Update one GCA/PMR

[Nonameme]

So finally had a referral from ophthalmologist to Rheumatologist on 31st December as ‘urgent’ apparently within 4 weeks -still waiting. Sight is now badly affected and having gone from 60to 20 since August cannot go lower at present as alll PMR symptoms return although not officially diagnosed as yet.

I also am suffering badly with Gastro problems with a provisional Crohns diagnosis which my GP has declined to address using his let’s wait and see approach. and having taken Pepto medication whilst in the US because I cannot tolerate any PPi medication especially now that I am on Prednisone. Which left me in great pain black tarry motions and bed and nappy bound for many weeks.

This in turn worsened my bowel and bladder prolapses and I have been left suicidal as no one wants to consider me as a whole person rather than just a specific condition.

My question now is how do I deal with stress?

Recently last October my Amitriptyline for Neuropathy was doubled to 2 x 10 per day however it took me a while to realise that although this was stated on repeat prescriptions I was only being dispensed one pack of 28 tablets. When I realised this and documented it the pharmacist attached to my GP Surgery was very dismissive and just allowed me 2 packets on 23/01 with a note on my repeat cannot be requested until 20/02. Then it fell off my record completely. I then apply for repeat on 14/4as we have to wait 7 working days for collection. I added a note explaining the maths. Today my sister collected my medication as during an appointment she was told it was ready. No Amy and new prescription now stated last dispensed 23/01 canno request until 23/03!

I telephoned and was then told a prescription will be ready tomorrow! I just can, t cope with this any longer. My GP SURGERY does not acknowledge my GCAand it does not appear on my records.

Because I have type 2 diabetes they acknowledged I needed better control and decided I needed Libra sensor which was ordered and I had an appointment to have this explained and fitted. Half way home it fell off subsequent phone calls said I had to communicate with Abbott the makers directly! They were not in the least helpful.

And finally not medical 3 times I have cleared my understair cupboard in order that Eon can fit a smart meter and today for the 3rd time they failed to show up! I just cannot take all this stresss and I have no family or friends to turn too. In theory I am my sister carer and she still expects the same level of care. Social services are not interested age concern social provider all have no offers of help I cannot cope for much longer and finally last eye dept appointment forgot to give me a blood test form for test day prior to next appt and they either don’t answer cut me off or just say closed. I am beginning to get the message I just don’t matter anymore.

Sorry for long moaning post but I had to get it out of my head

[suzy1959]

I am so sorry to hear what you are going through. Please know that you really do matter but I can understand why you seem to be getting messages to the contrary.

Fighting for what we need is so exhausting, especially when you are already ill. Can you complain to the practice manager as so much of this seems to be down to your GP practice? You need to mention how desperate you feel and if that includes feeling suicidal you need to tell them this as they then have to respond. This is not acceptable care at all. You deserve much better.

I don’t usually say much here about dosage etc because the experts are much more experienced than me but I would say do not reduce your Pred. It possibly needs increasing , especially as your stress levels are so high.

[DorsetLady PMRGCAuk volunteer]

Sorry to hear you are going through so much - does your GP surgery have a practice manager who could get to grips with the different issues by looking at your records re missing information re condition, medication and delayed appointments.

As suggested, you probably do require a bit more Pred, but that obviously needs a GP’s input…

As for dealing with stress, some of the suggestions in this link might help, but you do need professional input to sort out issues which unfortunately seems sadly missing -

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

I'm so sorry you are trapped in this spiral of despair - go to your GP practice and demand to speak to the practice manager. I know it requires a lot of effort and you feel it is too much but someone has to care for the carer. There are charities but you have to know how to access them. There will also be local self-referral mental health services - google or look at noticeboards in the GP practice.

[August7]

I am so very sorry to hear of all the rubbish you are having to put up with. Beyond horrible. You are in the right place. There are good souls with huge experience who can advise you. Sending all my very best wishes and a massive hug..stay in there 🤗x