As many if you know, there’s a worldwide shortage of Peginterferon. I only have 3 syringes left and our local hospital only receives, 1 syringe a month. I am aware the NHS have confirmed other meds be made available, and I was wondering if anyone has changed over, and to what?
I have an appointment next week with a haematologist, and I would feel more informed going into this appointment with any shared knowledge from the forum.
My apologies if this isn’t the correct olace to post. I’ve not been able to find my usual thread.
I think I’m a little anxious about it, as I’ve had good redults with Peg. Ive been taking it for a year now, and my levels are good. We are now at the stage of finding a maintenance dose too.
Thank you for sharing the recent update.
I hope someone who taking Besrimi will comment on their experience, too
Hi @Lynd I can understand your anxiety as you are happy with and had good results with Peginterferon.
I always think the unknown is scary. @Ali_BloodCancerUK has given you a brilliant response and good news that Blood Cancer UK are up to date.
I hope someone will be able to share their experiences with Besrimi for you.
Please do let us know how you get on.
Be ever so kind to yourself and thanks for raising this issue.
Lovely to hear from you @Erica, you always send the loveliest of messages.
I’d hoped, my consultant would have already spoken about it. His team have just brushed it off. I honestly feel, they hadnt realised the severity of the shortage.
Good evening @Lynd, and everyone else following this thread. I hope you are coping as well as possible.
I have an appointment this Friday at LRI and will hope to get some answers to the very pertinent questions that you have posed.
It is, as I have said on other threads, a worrying situation and it is entirely possible that the medical fraternity are not fully aware, or appreciate, the additional stress that this shortage may induce in some Pegasys users.
For myself, I am doing my best to not dwell on it, although I am now “out of” syringes with one due this week; not an ideal position to be in.
Such is life.
Take care all, stay safe and be kind to yourselves.
I most certainly will give an update once I’m home from my appointment on Friday. One other issue I have had, since the shortage “struck”, was in collecting my last two injections. Prior to the shortage I used to dash the 15 miles from home to the Hospital Pharmacy of an evening time, so as to avoid the traffic and also to keep the drugs chilled and back in the fridge within the 30 minute time window. However following the shortage I had to go to the Haematology Ward during “normal hours”, i.e. between 9am and 3pm, so I ended up having to book a half day’s annual leave.
@Jimbo165 I would have said that a Haematology Ward’s hours are 24 hrs a day.
I would begrudge having to take half a day’s leave.
Be ever so kind to yourself
I have to collect my prescriptions from the oncology clinic pharmacy during clinic hours 9-5. However, they have left it at the hospital pharmacy for me, which is open at the weekend and later hours too. I wonder if your hospital could offer this for you
my last pick up was from the inpatient pharmacy as normal but they will only give me one at a time. i need to pick one up next week so fingers crossed.
Good evening dear @Erica, oh believe me, I was very much like a castrated pig, very disgruntled, at having to use a precious 1/2 day’s annual leave for this purpose, and yes, I agree that ward is open 24 hours a day, 7 days a week. Sadly the restriction was put in place for reasons that were not adequately explained at the time, but I did make my feelings clear.
Hi @Lynd, I used to collect from the hospital pharmacy, situated in the main car park, before the shortage made its unwanted presence felt, and if I timed it right (Sunday early afternoons were a good time too!), I could get in and out of the car park in under 15 minutes, which avoided any charge! Bonus!!
Hello again @Chrispy, hope you are well. I sort of understand them limiting the supply to individual patients but feel that sufficient syringes should be supplied to last between hospital appointments. I know that others will have more difficult transport issues than I do, but it is still a 30 mile round trip for me to and from LRI.
However, it is what it is and is not the fault of the Haematology department.
Hi @Jimbo165 . It does seem a bit much with such a long journey to make you take time of work. This must effect others at your hospital too. Hopefully they will manage to change this for something more convenient in the near future. I am lucky enough that i can walk to the hospital and i am not working but your trip etc must add to the stress.
All the best with your appointment and hope the headaches have eased.
x
Thank you. Sadly the headaches are still there but, as we all do with our varying symptoms and side effects, we sort of get used to it and it almost becomes a “background white noise”. I saw my GP last week, at my consultants request, to discuss my headaches and the GP will be recommending to the consultant for me to have a CT or MRI scan of my noggin, which will be interesting as there will be very little to see in there!
Jimbo 165, Chrispy Lynd I just want to say that sounds very stressfull and I hope you all get clarity soon. Hope your headaches get sorted soon and you get some relief Jimbo 165. Just so you know when I had an mri of my noggin , my head was placed in a plastic cage to keep it still for better imaging. I just kept my eyes closed. It’s not uncomfortable an mri just very noisy. once again I hope you all get answers soon. Best wishes Liz59
Good evening @Liz59, and everyone else, hope you are all well and have managed to keep warm.
Thank you for your kind words and advice on what to expect should it get as far as the scan, although it may be more a case of it being a “space invader”!
Take care and stay safe all.
Best wishes,
Jimbo165
Hi @Jimbo165 and everyone who has followed this thread.
@Jimbo165, I hope all went well for you today, at tour appointment
Update from me… I received a call from the pharmacy, and they had managed to get 2 syringes for me. On collection they gave me 4😯 I know the struggle continues, due to shortage, but I’ve now enough for Christmas, which is comforting.
It would be great to hear from others, going through this, so we can support each other through transition to new meds.
Good afternoon @Lynd, I’m really chuffed to hear that you have been able to get sufficient syringes to see you through the festive period.
I have put a post about today’s appointment, and the outcome, on another thread on the Forum, titled “Essential thrombocythemia (ET) diagnosis finally sinking in”. But in a nutshell (possibly a nutcase!) I’m now off of Pegasys after tonight’s jab, and starting Hydroxycarbamide tomorrow, with a return to hospital in two weeks time.
I will, as always, keep the gang updated as to how tings go.
