Hi @Happy2019 Personally I always tell my medical team if I am anxious or have a medical reason why a test might adversely affect me and I have always found them very helpful.
Please do let us know how you get on and be every so kind to yourself
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Good evening @Gillyj and @Erica, and everyone else, I hope you are all as well as can be and that none of you have been swept away by the rains of the last couple of weeks. I know that I have spent much of the last fortnight âwetter than a fishâs wet bitsâ!
Well now, I had my bloods done last week and my telephone consultation with my CNS on Monday 30th of September. My platelet count has come down a little (good news) but my ALT liver function has risen considerably (not such good news) in the last 6 weeks or so since my previous visit to LRI in mid-August. My next appointment, which was scheduled for the 8th of November has now been advanced to the 18th of October, some three weeks early.
It all feels slightly unsettling in some ways as this time last year I was on 3 monthly appointments but this year started off at 2 monthly, then 6 weekly and now just under 3 weeks until my next appointment. However it is also a sign that my health is being closely monitored, which is a good thing. I am to have a further 135mcg dose this Friday, which now needs collecting.
The Pegasys shortage then âhove into viewâ in the chat, with supplies being ârestrictedâ in this area, and the collection process having been tightened somewhat and is now to be made from a âsecure areaâ within the hospital rather than from the pharmacy, along with restricted hours for collection too.
Other than this, things feel okay-ish at the moment.
Take care all, stay safe, be kind to yourselves and keep on smiling.
Best wishes,
Jimbo165.
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Hi @Jimbo165 thanks for your update, it was like a rollercoaster reading it.
I took from it that you are being closely monitored, which to me is the main thing.
Please do let us know how you get on, take care, stay safe, be kind to yourself and keep on smiling too.
Jimbo165 just wanted to wish you all the best with your appointment. Liz59
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Hi @Jimbo165 ,
As you say- itâs brilliant that you are being monitored so carefully but I can totally understand your worries and Iâm sorry you have to have another big dose of interferon.
With this shortage I donât know why they donât produce different quantities of it- so much gets wasted doesnât it! I feel we should be able to use whatâs left in the vial but weâre told to discard.
Stay strong and positive- and tell that liver of yours to behave 
Gillyj
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Good evening @Gillyj and everyone else, I hope youâve had better luck than I have in avoiding the rain today. Would you like to hazard a guess as to who may have discovered today that one of their work boots is no longer waterproof? 
I agree with your sentiment regarding the injections, as I started off, back in the mists of time some 6& 1/2 + years ago now, on 45mcg doses, in the 90mcg syringe, which began with me âejectingâ half of the contents before injecting. Even then my Scottish heritage came to the fore and it felt wrong to me at the time.
Iâm a generally positive man, and still have a smile on my face most of the time, but I think that my pesky liver only ever wants to âturn a deaf earâ towards my pleas for good conduct these days!
Take care all, stay safe and be kind to yourselves.
Best wishes,
Jimbo165
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Hi @Jimbo165 It is great to hear from someone who as been on this journey for so long even if you have incurred problems. In my case i have already had problems but mine is an over active thyroid. It is now a balancing act with medications to give the best result. The interferon has reduced my platelets from 1700 to just over 1000 in 2 months so it is working but the thyroid problems is giving me heart palpitations. I am due to start medication for the thyroid shortly but will need blood tests at weekly or 2 weekly intervals as white counts can fall drop off a cliff. I also have Chronic myeloid leukaemia controlled with medication which adds another dimension to the balance. Interferon will be every 3 or 4 weeks depending on the blood test results .
Everyone seems to be working together and i do feel looked after but my body just doesnât seem to do what it needs to do. I just hope all the medications will work together to give a result that can be lived with.
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Hi @Chrispy, and everyone else, I hope you are as well as can be expected.
Yes, it has been a long old journey so far, and I expect it to go on for some time yet! Iâm glad that your platelet count has come down as much as it has, even if it is still quite high, but it is heading in the right direction. Iâm sorry to hear of your thyroid issue although the heart palpitations must be a bit disconcerting for you.
I hope that your supply of Interferon isnât as disrupted as mine seems to be at the moment.
Following on from Mondayâs telephone consultation and an arrangement being made to collect some more Pegasys on Thursday, during ânormal hoursâ (whatever they are!), I booked a half dayâs annual leave, and still managed to work 2 hours over my half day! I arrived at LRI at 2pm, went into the Haematolgy department, who denied any knowledge of my medication. Cue much to-ing and fro-ing on the telephone between the reception desk, various wards in the hospital, the pharmacy and then, finally, one of the consultants. 2 hours later I finally received 2 injections to dash home with, where my fridge was eagerly awaiting said syringes.
A session of âself-stabbingâ took place last night and I now feel the usual sniffles and snuffles coming on, along with my insides beginning to ache more than normal.
I have also noticed, and it is quite a noticeable notice, that in my 3rd week I actually feel quite good. To be fair, this is from quite a low bar but, nevertheless, it is a nice feeling and makes me feel that the 3 weekly, if larger dose, may be the way forward for me.
Take care, stay safe and if the weather is nice where you are, enjoy it!
Best wishes,
Jimbo165
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