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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Hi @Jimbo165 and everyone else- Iâm glad youâre starting to notice an improvement in between your injections. Iâm now on 10 day intervals and hopefully going to 2 weekly if my platelets are still behaving ( theyâve come down to below 400 so am mightily pleased!) my body seems to have got used to the interferon and I now feel the best Iâve been since this all started- I even managed to play tennis match for my club at the weekend.
Iâm still really worried about this shortage issue as desperate not to have my medication changed as itâs obviously working for me and all my side effects have reduced. I listened to the Myeloproliferative neoplasms (MPN) vogcast with Dr Claire Harrison where she says that they are hoping things will be back to normal by summer or autumn 2025- thatâs quite a long time in my book!! It was also interesting that she covered the subject of keeping whatâs left in the syringe to use the next time. She said she didnât advise it but if a nurse or specialist has suggested it then just make sure you use a new needle. This would definitely mean that our doses would last longer and I shall ask my consultant at my next appointment.
Are you to stay at your high level do you know yet @Jimbo165 ?
Take care everyone
Jillyj
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Good evening @Gillyj (also Jillyj!) and everyone else, I hope you are all as well as you can be and arenât suffering too much from the constant changing of the weather and temperature!
I really do hope that you can increase your self-stabbing intervals from 10 days to fortnightly and that your platelet count will stay under control.
I am due back at LRI this Friday (the 18th), and have yet more blood tests tomorrow. These will be interesting as I had both my flu jab and my Covid jab on Saturday!
The âgood weekâ at the end of the 3 weekly intervals is something that I almost look forward to now, but I wait to see what my blood results are, with special interest on the state of my liver. I am learning to live with the âroughnessâ of the week following the injection, with its âroller coasterâ ride, although it feels more like a big dipper to me, slowly building to a âwhooshâ down, then to plunge through the log flumeâs water splash, before rising up to the heady heights of merely being knackered for a day or two, or more.
I shall know more about the shortage issue, and what dosage I will be using, on Friday and will report back after then.
Meantime I have the joy of a telephone appointment with Occupational Health on Wednesday afternoon to look forward to. Iâm hoping that the Doctor will have actually heard of Essential Thrombocythemia and Myeloproliferative Neoplasms this time as at my previous âchatâ, in August 2022, the Doctor hadnât.
As always, take care, stay safe, be kind to yourselves and carry on smiling.
Best wishes,
Jimbo165
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Morning @Jimbo165 - I forgot I was with a G!!
Even though the good days are after a really bad week itâs good to know that some good days will come isnât it!
Fingers crossed for your bloods - keep us posted and good luck for your next appointment
Gillyj
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Hi @Gillyj and @Jimbo165 and everyone else. Glad you are getting some good days and hopeful for the same for me soon . I have tablets now for the overactive thyroid caused by the interferon but there is a chance the white blood cells may crash so i need a blood test on friday and will resume interferon after a 4wk break. I think the plan is to move to 3 weekly at least until it can be established that all the medications work together. I feel like i have a long way to go to get the platelets into the normal range but i think i will happy just to get them lower than they are for now. It is just a juggle to get the best result that is possible for me i guess.
I have 3 syringes left so on a 3 week cycle that will at least be a few weeks before i need to panic about getting me. I didnât realise the shortage was going to continue for such a long time. It is a worry.
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Hi @Chrispy @Jimbo165 - yes it was a shock to me too- I mean next autumn is a long time for us. The alternative ( canât remember the name) is only licenced for Polycythaemia vera (PV) in Scotland, theyâre trying to get it licenced in the UK and to include Essential thrombocythemia (ET) but apparently it is far more expensive than Pegasys and theyâre lobbying the government ( canât see that happening fast!) I feel we have enough on our plates without having to worry about the medication- whether thereâs enough or whether itâs going to be changed and then start the whole rigmarole of getting used to a dose and all the side effects it will bring with it.
It sounds like youâre getting good help @Chrispy - I hope your thyroid starts behaving. I have Hashimotoâs disease so basically my thyroid is destroyed and I take regular thyroxine- probably easier to regulate than an over active thyroid.
Are either of you going to the Myeloproliferative neoplasms (MPN) conference in November? Iâm on the wait list unfortunately to get in
Keep well everyone
Gillyj
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Good evening @Chrispy, I am glad to hear that the tablets for your overactive thyroid issue work, and without any further âinteractionsâ and that any and all crashes are avoided!
One thing I have learned during my 6 &1/2+ years of this journey, all on Pegasys, is that it is a complex and unscripted game of balance, where no two results are the same, and no two treatment schemes have the same outcome!
3 syringes at 3 weekly intervals mean that your next requirement for the sharp and pointy objects should come wrapped in shiny, festive covers, with a little bow tying it all together! Ho Ho Blinking Ho.
As always, stay safe, take care and be kind to yourself.
Best wishes,
Jimbo165
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Good evening @Gillyj, I hope you are as well as can be. Yes, it is definitely an unwelcome, and most unwanted, additional stress and the fact that there is so little information in the public domain isnât helpful either. The fact that it is âhopedâ to be resolved in a years time is a potential cause of concern.
Are you based North of The Border?
Iâm sure that I have seen a post or a link somewhere on the Forum (another Frankie Howerd moment there!) about the Myeloproliferative neoplasms (MPN) conference but I canât recall where or when it is taking place. I still have two weeks of Annual Leave to use before the end of the year so I may see what I can do, once Fridayâs appointment is out of the way.
Meantime, and as always, take care, stay safe, be kind to yourself and keep on smiling.
Best wishes,
Jimbo165
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Morning @Jimbo165
Iâm down near Gatwick- this conference is the one in London Iâve copied the info below as you can still register for the live streaming-
The Living with MPNs Day Saturday 16 November 2024
NOW FULLY BOOKED FOR ATTENDING IN-PERSON
This event is now fully booked for attending in-person, if you would like to be added to the waiting list for an in-person place please email alex@hartleytaylor.co.uk
You can still register for the live streaming.
If you have booked to attend in-person and your plans change and you are unable to attend, please cancel your booking as soon as you can so that your place can be offered to someone on the waiting list.
More information about the Living with MPNs Day, including the link to register for the live streaming, can be found hereâŚ.
Not sure why it copied in that format but it gives you most of the information needed
Have a good day
Gillyj
Good evening @Gillyj, sorry for the delayed reply: your message caught me as I was heading off to work this morning and have only just settled down at home after my âpost entrepeneurial activitiesâ.
My apologies for âmis-locatingâ you as I thought you may have been Beyond Hadrianâs Wall with your reference to issues in Scotland.
I doubt that I will be able to attend the listed conference in person but I might see if I can register for the live streaming.
Well I have had my Occupational Health Assessment today, by telephone. There was a bit of a language barrier, as well as, at times, poor signal. But I should get sight of the report in a day or so, for my personal verification, before it is sent to my employer. I think the outcome will be that I can carry on âself assessingâ my ability to stay safe on the road in my lorry.
As always, stay safe, take care and be kind to yourself.
Best wishes,
Jimbo165
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And good evening to you @Jimbo165 - language issues and bad signal- letâs hope HR heard enough and will be on your side!
I shall register for the seminar online but hope that I might get a place at some point.
Keep driving those trucks and stay positive!
Gillyj
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Good morning @Gillyj, @Erica and everyone else, hope you are all well and not looking, to misquote Billy Connolly, all windswept and interesting! It has been a bit blowy round this way this morning, not to mention ever so slightly damp!
Just a quick update following on from my appointment with the Consultant on Friday at LRI. Daughter No4 came along as my chaperone (or handler as she like to call herself!).
My pesky platelets seem to be stable and have in fact come down slightly to be below 400 and, even more encouragingly, my liver is still only misbehaving a little bit.
The Consultant (a Consultant Pharmacist Haematology) is concerned about the number, location and frequency of my headaches and even phoned me on Friday afternoon to ask a few more questions about them!
As regards my Essential thrombocythemia (ET) treatment, I am to drop back down to the 90mcg injections at 3 weekly intervals as the hospital currently have no stocks of the 135mcg Pegasys injections, although the stock levels change on a weekly basis. As the Essential thrombocythemia (ET) seems to be a relatively slow changing cancer I am happy to go along with the advice of the specialists. And I am due back at LRI in 7 weeks, so enough time for the next two injections to take place.
In the meantime and as always, take care, stay safe, be kind to yourselves and keep on smiling.
Best Wishes,
Jimbo165
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Morning @Jimbo165 and everyone! Wet and windy down here in Sussex too!! Just come back from a show jumping lesson with the grandchildren- thoroughly soaked!!
Thatâs amazing news about your platelets- well done! And even better that your liver is not too bad 
and you must be thrilled to be going down to 90 again !
Keep up the good work
Gillyj
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