Oh @Marylin they sound scary side effects, have you checked them out with your medical team and if so what have they said.
Take lots of special care of yourself.
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I found my M P N buddy through a Hope course run in 2019 by Leicester Royal Infirmary. I was very fearful of my Interferon Alfa injection due to the many side effects listed. While on a low dose of 90 m g a fortnight I was fine but now that has had to be doubled in frequency I have the subsequent day feeling rough for a good many hours. This is once a week. I can not plan to do anything on a Saturday now but rest. I hope after my next blood test that my platelet numbers will have reduced and the Interferon can be reduced in dose.
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@Gail1 Saturday sounds a rotten day for you, but perhaps rest is often what your body and you need,
Take lots of special care of yourself
I’m on half of what you are on, but have moved from fortnightly to weekly and I’m now finding myself feeling very lethargic and easily irritable. I may think to changing the day I take it to a midweek day so it doesn’t ruin my weekends.
Definitely feel for you
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Hello Gail - like Rammie I feel for you, I am weekly injection of interferon for last three years and it does wreck me - it’s good successful treatment but for some does have its effects, I am one of them and definitely have had to adjust my life to accommodate it especially the fatigue - so every empathy to you !! Helps to know others that know the effects isn’t it all the best
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I hope the change of day helps @Rammie18. It must be really frustrating when you feel so tired.
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Hi @Jilly20. It seems like the side effects can be exhausting! It’s great that you can all share your experiences and support each other X
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I have told the yet another consultant I had never met, he doubled the dosage as my platelet count had shot up, he told me it would take a month for my body to accustom itself to the new dosage.
Wondering if lack of blood test tubes will affect the fortnightly monitoring. As if we haven’t got enough to worry about. Life continues to be a roller coaster ride. Sadly I never liked fairground rides even when I had some energy.
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Nope - I’m not much of a fan of roller coasters either. Ups are ok, downs not so good eh!
How have the side effects been, no improvement?
Hopefully the new dosage will work and you will start to feel a little better.
In the meantime, make sure you take care of yourself X
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Oh @Marylin and @Nichola75 I hate rollercoasters too, emotional, medical and practical.
Isn’t it interesting how some medications are instantaneous and others take ages for our bodies to accustom ourselves to.
I have no idea if the shortage of blood test tubes will affect us, I have to say that we have probably used more than our fair share over the years !!!
Look after yourselves.
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Hi
Not feeling any better as yet. Just more skin rashes, more joint aches, more night sweats and more diarrhoea. Did feel more upbeat on Tuesday when saw my photo and small write up in the Daily Express, put in by Blood cancer U.K. PR people, to publicise blood cancer awareness month. I know PV is hard to diagnose and hoped it would save someone else suffering undiagnosed for too long. I received a NHS email on Wednesday telling me that I am now a vulnerable person and may want to shield. Even in my advanced years I had worked that out. For the rest of the time I am too tired to participate much in daily life, I am boring. Another telephone consultation on Tuesday. I wonder if I will have met/spoken to the consultant before
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Sorry to hear things aren’t improving. Since moving onto weekly doses of interferon ive found myself becoming very moody and self isolated. Not sure if it’s just fatigue as I find it such a difficult symptom to diagnose. Ive devised a block set of meds to take in the morning and before bed that seems to help… but it’s the irritability and itchiness that’s driving me mad at times. Ive another blood test due next week which should tip levels over for another venesection, but we will see. If anything I’d say it’s my anaemia that’s a problem which is being shoved to the side due to my PV.
Well done for writing an article will definitely try and locate it. 
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Oh @Marylin I am so sorry you are feeling so rough and tired (I am sure you are not boring) and also @Rammie18 that you are moody, self isolating and so itchy.
So @Marylin you are now a media star, wow, you will be signing autographs soon.
Please both let us know how your tests and consultations go and don’t forget unless you really tell a member of your medical team how you are honestly feeling they will think everything is fine, don’t forget my pleasantly assertive approach which helps me.
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@Rammie18 and @Marylin. Not good that you’re both not feeling great. I do hope you start to feel a little better soon. Not nice feeling like that!
Well done @Marylin. I just wrote a piece for the Follicular Lymphoma Foundation with the aim of spreading awareness. It’s such a good thing to do and I thought quite therapeutic! I was quite apprehensive though as lots of people still didn’t know about my diagnosis 4 years on. Not sure if I’m glad they do now or not! 
Please let us n ow how you both get on with bloods/consultations X
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Hi Rammie and Nicola
Some good news, my platelet count has gone down. Got told off for having my blood test a week before my consultation, told them the appointment letter asked for it to be done a week before. There still seems to be a fault with administration. Have got to continue with double dose of Hydroxycarbamide, pity they haven’t prescribed it before as I run out tomorrow. I did try to tell them but was told to wait. I really don’t have patience with inefficiency. It is wasting money if they have to courier it from Plymouth to Launceston but what does this old lady know?
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Great news on the platelets…
Incompetency is one of my biggest pet peeves. I understand being short staffed but everytime I tend to go to the hospital or gp there is always someone different all with a different opinion. It’s like going to the dentist or car garage… You go to one one day and go to another the next day and their will tell you something completely different and then whing about the previous and how hard they’ve now made their job.
Thanks for finding the time to keep us posted.
My blood tests were often fortnightly but now once a month or at least whenever I get a letter requesting one.
I look forward now to getting my results… But sad but I’ve created a spreadsheet so I can monitor all the things being tested and then recognise what’s happening. It’s all good testing my blood for lots of things but whenever I get any feedback they either say things are fine or nothing needs doing or focus on one thing.
My hcr is flirting with the venesection boundary… but was told I won’t be having anymore as they are going to try and control it through the interferon.
Feel like as soons as I’ve said one test and set of results the only thing to be anxious about the next one.
The saga continues…
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Good news on your platelet count. You must be pleased!
It’s a real big bug bare of mine as well. Why do things have to be made so difficult (silent scream here!)
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Hi @Marylin, yes, some good news, it is wonderful about your platelet count.
Yes, as others have said it is administration that seems to often let the NHS system down.
I had an appointment at the hospital for mid August and the week before it was confirmed by text, again by automated telephone message, then 3 days before I got a telephone call to say it had been cancelled and that more clinics would be put on for the beginning of September and I would get a letter with an appointment, then 1 day before I got another text to confirm the appointment. So I rang the department and it was told that the cancelled the automated contacts I had were by an outsourced company.
No appointment arrived so at the end of August I rang again and was given an appointment for next Tuesday. I have had a confirmation text today and I just await stressfully, nervously and anxiously now !!!
Gosh @Erica. It’s so unfair you have to do all that chasing around and then still worth about whether it will be cancelled! So so frustrating! X
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I am really very annoyed with the consultants, my medication did arrive by courier today, but at what cost to the nhs? By chance I happened to check the dosage, normally I don’t check dosage on repeat prescriptions. It had been changed, although this was not discussed during my consultation. Perhaps we should tell them about the stress they are causing us. If we don’t tell them it isn’t going to change. This is difficult as we are so dependent on them for guidance and treatment. I know the nhs have done a marvellous job over the past year but this doesn’t mean they are perfect and shouldn’t review their flawed systems.
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