Peg questions

[clevemic]

I am starting pegasys in 4 days and am looking for advice. I am a second grade teacher, and am exhausted at the end of every day. Now that I am starting Pegasys, I fear that my fatigue will be even worse. My dilemma is the following: Do I do my injections on Fridays, and basically give up my weekends due to feeling yucky? Or, do I do the injection on Tuesday nights, and have a sub on Wednesdays? My principal has been wonderful, and granted me permission to take a day a week off. Wondering if others on Peg have been able to maintain their busy work schedules, or should I accept that I may have to slow down? Also, wondering if I should be determined to just gut out the first few weeks, knowing my body will eventually adjust and I'll feel better, or does that never really happen. Thanks for any advice. I am not only stressed about my new meds, but also about doing what is best for my students and myself.

[HardwareHarry]

Hi. I started Pegasys about two months ago- quite low dose (45mcg once per fortnight). I also work full time, though fatigue and pain already make that really difficult; my iron levels have steadily dropped over two years of venesections, and that is one of the reasons for starting Pegasys.

I’ve encountered no immediate side effects after taking Pegasys at all. I take it on Tuesday evenings, around 10pm, then go to bed. I don’t notice any particular problems the next day; perhaps a few sniffles or a slightly dry throat but nothing significant, and thus far I have worked my full hours.

Obviously everyone’s response will be a bit different, and perhaps when I increase my dose things will change, but thus far it’s been fine.

After a couple of months, my blood counts have reduced nicely (Haematocrit, wbc and platelets) and my haemoglobin levels have increased slightly. I haven’t needed a venesection since I started the Pegasys and my headaches seem slightly better too.

Good luck with starting - I hope it works out for you!

Cheers, Paul.

[Jocko]

Hi Clev,

I started 45mg once a week on Sept 11 (a few weeks ago).

I had exactly the same dilimema as yourself and posed the same question on this site.

I got loads of great replies so you may want to check them out.

I am 54 and don't have the same tiring job as yourself (I work in IT).

I am a member of a choir that rehearses on Monday nights, so I decided to take it after practice. I pop 2 paracetamol, do my injection and go to bed. I try not to drink any caffeine that evening.

The first day I cycled to work as usual and I have tried to live as like normal.

The first week I did feel a bit achy and flu like.

However since then it's been fine. After 6 weeks I went to see my consultant and my blood counts are down from over 1000 to 458.

Since then I have stopped taking aspirin (which helped me greatly) which I was worried about. But so far so good.

All in all it's been OK. I feared the worse and it's been better than expected.

Like you I didn't want to ruin my weekends so I decided to start s I meant to go on knowing that I could always change if it didn't work out.

Everyone is different and you will need to see how it goes, but try and stay positive and give it a go the way you want to continue.

I was nervous about doing the injections. But the injecting wasn't as bad as I thought, take a look on youtube to see others self injecting which will help.

I will next see my consultant in 3 months.

My tips would be

Drink plenty of water daily

Don't drink caffeine late

Take paracetamol as and when

Do all the stuff you want to do and see how it goes

Stay positive

Good luck, I hope it works out well.

Jocko

[tessa46 in reply to Jocko]

Hi Clevemic

I appreciate your concerns, I felt the same about starting Pegasus. I started it on 5 September after quite a delay because my blood pressure was elevated. (Stress!). I do a weekly injection of 45 mcg and actually I have been fine, only a slight headache the day after the first injection. I am 69 and had ET diagnosed in 2015 after a slight stroke. My platelets have now reduced from 925 in September to 464. I am someone who is pretty sensitive to any new medication and I try to avoid taking anything, but so far so good with this. I think it is just trial and error to find out what day suits you best. We went to Portugal for a week and a friend who is type 1 diabetic lent me a Frio bag to carry my Pegasus in and keep it chilled, I’m very impressed with the simplicity of it and have just bought one myself. I haven’t had major problems with fatigue but I do take a lot of exercise, probably I have 10% less energy the day after an injection. My consultant has said we can consider spacing out the injections in January if I continue to respond. I hope you will find the reality less difficult than you imagine. Good luck!

[Susana7]

Hi Clevemic, I have PV with very high platelets, work full time, and have been on Pegasys for 2 years. Peg has been wonderful for me and my counts are all normal now! I started at 90mcg/ week, then reduced to 45mcg/ week and now I am 45mcg every two weeks. I have no symptoms at all at 45mcg. At 90mcg I had some temporary hair loss (between months 4 and 9), very sore mouth (resolved with steroid mouthwash) and dehydration tendency. At the beginning I felt tired the day after the injection, but not anymore. The first couple of injections were the most symptomatic, it gets a lot better after that. I work full time in a demanding job, head of my department, so I inject Friday night. It does not spoil my weekend! Mind you, tiredness is the main symptom of this disease for me, that does not go away, I am exhausted every night after work, but Peg did not make it worse for me. On the contrary, I feel better now than 3 years ago, before diagnosis. I use EMLA cream on the injection site to make it completely pain free. Good luck! Susana xxx

[JSKly]

I started Pegasys in May, straight in at 90 mcg and was worried about warned side effects. I've had none. I inject at about 10 pm on a Sunday. I take one or two paracetamol a few minutes before and go to bed straight after. I e had slight sniffle feeling and potential sore throat but nothing developed.

My fatigue is greatly reduced if I take a bit of exercise. I agree with the comments to stay positive and try not to look for trouble but it's very true we are all different go well

[rebeccalub]

I was on 45mcg for 2-3 years. Took Pegasys at bedtime and took a Tylenol with it..........no side effects to complain about. This is dose dependent possibly you could start on this low dose and see how you do. My counts dropped dramatically.

[Wyebird]

Hi, I’m on hyroxicarbomide for ET. You have my sympathy. Your situation is more servere than mine. The best piece of information I read when first diagnosed was to choose what is important to you and give up tasks that are not. If you can financially manage to drop a day’s work, do it. Alternatively, get home help. If having a day off work makes you feel guilty then use your fatigue day foe easy enjoyable low energy tasks such as readying.