Taking Interferon for the first time - when do you take and why do you take at that time ?

[Jocko]

I have ET CALR + and am due to see a specialist on Sept 11th, I am 54 and work.

Last time I saw him (in June) he said I would probably be starting Pegasys Interferon on my next visit.

I understand this is a weekly injection and there may be side effects (feeling a bit crap etc) and therefore my question is...

Do you inject on Friday night, feel a bit grim over the weekend but are OK to go to work on Monday, or

Do you inject Monday night and feel a bit grim at work.

I need to work therefore I don't want to have too much time off in case it draws undue attention to me.

I would be interested in when you inject and why ?

I want to be clued up before I see the doctor again so any help is greatly appreciated.

Thanks Jocko

[AndyT]

Hi Jocko,

I inject on a Sunday morning and am lucky not to get the flu like symptoms that some have experienced.

My haem started me on 45mcg to see how that went and as I was OK then moved to the full 90mcg thereafter. Maybe worth trying that when you start.

Some people take paracetamol in case of flu like symptoms but I was advised to try without so I had a true picture - based on that I've never needed it.

Good luck!

Andy

[Jocko in reply to AndyT]

Thanks Andy, once you start taking on a certain day is it easy enough to change days or does it have to be the same day/time every week ?

[AndyT in reply to Jocko]

It makes sense to stick to the same day if you can, to keep the interval between injections constant. I now only inject every 4 weeks and sometimes flip between Saturday and Sunday as I can't see that 1 day either way out of 28 will make much difference..!

Like you I work full time, so I prefer to inject at the weekend just in case I get any reaction - so far I've been lucky though I'm currently experimenting with missing a dose as after 2 years I'm getting very tired and a bit down, which could be a longer term side effect of Peg - I'm very keen to stay with it though, as it's worked very well to control my blood counts.

[Jocko in reply to AndyT]

Thanks again Andy, sounds to me like you're doing OK.

[AndyT in reply to Jocko]

Thanks Jocko - Pegasys has been great for me for the last 22 months - just a slight blip now with fatigue and low moods but I'm hoping the break for 8 weeks and trialling lower dosage will put me back on track. My haem is very supportive and up for experimenting to see what works best for me - I certainly don't want to give up on it. I'll be intrigued to see how much my counts rebound after 8 weeks - hoping they may have stabilised..! 🤞

[Jocko in reply to AndyT]

Good luck Andy, I be really interested to see how you are getting on, Would you be able to give an update on this thread. All the best Jocko.

[francesb]

Hi, I've been on Pegasys 8 months. At first I had barely any side effects, starting at 45 then up to 90 and could certainly have worked. Unfortunately because I have a complicated diagnosis (Jak 2 pos plus 2 TET mutations) I have high white cell count and high platelets and it wasn't working. My consultant kept upping the dose until eventually I was on 270 which really affected me very badly for at least 4 days each week and I couldn't do anything I felt so ill. It brought my platelets right down but didn't touch the white cells. Due to the toxicity we are now gradually reducing the dose and I'm hoping it may yet impact on the white cells. So I'd say, if it works for you at 45 or 90 it's brilliant with minimal side effects in my experience, I was just unlucky because of my complicated blood! Good luck, I hope it does the job for you, best wishes, Frances.

[Jocko in reply to francesb]

Thanks Frances that's unfortunate about the complications but you sound positive and that's really important. Good luck.

[Cecilie]

Hi Jocko, I take my Pegasys injection on a Wednesday normally, as I don't want to ruin my weekend in case I feel ill. If I get any flu-like symptoms on the Thursday, I just take paracetamol. Still at work without any problems. I really only felt bad for the first few weeks, now I hardly get any symptoms at all. Good luck, hope it works for you.

Cecilie

[Jocko in reply to Cecilie]

Thanks Cecile that sounds like a good approach. Have you always done the injection on a Wednesday or did you experiment until you found a day that suited you best ?

[Cecilie in reply to Jocko]

It was a coincidence really, but it suits me so I stuck with it. It clashed once with travelling abroad, so I changed the day that week. I took the day off work the day after my very first injection, since I didn't know how I would react, and I am glad I did. Since then it hasn't stopped me from getting to work or going to the gym or anything like that.

[Jocko in reply to Cecilie]

Excellent sounds like it's working well.

I currently cycle to work so I'm hoping it won't stop me doing that.

[Bridie123]

Hi Jocko, none of your replies mention and perhaps you already know, that pegasys should not be taken if you have any history of depression. I have ET, CALR and take hydroxy. Hope it all goes well for you. ☺

[Jocko in reply to Bridie123]

Thanks Bridie I did not know about the depression thing. Fortunately I don't have any history of depression. Funnily enough when I first saw the doctor I thought he would have prescribed hydroxy but he wants to try Pegasys and to be honest I was a bit frightened of taking hydroxy long term. I have been on aspirin for approx 4 years which was prescribed without knowing I had ET and the aspirin has done a good job of masking the ET effects. So right now I feel great but my blood counts are high so I am told I need to start something to bring the counts down.

[Bridie123 in reply to Jocko]

Maybe your doctor thinks it will fit better with your working life, I do hope so. I started taking hydroxy the end of last summer and by December I went off sick and yesterday I handed in my notice! It was only a very part time job, but I was working in the heat and blood diseases do not like the heat.It was the job that brought it to the fore. Good or bad I can't decide. 😐

[Jocko in reply to Bridie123]

Thanks again Bridie, good luck and I hope it works out.

[Disney71]

Hi Jocko

I am about to start PEG Interferon this weekend. I am 45 and I run my own business. I am JAK2 + and have been taking Hydrox (1.5g) with Aspirin (75mg) daily since May 25th. All my blood counts have returned to within the normal levels now and my consultant is keen to start gradually introducing PEG Interferon and removing Hydrox. I am starting on 90 mcg once a week and my consultant suggested i inject my first does on Friday evening.

I'm feeling slightly apprehensive about it because of the potential side effects. However, i am also keen to give it a go to see what happens......

Would be good to keep in touch so we can compare / share our experience.

All the best Disney

[Jocko in reply to Disney71]

Hi Disney, yeah I'm up for keeping in touch. That's good news about the blood count. What was you count to start with ?

I also take aspirin .75mg and have been for approx 4 years. When I was first diagnosed with a high blood count they asked me to stop taking the apirin whilst they looked for the cause. During that 2 week period I didn't feel to good. I had bad headaches, pins and needles in my arms and lower legs, at times the ends of my fingers felt like they were burning and I had dizzy spells. Amazingly as soon as I went back on the aspirin these effects disappeared immediately.

Let me know how you want to keep in touch ?

[linphy]

Hello I was injecting Pegasy interferon up until July when I started feeling rough. Had terrible hives swelling rushed into hospital twice, carry Epipen round with me now. Still off working had more blood tests this morning investigating hives and swelling. My platelets did go down which was one good thing. I'm seeing my consultant september. It didn't work for me, hopefully your get on ok with it. Good luck 😊

[Jocko in reply to linphy]

Hi Linphy, thanks for the reply. Sorry to hear that it doesn't appear to be working out. I think it's important for a newbee like me to know that things don't always work out. Good luck with your next appointment.

[linphy in reply to Jocko]

Thank you. Hope it works for you, keeps us all updated 😊

[harleydavidson]

Hi Jocko. A Friday night sounds good, about an hour before bed with paracetamol just in case. I didn't have side effects thank goodness. I wish you luck. Mel x

[Jocko in reply to harleydavidson]

Hi Mel, that's exactly what I was thinking of doing. I see my doctor on a Monday so not sure that'll happen first week but who knows. The only thing that slightly puts me off this approach is if there are side effects and I need some advice I will need to potentially wait until Monday. Maybe early on it might be best to take it early in the week so I have expertise to hand if things aren't so good.

[harleydavidson in reply to Jocko]

That's a good idea actually, I hope you don't have any bad side effects and that it works well for you 😀

[crapaud]

Hello Jocko,

I was on Pegasys for around 10months starting at 45mg weekly building up to 135mg every fortnight.

One aspect that determined my injection day was that for the first six months my haemo required a blood test a couple of days before I injected to 'adjust' the dose.

Unlike yourself my condition prevented me from working - I was in a managerial high stress environment where no latitude for 'slack' was possible. (I had MF + MDS-u which resulted in an SCT the following year)

Had light flu like symptoms from time to time and itching at the injection point a week or so after the injection.

On the positive side my awful nightly sweats vanished almost immediately and my blood counts stabilised a bit.

Hope all works out well.

Crapaud

[Jocko in reply to crapaud]

Thanks Crapaud

[gset]

I too am the same age with same ET CALR and started inteferon this year. I have found by taking both paracetamol and an anti histamine half an hour before injecting and doing this jn the evening I almost have no the flu like effects am ok the next morning. I found diphenhydramine recommended by someone on a us MPd site and it really works for me. It is nytol tablets in the UK. Hope this helps.

[Jocko in reply to gset]

Hi gset,

Thanks for the advice that's really interesting. I also take warfarin which means I have to check that I can take other meds. I've not heard of diphenhydramine/nytol what does it help with ?

[Susana7]

Hi Jocko, I believe I have replied to one of your earlier posts on Pegasys. I have been taking Pegasys for 22 months and it has been brilliant for me. I have PV with very high platelets, am 53 and work full time in a stressful job. Pegasys has normalised all my blood counts with only minor side effects! I started at 90mcg/week, then reduced to 45mcg/week and am currently on 45mcg fortnightly. I inject on Friday late at night and go to sleep after. Reason being I did not want it to affect my work. Occasionally I switch to a Thu or a Sat if Friday is inconvenient. I always put EMLA cream on the injection site (lower tummy) so it is completely pain free (a tip from my haemo nurse!). The first few times I injected I took paracetamol fearing the flu like symptoms, but I found I really only experienced a headache and some dizziness the very first time! Apart from the first shot, i have no immediate side effects from the injection. Longer term I did experience other (minor) side effects. I tend to get dehydrated fast, so always drink lots of water while on Peg. I had some hair thinning/loss at 90mcg, between months 4 and 9, which stopped naturally when I switched to 45mcg. I developed cotton wool spots in one eye, which resolved naturally but means I am now regularly checked by the ophthalmologist. And I developed a very sore mouth which turned out to be an auto immune common condition (lichen planus) and am now using a steroid mouthwash that manages it very well. I am also very tired in the evenings, but then I was like this even before Pegasys! Overall, I feel great, and just get on with work and life as if I did not have this disease 😊. All the best to you, I hope Pegasys is as effective as it has been for me. Susana x

[Jocko in reply to Susana7]

Hi Susana,

Thanks for the reply.

Great tip about the EMLA cream.

I'm so glad I asked this question because the information from everyone has been so interesting and helpful.

The different tips and strategies are really useful because it's coming from people who are going through different experiences.

It sounds like you're doing really well and that's fantastic to hear. Good luck thanks again.

[Jbut]

I have been on interferon for 8 years i take mine just before i go to bed,take paracetamol just after,helps with side affect chills etc,i take my injections twice a week,first few weeks felt like i had a cold,tied etc,with time side effects not as bad,so good luck and i hope the treatment is good for you,am doing fine

[Jocko in reply to Jbut]

Hi jbut, 8 years dealing with inerferon that's fantastic. t's great to know that it's possible to take this drug long term and still keep going. Thanks for the inspiration.

[Jbut]

I have ET,found after a stoke at 39 years old,was scary at the time,then being told to have interferon injections 4 times a week,been reduced to twice a week,my platlets have been around the 350, is great,at first i was worried about the injections side affects etc,but with time i try not think about it,i still work in the nhs myself,have gone to part time because i was doing 12 hr shift 4 days a week,only reason just feeling tired,so just try and carry on as normal thats the best thing to do,but take a rest if needed good luck let me know how you get on

[Jocko in reply to Jbut]

Hi jbut, thanks for the encouragement. The thing I am realising is that everyone has a different experience and although I don't know what will happen it's going to help by drawing on other peoples experiences. I'm a pretty positive person and will be trying to live as normally as possible.

[Jbut in reply to Jocko]

I was the same many years ago its the not knowing how the treatment if any will effect you,but i carried on working when i started the injections just to take my mind off it,could of had time off,iwas in work the next day after injection,was fine,with being young with et doctor said interferon was best for me

[Jocko]

OK, as promised, an update on how things have gone, 5 weeks in.

I started taking PegInterferon 45mgs 5 weeks ago today. I decided that I would inject Monday night and live with any side effects whilst at work. The first week I did feel a bit like I had Flu but decided to cycle to work as normal. The weeks after that have been mostly OK.

I went to the hospital today for results of a blood test from last week. In May my count was 1250 and 2 further blood tests were 1050. Today's count was 458 so it seems to be working.

The doctor has given me 12 weeks of injections and I will see him in 3 months time. I have been taking aspirin for the last 4 to 5 years and as of tonight I am not taking it anymore. I will see how that goes. All in all a massively positive result.

I have just injected (my 6th) and plan to cycle to work tomorrow.

I don't want to get complacent but happy days.

Thanks to everyone for your advice, it's massively helpful to have the benefit of other peoples experiences.

Good luck to everyone out there going through their own personal story.

[Helpatlast in reply to Jocko]

Excellent to get your update and see you doing so well on Peg. Interesting as I am being encouraged to go over to it after 11 years on HU which is not working so effectively now in keeping my platelets low - so your positive experiences are most encouraging! All the best.

[Jocko]

Update number 2.

I went to see the consultant in January. Counts now down to 256 and he and me were very happy. Still cycling to work and all OK. I take paracetamol as and when to control any muscle aches but that is no big deal. I am back on aspirin as it appears that it does help control amorosys fugax which I have because of my replacement heart valve. So right now all is good.