Twice now have been to St Thomas`s and two different consultants recommended I be started on Plaquenil. One a lupus specialist and the other last Tuesdays Hughes specialist, On Tuesday was given a form by Hughes Specialist and her words were "you could take this to hospital pharmacy, but always really busy, or you can take it to your GP and he will prescribe it for you".
So on seeing how busy St Tomm/Guys pharmacy was and having our 11 year old autistic son with us (he doesn`t like to wait) we made the decision to bring the form home to GP.
Wrong!!!!!!!! Cos he still doesn`t want to prescribe it.
My haematologist at Derby should be able to prescribe but I`ve spent most of the week on the phone trying to speak to someone at St Thomas`s who could maybe fax something through to Derby Haemo!!!!
Just to add to the comedy/farce I can`t get hold of the lupus nurses, the consultants secretary is on annual leave, Oooh and they wonder why you get headaches!!!
Does anybody have a number at St Thomas`s that gets answered or isn`t engaged? Could message it to me please!!!
So frustrated, None of this is St Thoms fault, my Gp is usually fantastic but even with letter from lupus specialist and form from hughes specialist he will just not write a prescription.
I could just go sit in a corner,cry (but got no bl***y tears), suck my thumb and have a pity party!!! Probably get stuck in the corner too!!
Sorry this is long but had to let off steam.
Take care all gentle hugs Sheena (jessielou) xxxx
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I presume that you will soon have your follow up letter from St T (I get mine within 10 days) to you and your GP. That will trigger your GP to prescribe. Lesson learnt I guess for us all to get first medication at the hospital pharmacy!!! (I know they have a ticket que system, last time I went I had to wait about 20 mins to get my prescription)
My GP will not adjust my plaquenil without letter or tele conversation with my specialist at St T.
Just a thought, ring the other consultant's secretary and ask if you could send her an email to be copied to both consultants, marked urgent, explain it as you have here. Somebody will help you, they may get your local hospital to prescribe it. Good luck MX
That is a pain, I know whenever I have to phone St.Thomas' they take forever to answer keep trying....so then you can advise them to phone your docs to get the ball rolling to be prescibed Plaquinil.
What happened to more patient choice? Isnt that what we are supposed to be getting now.....durr! This makes me so cross. What is the GP frightened of or is it just money? But never mind the patient after all thats what they took their oath about!!!!!
The best way to get your medication sorted, is to write to your consultant at St Thomas's, telling them your dilema. That way itl goes in your records. Tell the consultant the problems you are facing in your letter. I had the same problem with my old GP. I ended up changing doctors and finding one that understands. Good luck, and don't give up.
Jessielou, When my dose of Heparin was increased by St Thomas I too noticed how busy the pharmacy was so decided to go to my local hospital but they did not have enough in stock.had to wait for a few days and go back to collect. Asked for the yellow buckets to put used needles in but they said i had to get them on prescription and they could not provide them. Then when i wanted a repeat prescription my GP phoned me and said they needed to see me and to make an appointment. When I rang up to make the appointment, they said I could not get an appointment for a couple of weeks because I had to see a particular doctor who was on holiday and she was the only person who deals with 'Shared care'.I did not have a clue what that meant. So, i finally saw her and told her that i had to wait to see her before i could have my medicine. She told me that i could of seen any GP and that this was not true. I asked her to explain Shared Care-this apparently means that they have to write to the Health Service to get permission to prescribe the drug because it is so expensive and of course the budget comes into it !!! Money again !!! But what a waste of time. they have to provide the drug so what was that all about. like you said its frustrating and we already have a headache so we don't need any further stress or pressure. I feel like I have to fight and justify everything regarding APS.especially where I live-thats why i am prepared to travel regularly to London although it drains me and makes me even more exhausted because of the long journey.
poor you. I hope by now that you have accessed your Plaquenil, and have actually started on it, towards a future good effect. After many symptoms, then blood tests showing positive ana and aps at start 2007, it took a year to be given Plaquenil by a rheumy, though a dermy had recommended it. Still GP (aussie) puts negative to lupus and aps, though eye specialist here said aps positive through my visit to Prof Hughes. As you know, Plaquenil does such a great job. Shopping for a new GP, not an easy thing to do where I live.
Honey my heart aches for you. I had the most amazing GP who would give me whatever I asked for once I had seen them at the hospital. He totally trusted me. He had been my GP for 20 years when I got my diagnosis so had seen me through a lot of different ailments and was, like me, quite relieved to be able to put all the symptomes together and put a name on it. Now that I have had to move into more suitable accommodation (ground floor single storey) I have had to change GP. The new one did try to give me a substitute med for one of mine and I just told him I wasn't having it. so he gave me the original drug. I haven't had to introduce anything new yet so I am dreading it.
I am crossing everything for you and praying that you get it soon
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