Peg problem.

[Exeter21]

Today I had my consultation following bloods with my local Haematologist at hospital. All results are in range on my Peg Interferon 45 monthly. I am out of UK for 9 weeks & consultant had issued prescription for 3 syringes.

I mentioned the shortage & was told no problem locally at my hospital. I drive to my hospital an hour away where my prescription is to be collected. Told by Pharmacist I can only have One . Explained I am out of Country & have no medication . Told to sit & await a decision from Pharmacist. After another 45 minutes wait told cannot reach Consultant so cannot be issued.

I then walked to Haemotology Dept . & fortunately Consultant still on duty. Stand off between her request & Pharmacy . Lots of online messaging.

Eventually my syringes approved . However I was told it is because it’s 90 syringes so 45 wasted on my treatment. !!!!

It has taken 2 years to get bloods stable experimenting in doseage & 45 is the dose my body manages.

Made to wait again in Pharmacy at hospital feeling like a criminal for needing my medication due to inject tomorrow.

There has been no notification from Haemotolgy that my prescription is a problem. However after this problem today the consultant informed me that patients on Interferon are going to face problems.

So left hospital after 3 hrs wait , pretty deflated that my treatment that works well may not be available much longer . What a complete mess our World has become . World blood shortage plus medications.

Julia 🙈

[Solyesh]

Sigh - yes I was without Peg for 2 months (after finally having achieved all bloods WNL for first time in 10 years) - finally was able to get prescription filled but they also only gave me one syringe and told me to come back in two weeks for second - came back and this time they gave me two but from new prescription so still down one - constant back and forth. My MPN specialist is pushing to get approval to use Besremi for ET as the Peg supply looks to be a problem - first go around was rejected by national health service but we are trying again...

[Exeter21 in reply to Solyesh]

Wow I feel better now it’s not just me getting hassle. I was told that being on 45 monthly instead of the full 90 syringe was stopping someone getting treatment. I could actually have gone berserk at the way pharmacist went on at me. Consultant was great but did not appear to know there was a shortage until told . 🙈

[Hopetohelp in reply to Solyesh]

Let’s hope by keep trying we will have the alternative

[Exeter21 in reply to Hopetohelp]

Let’s hope we can keep interferon . I am sure some big Company in Pharmaceutical s could get some out for big money to help our crisis .🤗

[Spanelmad]

Sorry to hear about your peg experience, sort of not surprised after reading Maz post on the shortage today. I'm just hoping that when my results come in next month that in swapped to rux ,although I still have 2 syringes in the fridge.

[Exeter21 in reply to Spanelmad]

Spread your syringes they will be like gold dust. I find it sad as I had a battle on other drugs before everything became perfect again on Peg . 👌

[Hopetohelp]

Oh how stressful for you! They must be able to sort something out surely! Even if they tell us how to safely use the syringe so we don’t waste any and use it twice like some here have mentioned. A lot of us are in the same boat so let’s hope they get it sorted

[Exeter21 in reply to Hopetohelp]

Let’s just hope as it’s a great treatment 👌🤞

[hall2]

I’ve been doing really well on Peg 90 mcg per month. I had my consultation last Friday and was told they can’t get the 90 mcg syringes at the moment so they’re moving me to 135 mcg every six weeks. I’m still waiting to hear from hospital pharmacy I haven’t any left.

[Anag]

I was on Besremi which was the first medication ever to bring me down into the PLT normal range in 15 years and I felt good. Eventually, I started having orthopedic problems which exploded into extreme pain and no ability to walk properly or bend my wrists and fingers or even lift my head. Every single spot on my body that had an orthopedic problem in the past revisited me in a bad way. I finally ended up stopping Besremi and in two months, the thrombocytes were only up to 500. Perhaps there won’t be a problem with you at all. During your nine week trip even if you’re able to take just one syringe with you. Then you can restart when you come back. Meanwhile, trying to the syringes every second week by a friend or family member to make sure you have enough in the future.

unfortunately I’ve stopped the Besremi because even after stopping and starting a few times, and reducing the dosage down to minimum, my body was still going nuts. I’m back on anagrelide which causes me heart problems and I can’t take HU because it caused me severe neurological symptoms Thrombocytes are now at 650 despite the two and anagrelide capsules daily. I am terrified of taking a third one. Let’s see what the hematologist will say on September 5. 🙏🙏🙏

I have witnessed shortages before for other medications) for up to nine months!!! Therefore I always try to have enough of the fairy serious medication for my family for a couple of months.

Please ask your doctor about that. Most importantly, do not get upset, because that drives our bloods nuts. 🙂

[Mortysdad in reply to Anag]

❣️ your last line! A great reminder for us all, best of luck in our continued journeys

[Exeter21 in reply to Anag]

Many thanks . I am off to watch my son competing in Americas Cup Barcelona on the GBR boat INEOS . planned for years I never thought for one moment no meds . I have one 👌 Julia .

INEOS sailor Ben Cornish for GBR Americas Cup , my son .

[Anag in reply to Exeter21]

BRAVO!!!! Have a GREAT TIME!! 🙏🙏

[RoundTheWorld in reply to Exeter21]

Hope you are feeling well despite the supply issues - thought of you as your son and team were in the news tonight. Congratulations to them - what a proud mum moment for you!

[Exeter21 in reply to RoundTheWorld]

Many thanks I think my platelets will be through roof the stress of watching all this . Next NZ we race 12th Oct. Trying not to think of Interferon problems with supply 😂👌🇬🇧🏆

[DJK12 in reply to Exeter21]

Fantastic to see the result on the news last night. What a crew, what a boat! Looking forward to seeing the next races. Wish the BBC would do a documentary on the America Cup.

[Exeter21 in reply to DJK12]

Thanks yes amazing result for Ineos & my son crew onboard for winning race . Louis Vuitton an iconic Cup to win . Next battle NZ for Final of Americas Cup starting on 12th. On YouTube again under Americas Cup but hopefully tv pull stops to get it on now realised their Country is important & achievement amazing against rest of World boats beaten . 👌. Downside trying not to worry about lack of Peg for my return . It really is playing with people’s lives just as it was working well on me 👌🇬🇧🏆

Americas Cup photo after win of Louis Vuitton Cup in Barcelona. My son holding trophy 👌

[JustKeepSw1mming]

Oh Julia, so sorry to hear. It's hard enough to find a treatment that works. I hope this will get sorted. I wish you a great trip and take care of yourself.

Mary

[Exeter21 in reply to JustKeepSw1mming]

Thanks Mary yes very disappointing when you find medication that works 😱👍

[Ladygolf]

Hi Exeter 21. I was through a similar situation last spring when the government cut me off peg because they did not feel I was benefiting enough from the drug. My consultant appealed citing the slow acting nature of peg but the process takes time. I had one syringe left. Here in Canada only 180 mg. syringes so like you I was on 45 and wasting a lot each week. The only solution was to buy extra needles so I could get 4 doses out of the vial. Using a new sterile needle each week is safe and I had no problems whatsoever. I suggest you do this regularly and try to accumulate a reserve of syringes for emergencies like this current shortage. I know that doesn’t help much now but have a friend or relative keep trying to pick up more syringes while you are away for your reserve. Have a wonderful trip and good luck to your son.

[Exeter21 in reply to Ladygolf]

Well done & thanks for informing me as I read on our site we should not re use opened syringes But if it means getting our dose I will discuss with Haemotology . Thanks Julia 👌

[DougyW]

I hope this shortage will not continue too long. I've delayed picking up my next batch as not sure I'll be able to use it and don't want 3 syringes wasted. When I asked I was told I had to take them all as that's what the prescription said and the Lloyd's pharmacy at the hospital couldn't store my medication. What ever happened to common sense.

[Exeter21 in reply to DougyW]

Wow you were lucky . Exeter are treating me as though I am wanting free gold 😱 on one syringe a month . Let’s hope it improves again . Keep them in your fridge me may all be lining up at your house for them 😂😂👌 Julia .