Crazy 😳

[CecilyParsley]

Well I am gobsmacked. My hubby picked up my prescription today, sent to me by the Rheumatologist. He returned with three bag fulls? The Rheumatologist had prescribed items for the three in one mouthwash and a bottle of Cochicine. The Nystatin will not be in until tomorrow but there were 25 boxes of antibiotics and 15 boxes of prednisalone!!!! The pharmacist expressed serious concern about taking the items mixed in a mouthwash and said her advice would be just don’t do it. I cannot wait to find out how many bottles of Nystatin he has prescribed . It is pure madness

[Hidden]

Pharmacy now out of stock 😉

[CecilyParsley in reply to Hidden]

It is utter madness. All these boxes have expiry dates. It is obviously a years worth of mouthwash but….. 😬

[Tiggywoos in reply to CecilyParsley]

Worth hanging around outside boots you’ll make a fortune 🙈. The 👩‍⚕️ gave me 56 antivirals which made me wonder if she was planning on leaving 😳. Maybe your rheumy is planning on making an exit too ! Big hugs 🤗 xxx

[stiff19 in reply to CecilyParsley]

Yet my OH who has drugs for life they will only do a month at a time 🤪 and god forbid he puts in for it a day or two before due, crazy indeed.

[GloomyEeyore in reply to stiff19]

Same here. I can’t put in for my repeat prescription even a day early. Each is counted out so I have the exact number of tablets for 28 days. Xx

[CecilyParsley in reply to stiff19]

Exactly at my surgery I have to order exactly a month after my previous order. This is something I have never had happen previously. I was gobsmacked xxx

[stiff19 in reply to CecilyParsley]

I bet you was, it’s just all a bit worrying at times the way things are going 🤷‍♀️🤗xx

[Poshcards in reply to stiff19]

Me too, gp will only relase 4 weeks worth!! x

[chrisj in reply to Poshcards]

Mine too

[Tiggywoos]

On a serious note the pharmacist said to me last week so many mistakes are being made she said I don’t know what the drs are on 😳xx

[Treetop33 in reply to Tiggywoos]

Tired maybe?

[Tiggywoos in reply to Treetop33]

Mine only works on a Thursday and it’s all done by email and text . He’s young so maybe that’s the new way of working 🧐

[Roarah in reply to Tiggywoos]

In the us my specialist only have one day a week seeing patients in clinic then they work sometimes up four twelve hour shifts with hospitalized patients. This is likely happening in the uk as well.

[Tiggywoos in reply to Roarah]

Ah sorry no meant GP not consultant 🙂

[Insomniacette in reply to Tiggywoos]

I've been told GPs now have second and third lucrative freelance jobs working partly in the private sector. I don't know if it's true but I'd love to find out if most NHS GPs now moonlight privately. I was told the reason for rubbish NHS GP availability is because they do one day NHS to keep training and insurance costs low as NHS covers it, then moonlight the rest of the week elsewhere making more money... If anyone can verify I'd be interested to know if this is true.

[CecilyParsley in reply to Insomniacette]

My GP has a laser clinic private practice.

[Insomniacette in reply to CecilyParsley]

It's a scandal that the NHS is being used in this way. Sigh.

[CecilyParsley in reply to Insomniacette]

It is exactly what the Government want. They are privatising by stealth already. Our NHS is under resourced and underfunded not to mention under paid. It must be so demoralising for staff trying to make a difference.

[CecilyParsley in reply to Roarah]

Sorry Roarah a message came up in my emails about a comment you made about Nystatin..I could not see the whole message and I cannot see it here. Yes I do have APS antibodies but only take aspirin for it but thank you so much for the warning xx

[Roarah in reply to CecilyParsley]

I took it away because then I could not remember if it was you who mentioned APS . Glad it is not contraindicative for you. Hope the mouthwash helps!

[CecilyParsley in reply to Roarah]

Ahh thank you so much, I am always so thankful for advice. Xx

[JCZW]

Morning CecilyParsley that's sheer crazy. I went to put my repeat prescription in for hydroxychloroquine yesterday and was informed that I was 3 days early and they wouldn't let me do it. They told me that I have to apply in 3 days time they said they had rules and it was to avoid people stock piling. My reply was REALLY !!

[BonnyB in reply to JCZW]

I had this with my holiday coming up, I decided to get organised. I have also asked for 3 months worth of hydroxy but been refused- just a pain keep ordering and going back x

[JCZW in reply to BonnyB]

It is worry that we don't need. Xx

[CecilyParsley in reply to JCZW]

Yes the pharmacy have just done that with me. I explained that one of my Levothyroxine tablets crumbled to nothing as I took it out so I needed my repeat meds a day early but they refused and yet the Rheumy prescribes a years worth of medication that will obviously be out of date before I can use it all as I don’t need it daily, just when I get mouth ulcers.

[BonnyB]

You'll have to move house if this keeps happening😀

[CecilyParsley in reply to BonnyB]

Honestly I could not believe what I was seeing. Thank goodness I have a walk in cupboard. My airing cupboard is now the drugs cupboard lol xxx

[KayHimm]

That is 😜, Cecily. Our insurance companies in the US won’t let prescriptions be written for more than three months. The NHS must have a limit too, right? Could there be a mistake? A couple of 00s maybe?! 😅

The visual of your husband coming back with bags of drugs is pretty funny.

You might want to call the doctors office before opening the packages.

Keep us posted on the mystery 💊!

xk

[CecilyParsley in reply to KayHimm]

When you think of the way they limit antibiotic use, for good reason, I now have 25 boxes to use as mouthwash?? It must be a years supply which does not bode well for the next appointment. Yet I have Colchicine in an exact amount for two months?? Xxx

[Salzer in reply to CecilyParsley]

Must be a mistake Cecily! You said the consultant didn't seem on the ball the day you spoke to him. I wonder if he wrote the wrong thing on the prescription? I'm surprised the pharmacist dispensed them all without checking with you or the doctor first. There's no way my pharmacist would give everything at once. Well, least we know where to come if armageddon happens and we need antibiotics 🤣

[CecilyParsley in reply to Salzer]

I don’t think he could even see the ball lol. It is just crazy. I have checked with the pharmacist and they have confirmed that that was what he prescribed. Xxx

[Pumpkin2009 in reply to CecilyParsley]

Totally crazy.

Healing hugs.

[CecilyParsley in reply to Pumpkin2009]

I have six bottles of Nystatin to come tomorrow. How much mouthwash does he really think I need ?? Xxx

[chrisj in reply to CecilyParsley]

Have you queried it as to whether its a mistake???

[CecilyParsley in reply to chrisj]

It seems it is a years worth in one prescription…madness

[chrisj]

I had such problems with the delivery service from the pharmacy (and the pharmacy itself) next door to our gp practice, that when I saw ads for pharmacy 2u I registered with them. They send out reminders and have been the most reliable service I've come across. I'd highly recommend them.

[Villagelife]

It seems very wrong, I'm sure taking that amount of antibiotics will do more harm than good. I cant believe the pharmacist actually gave you all that medication without questioning the rheumatologist.

[CecilyParsley in reply to Villagelife]

I won’t be taking it as such. It is a three in one mouth wash. You swill and spit four times daily. She told me to call the Rheumatologist? Like that would go down really well.

[Villagelife in reply to CecilyParsley]

Sorry, I read it wrong I thought you had the mouthwash and antibiotics 😬

[CecilyParsley in reply to Villagelife]

An easy mistake. It is a three in one mouthwash comprising of soluble Prednisolone, soluble antibiotics and Nystatin. It really does ease the pain and the duration of mouth ulcers but I am completely shocked at the quantities he prescribed. Previously my GP has prescribed ( on his instruction) the pred, Nystatin and capsules of antibiotic that I have to pull apart.

[Villagelife in reply to CecilyParsley]

I understand now thank you, I thought everything was separate. Glad it works.

[TGSHJ71]

I was 3 days early for one of my repeat meds , so "she who has to be obeyed upstairs " sent a message down to the receptionist to ask me to do it in 3 days time.I actually had an appt with my doctor next day , so I mentioned it to her, she raised her eyes to heaven and gave me my prescription

The system cannot cope with anything out of sequence

Hope you sort your meds out , I always ask the pharmacist even after getting my prescription from the doctor, is there anything xtra I need to know about this script. unlike us "lupies" doctors do not read the small print !!!!! on the meds.

Take care

[CecilyParsley in reply to TGSHJ71]

Thank you well at least I won’t run out xx

[Tiggywoos]

Fancy swapping some pred for gabapentin 😉😘! That is absolute madness and in all seriousness good job you aren’t of the mindset to sit outside a certain chemists and flog them! Big hugs 😘😘xxx

[Tiggywoos]

How funny CP that this has popped up on my feed today 🤣. Have we got forum gremlins ?? X

[CecilyParsley in reply to Tiggywoos]

How odd. Still I would loooove more Garbapentin. Since starting physio rehab my nerve pain is off the chart and my morphine doesn’t touch it. I need to reduce the morphine and increase the Garbapentin. I now have a wardrobe shelf full of prednisalone, ludicrous really 🙄 xxx

[Tiggywoos in reply to CecilyParsley]

Bless you I’m so sorry about crappy nerve pain 😢. The gab and Pregabalin both made me really depressed and I couldn’t deal with it . Well done you though on the physio rehab . Sending a big hug chick 🐣 xxxxx

[CecilyParsley in reply to Tiggywoos]

I am trying really hard not to react to the rehab physio who comes behind me as I sweat profusely with pain from my knees and hamstring and says “ oh good we are making you leak. No pain no gain” 🤯🤬. Honestly 👿💩. How are you lovely? We need a catch up xxx

[Tiggywoos in reply to CecilyParsley]

No pain no gain!!!!! 😡 id probably in my head knee him in the groin 🙈.. i had physio who said get used to the pain nothing you can do about it 🙄. My friend had the same physio and we named him the bicep 💪 and said he was prob too busy eating 🐓 to learn about rare AID.I’m ok (well breathing ) thank you for asking 😘.

Burning feet thing is exhausting but got phone consult with a Dr Cregg in June (he was the only person I could find in whole of UK who has interest in Erythromelalgia! Any golden nuggets of hope I’ll keep you posted .

Is physio helping at all ? Big hugs xxxxx

[CecilyParsley in reply to Tiggywoos]

It is a woman physio, very jolly hockeysticks and has a grudge with me because I refused point blank to do squats 🤬. At the moment no I am so painful so no gains but hopefully by the end is six weeks I will see a difference. Oh that’s great about you finding a consultant with a real interest in Erythromyalgia. I am convinced I have it my feet burn incessantly even when they feel freezing cold. Please keep me posted and good luck xxx

[Tiggywoos]

I’m so sorry it’s not helping as I can imagine a session uses up valuable energy that ideally we’d be preserving 🙄. At least if you’ve done your 6 weeks they can’t say you didn’t try . The burning is hideous isn’t it 😩.. I miss a nice long bath or shower . America seem a lot more switched on about treatments for Erythromelalgia . I’ll keep you posted but as always my expectations are low . He’s an anesthetist so surprised insurance company we’re ok about paying 🤞. Sending lots of love and healing for pesky painful knees xxx

[CecilyParsley in reply to Tiggywoos]

At least so far I haven’t fallen over or wet myself so that’s a huge bonus 😂. I am proud of myself for ignoring the awful physio’s attitude. Rosemary got me to the hospital five minutes late on Wednesday. I entered the room quietly and went to my chair to start the warm ups and in front of everyone she shouted you are late so you can’t do the warm up, go on the treadmill instead 🤬. On Monday we were sat waiting for fifteen minutes for one lady. I rose above it but I have another five weeks to manage it 🤐. It is great that anyone is interested in helping us isnt it? I hope that the anaesthetist will give you advice to bring back to us and actually help you xxx