Hi guys,
So I’m just out of my 2nd blood count since starting Peg, it’s a week early as it’s holiday season...after 6 injections (7th this evening) my platelets have dropped to 600!!! Original count was 1073. 800 last month, 627 this month!!
Delighted to say the least, if this trend continues I’ll be at ‘normal’ levels by next month! This really is a miracle drug!
Hope everyone is enjoying this glorious weather 😎
Kerry 
I’m delighted for you Kerry.
You certainly seem suited to the ‘peg.’ Hope it continues for you. Have you had any side effects?
Mary x
Hi Mary
I’ve had a few minor side effects, tiredness, mouth ulcers and heart palpitations but they have mostly subsided. One side effect listed is loss of appetite and weight loss, me on the other hand am eating like a horse! I’m actually gaining weight!
Back in 4 weeks for another count, not sure what the plan will change to if I drop again, will see what the Prof says.
Kerry
Really pleased for you, it is also working very well for me normalised all my counts platelets now 300 were 1000 6 months ago. I am tolerating 45 mcg weekly with minimal side effects. Felt awful on the standard interferon but peg is much better and felt the best I have since diagnosis 6mths ago. Look forward to hearing how you get on in the next few weeks
Jen
That’s brilliant Jen!!
Are you still taking it? Aren’t your counts still going down or did they settle at a safe number? I’m wondering what the next step is as I’ve only been taking 45mcg, I don’t think it goes lower?
Kerry
Yes still taking 45mcg, counts over last 2 tests have remained the same so fingers crossed all will remain stable. Think there are people on here who are on peg every fortnight or longer but I am still on weekly and don't go back to hospital for another 7wks now as everyone is happy. Thank goodness all my side effects have reduced and it is still working.
That’s great news, I’ll be interested to see what happens with mine as I’m responding to it so well. What happens if your platelets get too low?
Kerry
I am not sure as it hasn't happened to me yet but maybe they reduce the frequency of injecting but hoping they stay stable as the JAK2 is still there reproducing so hoping this dose of peg is just keeping the balance. I have PV and it is helping control my haemocrit, and white blood cells as well as the platelets. That's my understanding. There may come a time where it stops working but I have great hope that new drugs are being discovered so there will be something else if needed in the future.
Keep in touch
Jen
Pleased to hear it’s working well for you too. I’ve been on Pegasys for nearly three years now and it’s worked well for me. My counts are now stable in the 300s and I just take 45mcg every 3 weeks as a maintenance dose - that avoids the counts going too low.
That's great to hear did you start weekly and did your platelets drop quite low before they decided to space out the injections. Am really pleased as thought I was going to have to stop interferon after feeling so bad on the standard one.
I started weekly with platelets at 1100 - initially 45mcg then up to 90mcg. Once my platelets were down to about 500 I started extending the interval to 2, 3 then 4 weeks still on 90mcg , till I got into the 200s. We then agreed to back off to 45mcg every 3 weeks to maintain counts in the low to mid 300s, which still seems to be working. Next check up in 2 weeks so fingers crossed..!
That’s great to know Andy, I’ll keep you all posted on how I get on at next count! Just heading to do my jab now then bed.
Best wishes all
Kerry
I am really delighted for you and thank you for the update. Long may it continue!
All the very best
Susieq
Hi Mackydee123,
Great news it’s working for you.
I had my first injection last Thursday 90 mg. felt tired and went to sleep straight away.didnt have any other side effects till Saturday ....really bad lower back pain ( paracetamol helped) but same back pain came back next day.....more paracetamol. Yesterday I started felling very dizzy not good feeling and woke up again with dizziness. Was wondering if u experienced any of above symptoms at first. Don’t won’t to call the doc yet as i only had 1 injection and want to give my body time to ajust to it.
All my blood test were good apart of platelets (1000 again ) I am Et Jak +
Do I need any iron supplements?
Really appreciate your help
Ela x
Thrilled for you Mackydee123. Do you feel better?
Hey Wyebird
I do feel better, I didn’t even notice I was doing more, lasting longer in the evenings and getting lots done in work. With the heatwave I’ve been really tired which I thought was the Peg, could be a bit of both but actually feeling quite good!
Here’s hoping it continues 😁
Kerry
So lovely to know Thankyou for keeping me informed.
Hi Ela,
I had a few side effects after the first injection, lightheadedness, heart palpitations, headaches, feeling very out of it, lasted a couple of days, was much better after the 2nd jab. I was started on 45mcg tho so your side effects might be stronger than mine were. My routine is Monday nights to take 2 paracetamol at 8:30pm, 9pm do the jab, 9:05 take 2 herbal sleeping pills, into bed, stick an episode of something on and sleep right through the initial symptoms.
Now I’m down to a couple of mouth ulcers that last a day or two and a few headaches. You could ask about lowering your dose to start if you find it too much.
I have too much iron so I can’t answer your question. I take high level B12 to help with fatigue, but increasing your iron levels can mess with your blood count so I’ve been told not to take any!
Let me know how you get on!
Kerry
Thanks for you message Kerry, iam also taking high level B12 after breakfast to help with fatigue. Still feeling dizzy but will wait for my second injection on Thursday and see how I feel.
Have a good evening
Ela
Pleased it's working for you, apart from the side effects. x
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