleep on the weekend when I was off. That phase lasted a few months also. Insomnia hit 3 nights after the jab.
I still take the jab in the evening but after about 6 months my body had adjusted to most issues very well. I have the PV / pegasys itch and it has nothing to do with water. After 18 months it is still there sometimes. I have adjusted the materials I wear, the lotions, my water levels and antihistamines.
Good luck! I just remember thinking one day a few months after starting on pegasys that hey I felt so normal today! Shortly after that I felt like that everyday. 🎉
I also suggest talking to the drugs before, during and after. It is a wonderful way to reinforce the positive into this new experience especially if you are afraid of needles. A great shot of positive energy and hope into your thinking pattern. 🍻❤️
Thanks for the advice. Yes, it would be nice to have a day of feeling normal, i certainly did not feel normal the whole time i was on the hydroxy.
I will add that I had stubborn blood and started on 90mcg / week as my dose. After4 months I moved to 135 mcg for 4 weeks and then 180mcg for 4 weeks. That higher dose really kicked in and moved the numbers.
Pegasys can be used light and slow or stronger and bolder. It all depends on your blood reaction. Only after 6 months and a climbing dose did my platelets start dropping and no more phlebotomy.
Best of health to you 🍻😎
I am also in Canada where my only options for treatment were phlebotomy, HU or pegasys. No Besremi here.
I have very few side effects on Peg but if I do (headache, fatigue) it usually happens two days after injection. I drink water all the time but have had to up my intake even more (and yes - I know where all the bathrooms are :-)) - I also take ibuprofen before the injection and the day after as well. I started way too high - at 180mcg/every 2 weeks and am now on 90mcg/2 weeks and tolerating it well (and importantly it has brought my platelets and WBCs back into line)...
I am on my 3rd shot and I have had headache & flu like symptoms off and on from the beginning. This must be some powerful stuff! Also each injection leaves me with bruises at the injection site.
2nd dose of interferon 
First dose of Interferon 
Pegasus interferon injection 
