MATEs FORUM

Hi Everyone!,

Thanks to those who have created this forum - it is appreciated.

I'm Dave - and was diagnosed with ET (Jac 2 mutation) about 4 years ago. Have been on aspirin for that long but as the numbers have increased it was decided that I start on Pegasus. I am now on .45 per week. My platelets went from 1000 and are at 600 now.

Question I have is does anyone else have symptoms of tingling and lethargy in only 1 side - for me it is the Right leg, Right arm and Right side of face (although I am getting tingling on the left side of my face above the ear too now. This is mainly since I have been taking injections. This is combined with lethargy and mild feelings of nausea. It is very annoying and hoping these symptoms will subside once I get used to Pegasus?? - it has been a good 3 months on the injections.

Hoping the symptoms are linked to the injections and not something else. I have had brain scans and veinous/artery scans and that all comes back clear. Otherwise healthy and exercise daily.

Look forward to hearing from anyone who has, or has heard of similar symptoms.

Cheers all.

Dave

Hey Dave...

Welcome to MATES, glad you've found us okay & managed your first Post...

My name is Steve, & we have communicated via email previously. Unfortunately, I am not on Pegasys' but Ruxolitinib, because I am Post ET / MF.

However, many of our members here are on Peg' & I am sure that some of them will hopefully be along shortly...

The way the FORUM operates is that your First 2 or 3(?) Posts are required to be approved, and after that just Post away as often as you like.

Remember Dave, you MUST Subscribe to any Post that you want to be notified for any & ALL responses etc.

You'll note there is a tiny radio box on the top left hand side of the Forum, just tick that Box, and when making a Post, if you scroll right down to the bottom there's another Radio box there to be Notify me when a reply is posted. Let me know if I can be of any assistance at any time...

By the way, on SUNDAY December 1st between 6-8PM we will be hosting Australia's premiere MPN Specialist, with Dr Cecily Forsyth joining us for a Q & A.

All are welcome of course and hopefully you'll learn some useful MPN tid-bits on the night...

Best wishes Dave

Steve
MPN-MATE RF Admin

Hi Dave
I’m Mark and am ET jak2+ as well. I’ve been diagnosed 10 years ago and have been on Pegasys for the last 6 years. In answer to your question, no I haven’t experienced the body tingling side effect that you describe. I was on 90 mgs weekly for the first 18 months and my main and dominant side effect was strong fatigue. I’d inject on Sunday night and the fatigue would hit Monday arvo and lift by Friday morning, but then I’d repeat the whole cycle again on Sunday night. I learnt to live with the fatigue and ‘listen to my body’ when it told me I’d need to lie down and that was much easier to do when I’d retired, but much more difficult to do when working full time as a call centre manager. After 18 months of weekly injections my results were good and so my haematologist agreed to start me on fonightly injections and that was much better as it gave me more good days before I had to inject again. 6 years on and all my blood results are great and I’m injecting 67 mgs every 5 weeks. Pegasys is a brilliant drug, but it’s a double edge sword in that I have a had random bouts of urticaria and I have developed an autoimmune disease (Sjogruns Syndrome) but both these conditions are fairly passive/week. I hope this information has helped.
Cheers
Mark