Finally got the blood test results which really haven’t changed but i am hopeful that relates to the Besremi that i didn’t do right and will improve on my next one. I am being seen by the local hospital and the Hammersmith in London. The Hammersmith blood results I can access on their website so the results are available while i am still in the waiting room waiting to see the consultant. I think my next test is at the end of June so that should give me a trend and see if things need to be changed.
x
Good evening @Chrispy, and everyone else, I hope that you haven’t all melted in the “heatwave” today; it got as high as 22.5 C here in the Midlands this afternoon, nice but hardly the end of the world!
I’m glad that you have had your results now and that there has been no deterioration in your blood work. I understand that Besremi is new to the medical fraternity as much as it is to us, so a “slowly, slowly, softly softly” approach is probably the best way forward, certainly as far as I can see. I am on 4 weekly jabs, at 125mcg, and my next jab is due on the 9th of May, with my clinical appointment on the 6th of June.
Dental wise, I have been able to get an appointment with my dentist for Thursday late afternoon, with the hope that the crown can simply be “re-cemented” back in place, which should be both quick and cheap! Sorry, I think my half-Scottish background came to the fore there!
Fingers crossed for your next set of bloods though.
As always, take care, stay safe, be kind to yourselves, keep smiling and remember your sunblock!
Best wishes,
Jimbo165
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Good afternoon @Chrispy and everyone else, hope you are all well and enjoying the better weather of the last few days.
Well I successfully administered my 3rd Besremi injection last night, so I am now confident in my abilities in that department. I just need to wait until early next month for my next blood tests, with the results due at my next appointment on the 6th of June.
Sorrow to report that my fatigue levels are still appallingly low, also my emotions are more “all over the place”, which is not my usual default setting.
Thankfully I was able to get my crown refitted within the week of its escape attempt, and without too much expense either!
As always everyone, stay safe, take care, be kind to yourselves (Copywright @Erica!) and keep on smiling.
Best wishes,
Jimbo165
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Hi @Jimbo165 fatigue really is our bedfellow isn’t it.
I think for me when I really feel fatigued I also get run down and that is when my emotions are all over the place.
I also know it is far quicker for me to get run down than to build myself back up.
When my thoughts and emotions are all over the place they always verve to the negative.
Glad your escaped crown has been superglued after it’s bid for freedom.
I shall now take my copyright back and say be very kind to yourself and (copyright @Jimbo165) keep on smiling.
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Hi @Jimbo165 I am still getting into the cycle of how i feel when on Besremi. I have the initial exhaustion the day after injecting then it fades to the tiredness at the end of the day rather than the whole day. I need to make the most of the morning as by late afternoon i am yawning and not up to doing anything.
Glad your crown is back in.
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Just realised that I hadn’t “checked in” for a while with my friends on this forum! Sounds like Besremi is going well for you @Chrispy , sorry to hear jimbo that you’re feeling so tired and a bit down.
Reading about your crown has anyone had problems with their teeth breaking? I’ve recently broken 2 teeth- wondering if it’s the pegasys?
Take care everyone
Gillyj
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Good evening @Gillyj, @Chrispy and @Erica, my own apologies for my recent “comms blackout”, almost unforgivable of me, but not quite (I hope!) 
Things seem to be plodding along on the same, or a very similar, path. Touch wood, no more of my gnashers have suffered any further mishap (so far!).
My fatigue seems to be deepening, and my fingers feel so much more sore and achy, a lot more of the time, but my headaches seem to have “got the message” and left the scene, possibly assisted by the daily morning paracetamol (other pain relief medications are available!)
I do wonder (often!) whether the above things are age related, Essential thrombocythemia (ET) related, or treatment related, specifically Besremi, and wonder if any other Besremi users have had, or have, similar issues.
As always, take care, stay safe, be kind to yourselves and keep on smiling.
Best wishes,
Jimbo165.
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Oh @Jimbo165 great to hear from you again.
So glad that your headaches have left the scene.
I’ve heard it said that teeth are painful when they come through and painful throughout their lives.
We really are such complex beings.
I immediately attribute all my aches and pains, lumps and bumps to my blood cancer.
Certainly not my age!!!
However I do immediately get all symptoms checked out with my specialist nurse or medical team otherwise my mind goes into overdrive and I always go to the negative outcome.
I hope fellow forum members will share their experiences for you.
I am taking care, staying safe, being kind to myself and I keep on smiling and I hope you are too.
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Hi @Erica @Jimbo165 @Gillyj and all those following this thread. My last Besremi did leave me more tired than before but only for a few days. I am sorry Jimbo that you have had this tiredness for so long.
I am on the routine run around chasing my next prescription. Even the consultants PA said the hospital had a very confusing system for medication. I did get a call today telling me the pharmacy had incorrectly sent the Besremi to the ward so i will pick it up from there tomorrow. This is after numerous emails and calls which i did luckily start with plenty of time to spare. Hopefully it has been kept at the correct temperature between departments.
When looking up side effects for Besremi i did notice it said it can effect your gums but didn’t mention teeth problems but that doesn’t mean it is excluded.
All the best
x
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Good evening @Chrispy, @Gillyj, @Erica and everyone else following this thread, and thank you for your reply.
Yes, my tiredness/energy levels/fatigue seems to be on a downward trajectory, accompanied by increased itchiness. I also spoke far too early in my previous message with regard to my headaches having “got the message” as they have made an unwanted, unwelcome and very much unneeded return over the last two days: that will teach me to “boast” that something (of a medical nature!) had improved!
Well I had blood drawn off today in readiness for Friday’s appointment so I may know a little more in a day or two. I am bruising more easily just now, or perhaps just becoming more clumsy?, as well as bleeding slightly more too, all of which tends to lead me down the “catastrophising” road. And if that isn’t a real word, then it flipping well should be!
As always, my Forum Friends, stay safe, take care, be kind to yourselves and keep on smiling.
Best wishes,
jimbo165
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Hi @Jimbo165 all I shall say is if it is not one thing it’s another.
I reckon perhaps you might benefit from staying safe, taking care, being kind to yourself and keeping on smiling !!
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Evening @Jimbo165 ,
I love @Erica s reply! Hope it made you smile 
.
Glad you haven’t got too long to wait to talk to your doctor, I’m sure they will have some answers to help you.
Stay strong and keep smiling with your amazing sense of humour
Gillyj
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Hi @Chrispy @Jimbo165 @Erica and everyone else who may be interested!
So do you think Besremi leaves you more tired than when you were on pegasys? I’m still managing to get some pegasys but I don’t know for how much longer- I was supposed to have 4, got given 2 then went back for next 2 to be given 1 and told to come back next week for the last one. We are 40 mins from the hospital and parking is a nightmare!
Off to the dentist now! 
Take care everyone and of course keep smiling 
Gillyj
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Hi @Gillyj @Jimbo165 I think i am less tired on Besremi than Pegaysy but until i have a blood test in a few weeks time i don’t know it it is working. I just picked up 5 Besremi and there are 2 doses in each so there is no shortage there. I wasn’t expecting so many and my fridge isn’t in great shape so now i need to buy a mini fridge that is reliable to hold the medication.
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Hi @Chrispy that’s really interesting and gives me hope if I have to change to Besremi. I currently am not experiencing much tiredness at all with pegasys, I can even play a tennis match the day after my injection! Long may it last!
Let’s hope your bloods are behaving 
Gillyj
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Good evening @Gillyj, @Chrispy and dear @Erica, I hope that you are all as well as can be. @Gillyj, I hope that your dental visit wasn’t too traumatic (or expensive!!)
Yes, I think I am more tired/fatigued/knackered bow I am on the Besremi, but I have no empirical evidence or data to back up that feeling and I don’t know how much of that feeling is down to the Essential thrombocythemia (ET), the treatment for the Essential thrombocythemia (ET), my age (which seems to be increasing at “time and a half”!) or the medication I am on for my dicky ticker!
I am with you with the hospital parking malarkey too, although the fees at Leicester Royal Infirmary aren’t too extortionate.
@Chrispy, I’m glad to hear that you feel less tired, and am not in the least envious (honest!) and I hope that blood tests in a few weeks time will provide you with some good news. I never know whether to wish people positive or negative news as the medical fraternity appear to use them the other way round to us mere mortals! Ooh, a mini fridge sounds like somewhere to keep the beers! 
@Erica, thank you for your kind wishes and wise words. I have made an effort to be kind to myself today with, I must admit, a modicum of success!
As always, my Forum Friends, take care, stay safe, be kind to yourselves and keep on smiling.
I shall give an update after tomorrow’s LRI appointment.
Best wishes,
Jimbo165
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Good afternoon @Chrispy, @Erica, @Gillyj and everyone else following this thread, I hope you are all well.
As promised/threatened, here is my update from this morning’s trip to LRI. It has been 3 months since my last visit there and things have changed, procedurally speaking, in that the “weighing in” area, formally in the Haematology Department, has now been moved in to the Oncology Department. My weight is stable and my platelet count has come down from the high 600’s to the low 400’s, which is good news. My liver function, always an unreliable keeper to the accepted numbers, has stayed just outside of the normal range, which is also good news as far as my Consultant and I are concerned. I am to stay on the 125mcg of Besremi every 4 weeks and to reduce my Hydroxycarbamide intake to 3 capsules per week to see if that will help with my headaches and the itchiness. I will also be off for a spleen scan at some point soon, and also a brain scan (if that can be located!) to see if there is anything “untoward” going on that is contributing to my headaches.
The Consultant has prescribed 3 Besremi “pens” but the Pharmacy would only let me have one with a promise to call me in a months time when I can collect the remainder. I did protest that it is a 30 mile round trip for me, but to no avail. I just hope that Besremi isn’t now going down the “shortage” road that Pegasys did!
As always, take care, stay safe, be kind to yourselves and keep on smiling.
Best wishes,
Jimbo165
PS @Erica, I hope you’ve enjoyed your first day since your latest retirement!
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Thanks @Jimbo165 that sounds quite a positive appointment to me.
Now look after yourself!!!
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Hi @Jimbo165 That does sound positive news but a shame about the trips to collect medication. I am lucky in that my local hospital pharmacy is the one i get my meds from and that is a 30 minute walk or a 20 minute bus trip so i don’t need to worry about parking. My central London appointments are more of a pain as that is usually public transport which is unpredictable. Train, 2 X underground trains plus a bus. My next appointment is 23rd at 9.40 so that will be a very early start but will be my last with my trusted consultant of 20 years as she is retiring.
Hope the reduction in tablets reduces the itching and headaches.
x
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Good evening all, hope everyone is as well as can be.
I am a 60 year old male, diagnosed in 2018 with CALR Positive Essential thrombocythemia (ET), following on from my first (to date!) heart attack 6 months earlier.
I’m wondering if any other Besremi users suffer from “excess” fatigue a few days after the injection? I’ve had 4 doses now, at 4 weekly intervals, and I have them on a Friday evening. As the Saturday progresses I get more and more lethargic and the Sunday is a difficult day if I want to try and do anything at all!
Any responses will be much appreciated.
As always, take care, stay safe, be kind to yourselves and keep on smiling.
Best wishes,
Jimbo165
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