Great news Dougy, I’ve had my blood test today two weeks in of full dose. Was expecting the nurse to ring with the results this afternoon but sadly she’s obviously run out of time. Hopefully I’ll hear tomorrow and keeping my fingers crossed my platelets have reduced. All other results are in range, it’s so frustrating that the platelets are being so stubbornly high!
Hope all continues to go well for you. Take care
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Hi @Helena, sorry to hear that you did not get the call from the nurse yesterday with your blood results.
Personally if you do not hear today, I would just chase the nurse.
Please do let us know how you get on and be kind to yourself.
I have at last got hold of the specialist nurse, it took a few messages left but eventually she returned my call. I had slipped through the net sadly, they are all so overwhelmed with patients it’s no surprise. Anyway good news is my platelets are falling well and at 417 the lowest they’ve been for 18 months. I have a consultant telephone appointment on 22nd and he’ll advise me on the way forward. Thank you for your support and I’ll let you know how I get on!
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Yes, @Helena please do let us know how you get on on the 22nd.
Trust all is still going well Helana.
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Hi Dougy how kind of you to think of me. Thank you 
I’m doing ok, getting used to injection and my platelets are down to normal range thankfully.
I have had extreme fatigue but this seems to not be as bad as at first, but the itching has been driving me crazy! I have a wonderful homeopath who is supporting me with this which is easing now.
I had a 3 minute conversation with my consultant on the telephone and he wants me to continue with weekly injections for the moment and have a telephone appointment with the specialist nurse on 20th May.
Of course in the meantime I will run out of injections so I will attempt to contact her to find out how to get a repeat prescription. I don’t feel very supported and I’m having to fight for what I need. I didn’t want to go on medication and it feels like now I’m on it they can tick me off their list!
Anyway, enough about me being negative, how are you doing? Hope it’s all working in your favour too and you’re managing well.
Look forward to hearing from you and take care
Helena x
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Hi @Helena please do always share how it really feels to be you, you are part of our forum family and we are here to support you.
Please do keep posting how you are doing.
Really look after yourself
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I feel good in myself thanks Helena. Slight itchy skin controlled by antihistamines. Hiwever my Neutrophils have dropped below 1 so my frequency is being reduced to 45 everyother week. I also need a venosection after my 12th injection which is 14 weeks since my last.
Hoping my Neutrophils recover
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Thank you Erica, I’m doing the best I can to keep positive, but I’m struggling at the moment. However, we have at last got the sun and that has given me some energy and lifted my mood today. I’m not good at reaching out to others, I’m the supporter! We all need help sometimes and I appreciate your kindness.
H x
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Hi Dougy
Sounds like the medication is working too well for you, but how lovely to only have the injections once a fortnight. I didn’t think of taking anti histamine, what a good idea. If it gets really bad I’ll give it a try. The skin around my injection sites are very inflamed so it may help with that.
I’ll let you know the results of my blood test on 20th and we’ll see what happens next. Haven’t had a test for almost 8 weeks when I get my next one! So much for being monitored! 
The sun is shining today and that’s lifted me, hope it’s shining on you too. Take care H x
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Hi Dougie how are you? I’ve been meaning to post for a while. I’m still on 90 weekly which has disappointed me as I thought I’d be able to reduce the dosage by now. However my bloods are all positive, I’m booked in for venesection Wednesday but hoping my bloods are ok and they cancel it. You take care and hope all is going well for you. H
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Hi Helena, got my blood results yesterday snd my neutrophils are back up in the green. Proves it was the Pegasus that caused them to drop. I’ll need a venosection at the end of the month which will be 2 months from my last. TBH I’m ok with that frequency.
Glad to here your bloods are largely good. Remember Peggy is a marathon not a sprint and manyvsay it takes upto 6 months to properly manage the levels.
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Hi Dougie, thank you for your reply and encouragement. I need to learn more patience 
Good news your neutrophils have returned to be within range, I am due venesection tomorrow but hoping my bloods are in normal range so I don’t need to go. Not that I mind at all, the nurses are lovely, I’m just hoping the interferon is doing its magic! We’ll see. I’m also on two monthly recall.
Take care of yourself and let me know how you’re getting along H x
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Hi @Helena I think I can safely say that not many of us on here are are ‘patient patient’s’!!!
I agree I have to have an infusion on Thursday and I am quite looking forward to it as it is like going going home as the nurses are so lovely and if I am good I might even get tea and biscuits as well.
Please do keep us updated and really look after yourself.
Morning Erica
Sorry for the late reply, hope your venesection went smoothly. Tea and biscuits eh! I get offered water! I had venesection a couple of Wednesdays ago and my vein wasn’t playing fair as they only got 250ml instead of 500, but as my target is 0.45 and I was in fact 0.45.7 they felt that was ok. I was surprised I needed to go as I was practically on target, but the nurse said as I hadn’t been bled for 6 months they felt they ought to. Not sure if that’s their protocol and I’ll discuss it at my next specialist nurse appointment at the end of July. Thank you for reaching out I do appreciate it. Hope all remains well with you H x
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Hinall thought Id let you know I had a Haematology appointment last week. Due to.the junior doctors strike I saw the senior consultant. She was great, informed me that Professor Harrison had done a presentation where she advocated managing Allele Burden and monitoring the same.
She also restarted me on Pegasus. I restarted on 45mg every other week. Heres hoping my Neutrophils play ball thus time.
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Hi @DougyW that was a bonus, please do let us know how you get on with restarting on Pegasus
Look after yourself
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Hi Dougie
How’s the pegasus going? I’m keeping everything crossed for you that it goes well for you this time. Let us know how you are getting on
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Hi Helena. Had my first 
on Sunday. No noticeable side-effects. Fingers crossed blood cells react as they are meant too.
Trust all is well with you
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Hi Dougie
Pleased it seems so far so good with no noticeable side effects. When will you have your next blood test to see how your blood is doing?
I’m actually feeling really well at the moment, thank you. I’m coping with injecting weekly and I have now accepted the fact I have this diagnosis and the treatment is working. That goes a long way to making life easier for me! You take care and look forward to hearing from you soon with positive results.
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