That sounds really positive @Jimbo165 so pleased to hear your platelets are down and your liver not far off! Now all they need to do is to sort your headaches and you’ll be a new man apart from the obligatory fatique!
Interesting that there was an issue getting you besremi- they said originally that everyone should grange from pegasys to besremi and that there was plenty of stock! I’ve had to go back 3 times for my pegasys and just get given one at a time- 40 minute journey each way, parking nightmare then a wait at pharmacy of up to an hour whilst they locate it- no joke!
Hope they find your brain - good luck
@Chrispy you sound as though you’re having similar pick up issues
Hi @Jimbo165
I’m also struggling with the Besremi injection fatigue. I have had 2 doses now, 2 weeks apart and take them on Thursday evening. Friday is my non-working day and I’ve been pretty wiped out, slightly better on the Saturday and better again on the Sunday. Monday, back to work! This, on top of my Essential thrombocythemia (ET) tiredness may become difficult to cope with and I fear that it’s not going to improve with time
In a weird way, it’s comforting to know that I’m not the only one though!
Good evening @Gillyj and all of those Forumites who “dip in” to this particular thread.
Yes, the Besremi “shortage” was very much unexpected, but at least when I dashed up to LRI on Sunday morning the roads were fairly empty and I was in and out of the hospital grounds and pharmacy within 10 minutes.
I managed to speak to the Scan Department this morning as the accompanying paperwork says “you may not be able to drive” which isn’t a lot of help with use of the word “may”! They said that I would be okay to drive and to fly too, as I am off to Belfast on Friday with No1 and No3 daughters as a belated “Dad is really old, we should do something special!” event. So we shall be going to the Titanic Exhibition but, please, no spoilers, I don’t want to know what happens to the boat!
I have also got an Abdominal Scan booked for the 7th of July! At this rate I have a feeling I shall be glowing like one of the kids in the “Ready Brek” adverts!
Hi @HelRol, I hope you are as well as can be. I still manage (just about!) to work full-time but it does feel as though it is more of a struggle these days. In my case, I “self stab” on a Friday evening and then start to go downhill (quicker than a rabbit on a promise!) within a few hours. This feeling then extends over the next two days or so before I feel myself getting back to my usual merely knackered state over the following two or three days. Thankfully I am only on 1 jab (125mg) every 4 weeks but I don’t want to imagine what a bigger or more frequent dose would feel like.
Very definitely, you are not the only one! This forum has been a godsend to so many, with wonderful feedback from other “sufferers” as well as from the Forum Support Volunteers. The Forum allows me to express my feelings much more openly than I can to my daughters as (foolishly, I know!!) I don’t want to unduly worry them and, besides, they all have their own busy lives to lead.
As always, stay safe, take care, be kind to yourselves, and keep on smiling.
Good morning all, hope everyone is as well as can be. Just an update after yesterday’s visit to LRI for my brain scan.
The whole process was very quick and efficient and I was in and out within 90 minutes! Owing to what was about to take place, the first nurse I saw, he who was going to stick the cannula in me, took me away to a side room for the checks to be made that I was me and I knew what I was there for. He then proceeded to stick the biggest diameter cannula into the back of my right hand. Up until now I hadn’t given any thought to the fact that there were different sizes or colours of cannulas. I am now more aware as the one he used looked more like a cannon than a cannula! Then it was off to the scan room where more checks were made on me before I was invited to lie down on the skinny bed. A series of images were taken and then the contrast dye was administered and, flip me, didn’t I know exactly when that happened! Talk about hot flushes!! The palms of both hands felt as though they were instantly on fire but, thankfully, that was the only really noticeable effect. So at some point next week I shall try to make contact with the department and see if they have any results as my next appointment isn’t until mid-September!
Any road up, I’m off to Belfast in a few hours time so I shall say TTFN for the next couple of days.
As always, take care, stay safe, be kind to yourselves and keep on smiling.
Best wishes,
Jimbo165
PS: @Erica, I hope you are well and taking care of yourself.
PPS: @Gillyj, the headaches are still with me.
PPPS: @HelRol, I hope that your fatigue levels are levelling out some now.
Oh @Jimbo165 I keep on visualising that canula.
Isn’t it a weird sensation when the contrast dye goes in, yes, a real hot flush.
Enjoy Belfast and leave your headaches behind..
Yes, as always, take care, stay safe, be kind to yourselves and keep on smiling @Jimbo165 and all.
Hi @Jimbo165 and everyone else following this thread. I had my blood tests and check up but the results were not as hoped. Platelets have plateaued on Besremi . Again i was told the 125 dose was guess work for the equivalent of 90 pegasys. No news on the possibility of pegasys being in supply again. I have had my dose remain at 125 but now at 2 weekly intervals (instead of 3 weekly) and see how that does in a months time. May need to go up to 250 from there. My next main appointment will be with someone new to me and i understand he hosts a number of trials and so he may be my best bet for a decent drop in platelets. As i am already on a chemo drug for Chronic myeloid leukaemia i don’t think it is easy to get the balance right.
Good evening @Chrispy and everyone else, I hope that you are as well as can be and are keeping thoroughly hydrated in the current hot spell.
I’m sorry to hear that your platelet count has plateaued now, but hope that it isn’t too high in its plateaued position. I don’t envy you on the 125 dose at 2 weekly intervals as I feel properly rubbish from day 2 after my 4 weekly 125 dose, and that feeling lasts for between 3 and 5 days. My next dose is this coming Friday, the 4th of July.
I hope that your new Consultant can bring some fresh thoughts to your treatment and that there will be some better outcomes for you in the near future.
As for myself, my headaches are an almost constant companion at the moment but I was able to leave a message with my CSN on Friday morning and received a call back from her later in the afternoon. I’d asked if there was any news from my brain scan (performed the previous week) as my next clinical appointment isn’t until the middle of September. The long and short of it is that there appears to be nothing sinister or untoward going in my skull (except for my thought processes of course!) so I am no further forward as to the cause of my headaches. I suspect that they may well be “narcotic induced” thanks to the number and quantity of my daily medications. Oh well, I may see if I can buy some shares in a Paracetamol manufacturer!
As always, take care, stay safe, be kind to yourselves, keep smiling and drink plenty!
Hi @Jimbo165 Very frustrating not to have a reason for your headaches. I guess it is constant paracetamol which isn’t great. Like you i am on numerous tablets and never know what causes what.
Unfortunately the platelets are still over 1,000 from the starting point of 1,700 a year ago when i started treatment. I was told others had plateaued on the change to Besremi. Hopeful that when my supply runs out i can go back to pegasys and see if i can get it down.
Hi @Chrispy, blimey, your platelet count was very high, and still much higher than you would want them to be. I very much hope that the plateauing effect is a temporary blip and that the numbers will keep on coming down for you.
In the beginning of my journey down this particular road, my platelet count was on the wrong side of 1200 but they have now come down to the low 400’s or so, although it has been a “struggle” to get them down to that level and they have, at times, taken on the appearance of a roller-coaster, on steroids! I am sort of hoping (I think!) that I will be able to go back on to Pegasys in a few months time, once supplies have settled down. I prefer the simplicity of the Pegasys injections over the more complicated Besremi system but I will, as always, be guided by the medical fraternity. I think that I am even more tired on Besremi, something that I didn’t think was possible!
Hi @Jimbo165 How was Belfast? Always wanted to go to the Titanic thing there. We were teased by a possible trip into port on a cruise ship back from Iceland after storms and industrial action meant problems going anywhere else. Unfortunately stormy weather and a narrow channel into Belfast resulted in that not happening. Will mean we will take a trip there in the next 12 months i am sure.
Hi @Chrispy, Belfast was really good thank you, although the flights in both directions were delayed by an hour or so. We (Daughters No1 and No3) were lucky with the weather though, and the buses were very good, efficient, inexpensive (I am half Scottish!) and easy to use. Our hotel, one of the chain promoted by Sir Lenworth Henry (of Dudley fame!), was within easy walking distance of the Titanic Exhibition, even for an old fa*t like me!
The Titanic exhibition is definitely worth a visit if you are in the area, and takes 2 to 3 hours to make your way around and also for a visit to the adjacent SS Nomadic, a ship used to ferry 1st and 2nd class passengers out to RMS Titanic whilst it was in Cherbourg on her maiden voyage.
Good evening @Gillyj, @Chrispy, @Erica, and anyone else “dipping in” to this thread, I hope that you are all well and haven’t suffered under too many deluges today!
I am as okay as I can be and have a question for anyone who is, or has been, using Besremi injections.
I have been on them for several months now, on 1 x 125mcg injection every 4 weeks with my most recent jab two days ago on Friday the 4th of July. I find that my fatigue levels get worse as the next few days pass by and today (Sunday) has been a real struggle with staying awake throughout the day. Yesterday I felt very tired and “out of sorts” but today has been a tough one.
My question is: Does anyone else feel/find that their energy/fatigue levels are more severe than they were on Pegasys?
Fortunately I am off work tomorrow although I am back at LRI for another scan; this time an abdominal one to check on the state/size of my liver and my spleen. The last one of these was 18 months ago so there should be a good reference point for comparison purposes.
As always, take care, stay safe, be kind to yourselves (Copyright @Erica!) and keep on smiling.
Hi @Jimbo165 and everyone else- so sorry to hear about the fatigue- it’s a bummer!! I can’t answer that one about besremi- but the sooner they get the pegasys up and running the better for everyone I think! Although, would they still have you on besremi?
Hope the scan goes well and they find the correct organs
Look after yourself , put your feet up and watch Wimbledon!
Good evening @Gillyj, and everyone else, and thank you for your kind reply. Well the scan went okay, and without the need for any cannon, sorry, cannula, having to be stuffed into the back of my hand this time!
My liver and spleen haven’t increased in size since the last scan, which is good news, and the scan operator said that I “should carry on doing whatever it is that I am doing as it seems to be working for you”!
I’m still knackered though! and full of a headache!
Good evening @Gillyj and everyone else following this thread, I hope that you are well and have survived the recent heatwaves: it has been nice to not get rained on whilst out at work but, flip me, it’s been a bit too hot for comfort. As for sleep…the less said the better although I am hopeful for tonight (Monday 14th July) as the temps are a lot cooler now.
Now then, just a wee update on me and my Besremi/Hydroxycarbamide cocktail/combo. I had my injection (125mcg) as usual on the Friday evening and then proceeded to head “downhill” health wise over the next 24-48 hours. Hospital on the Monday for my Abdominal Scan (see above message), then back to work on Tuesday. Several colleagues asked how I was, so clearly I wasn’t looking too good. Wednesday I felt worse but still carried on working, but was so tired and achy. By Thursday I was feeling back to my normal self (which isn’t saying much!) but my headaches were back with a vengeance. It would appear that I can either feel rubbish, or have a headache, or, as a special treat, both at the same time!
Here I am, some 10 days post Besremi jab and I feel okay-ish physically but quite “fragile” emotionally. I could be forgiven for thinking that life, at times, can exhibit signs of unfairness!
On a different but semi-connected topic, one of my heart medications (Nicardipine) is currently on restricted supply with no date offered for when supplies will resume.
As always, take care, stay safe, be kind to yourself and keep on smiling.
You show the the cycle that you go through so clearly @Jimbo165 including the emotional ups and downs and it is so true that life can sometimes feel so unfair, however nobody actually said it would be fair.
Your headaches must really drag you down.
Do your medical team know your cycle?
I am waging a battle with mosquitos at the moment, they are winning and they are not playing fair and have the ability to turn their buzz off.
My ear currently resembles a cauliflower ear and does it itch.
Really look after yourself
Oh @Jimbo165 it seems so unfair what you’re going through at the moment- as @Erica says have you spelt out how bad things are to your team looking after you?? I do hope the next few days improve a bit
@Erica we’ve got a wasp issue but no mosquitoes- not sure which is better! At least the wasps don’t attack my ears!
apart from the obligatory fatique!
- good luck 
- think the technician was a bit mean with the big cannula!
and full of a headache! 
