CAN'T WAIT TO ACTUALLY SEE THE NHS RHEUMATOLOGY CLINIC!

[Garnacha]

Sorry for the long winded post, I haven't posted for a while as I was feeling really fedup and couldn't be ar#ed if the truth be told (sound like Nessa from Gavin & Stacey :):))

Some of you may remember I had this really nasty sore on my leg near my knee which was getting worse and worse aswell as bigger, it was so painful even a breath of air on it hurt. After numerous e-mails with photo's to the Dr's (none of which ever saw me face to face) and various antibiotics / steroid creams etc I was referred urgently to dermatology. See photo, but not if you've got a weak stomach, it did get worse than this.

Urgent was still a 6 week wait, I was in so much pain that I managed to see the medic at the doctors who booked me in to see the nurse to have it dressed. She used a manuka honey dressing, omg, within 2 months it had practically cleared up, I saw the dermatologist within this time who took photo's and was contemplating a biopsy, then said to see how it goes with me continuing with the manuka honey dressing, at my last appointment with him he said that it all seems fine now but for belt & braces he'd ring me in 6 months.

I've been tapering off the steroids whilst waiting for the addition of Lef to take effect which was added in March this year alongside the Etoricoxib, Hydroxy, Methotrexate & Gabapentin, I finished the steroids completely at the end of August and the pain which had already started to come back just got worse, after 2 weeks I contacted the consultant and arranged a f2f appointment, after discussion we decided to keep taking the Lef but to increase the dose from 10mg to 20mg, I again explained the after effects I have with oral MTX and how I feel sick for up to 6 days and terrible brain fog even slurring like I'm drunk, he said for me to change oral MTX to injection.

He wrote to my GP (copied in myself) on the 15th September, I knew it wouldn't be instant that I'd hear anything but by last Friday 24th rang the surgery, the lad on the phone looked up my record and saw the letter hadn't been sent for the Dr to see! I asked if I'd be contacted to show me how I inject myself and he replied that I'd have to go on the waiting list for a steroid injection, what? I'm not having a steroid injection, he replied sorry but we've got 16 - 17,000 patients, I said if letters aren't read someone could have an urgent letter regarding cancer and no-one will have read the letter. Couldn't get any sense out of the lad so said I'd ring to speak to the medic on Monday who also has Psoriatic Arthritis and uses the injection, I'm sure he'll be able to help.

That afternoon had a text from the surgery to say an appointment had been made for me to see the nurse today at 2.30, I also had another text on Monday to say there is a query with my prescription and a telephone consultation will be made via another text, haven't heard anything but as I was going to the surgery today thought I'd ask then.

Happy to say I was able to fill up on fuel on my way to the nurse, when I get there she asks me what she can do for me today? I've no idea I replied, had a text to say I had an appointment with you, I told her about the change from oral MTX to injection and I assumed that's what the appointment was for, she said she's never done this and the consultant would have arranged it, when I said I'm not on the NHS yet and have a 77 week wait I'd seen the consultant privately, she said oh I can google what you do! Then said I should be able to find a video on youtube on how to use the injection! honest to god you couldn't make it up. I said about the other text I'd had re a query with my prescription and she said that could be what the call was regarding, when she checked the system the call hadn't been actioned, she's managed to get me a telephone consultation tomorrow with an actual Dr (I thought they were all extinct :)) and I can bet my bottom dollar he'll ring and ask how he can help and won't have read the letter from the consultant.

At my last blood test, I had a letter to say I needed a followup test in December for my liver function, my consultant doesn't have access to NHS records as he only sees patients privately now, I've managed to get a copy of my blood tests in the past which they are reluctant to give, I was told I had to sign an authorisation form for GDPR, this I did. Today I asked the receptionist for a copy of my last test results as I think the consultant will want to see them due to the liver function result, especially as there's an increase in leflunomide, at first she couldn't find any blood tests for me, then said we haven't had the results back yet, YES you have, I've had a letter saying they want to repeat my liver function test, eventually she found it so I asked again for a copy, oh you have to fill out an authorisation form, I ALREADY DID about 2 months ago, but you have to fill one out for every blood test result!!! This isn't under GDPR this must be the surgery's own policy I said so go on give me another one, I filled it in putting I'd like a copy of my blood test results indefinitely going forward. Gave her the form back and said can I have a copy, no, it has to go upstairs to the secretary first!!! AAAARGHHH I was ready to scream.

Thinking of taking up a career in book writing this is such a long post but at least I got fuel x

[Marionfromhappydays]

Oh my !

Talk about a palava or pavlova as we like to say 😅

Dont get me started on the mtx injection tutorial, I got so frustrated they wouldn't let me start injections until I'd had one and the waiting list was months. Waste of time, can just watch the video any away we go.

Great news your wound is healing, those bees are so clever ! I saw a recipe for overnight oats and that had honey in it, you could make some, 1 spoon for your leg one for your oats 😅🙇‍♀️

Hope you get your blood test sorted and get the results OK.

Big hugs liz x

[Garnacha in reply to Marionfromhappydays]

Hahaha definitely pavlova 🤣 thank you ❤

The Dr that's supposed to be ringing me tomorrow is not very nice, I had a run in with him a few years ago & sent a letter of complaint, never heard a dickiebird but he is one of the partners, gamekeeper poacher perhaps, see what he says tomorrow, it better not be months or he'll get both barrels from me 🤣 xx

[springcross]

Hi Garnacha. This might be of use to you, it really is so easy. There is a printed one on Google somewhere too, I'll try and find it for you.

metoject.co.uk/uk-patients/

Found it:

metoject.co.uk/app/uploads/...

Hope it all goes well. 🤞 x

[Garnacha in reply to springcross]

Aaw thank you so much that's really helpful x

[springcross in reply to Garnacha]

You're very welcome. The printed one I've just pasted has some good info on it too.

[Garnacha in reply to springcross]

Thank you x

[Boxerlady]

I had to wait several weeks for a nurse appointment to teach me how to inject Methotrexate and ended up needing a steroid injection because I'd been off the tablets so long (they did apologise as I shouldn't have been left without a prescription for the tablets) but I would have been fine just following a video - it's not exactly rocket science!

[Garnacha in reply to Boxerlady]

That's what I was thinking 😀 x

[helixhelix]

When I started MTX by injections it was still syringes, so did have a nurse session (I was also needle phobic, so I needed help).

But now it’s all with pens I didn’t think they bothered? It’s so easy…. Amd when I started on Enbrel it was certainly “here’s the prescription, off you go…”.

I hope you manage to get some sense out of the, all soon 🤞🏼

[Garnacha in reply to helixhelix]

Thank you, I'll let you all know how the phone call goes this afternoon x

[Otto11]

OMG your GP’s sound just as bad as ours!!I too could write a book! It helps to let it out. I would but there’s so much it would take forever. I do however have it all on my computer.

It’s a long time since I was on Methotrexate injections but found it pretty straightforward. I always find stomach easier than leg. Good luck with it all x

[Garnacha in reply to Otto11]

Thank you, its so bad that GP's can treat patients with such disregard. I'll bear that in mind re the stomach x

[Wobbies]

Strangely, when I changed biologic, I didn't need nurse tutorial even though the pen was totally different, but would not dispense MTX injections without nurse tutorial. When I queried it, was told by the pharmacist it is because the nurse has to be sure that you understand all the side effects and are willing to take the risk! Told him I injected biologics and he commented that side effects of those were not so serious. Frightened me a bit.You can't make up the bureaucratic nightmares we have to go through. Sure the NHS would save a load of money if they ran their systems properly. Have often felt like taking over my surgery and directing operations. Sure I could do a better job sometimes. 🤣

[Garnacha in reply to Wobbies]

Lol there's just no joined up writing anywhere 😅 x

[Boxerlady in reply to Wobbies]

My nurse never mentioned side effects although I was already on Methotrexate tablets so had been told about them at the beginning. It was more about how to handle the pen and sharps bin safely but tbh, it seemed a bit over the top 🙄

[Garnacha]

Sorry for not replying sooner my daughter-in-law rang me yesterday to say my 5 year old granddaughter wanted to see nanny Deb ❤ with her 18 month old sister ❤ by the time they left we had to rush out for a meal we'd booked.

The Dr I'd had a run in with a few years ago rang & tbh he was lovely! He didn't start off with how can I help you & knew about the consultants letter which I was amazed at lol.

He arranged for a prescription for metoject to be ready by 4pm so I could get it to the chemist as I know they order them in.

I said about my blood test results & needing them for the consultant & he's going to let the lady who arranges the tests know to send me a copy.

For the last 3 months both my feet & lower legs have felt as if I'm on a vibrating plate, only way I could describe it is if you pull a coiled spring how it vibrates. The Dr said my b12 is pretty low, I was on b12 tablets until April this year when I was told its now fine & b12 is stored in the body for 2 years so don't need it anymore. Since then it's been dropping, they wrote to me to say they've investigated to rule out crohns etc & believe it's caused by diet, definitely not diet I eat plenty of b12 containing food, anyway, I said previously I was on 5mg & now I'm only on 1mg, he said that previously I was on .5 so I'm actually on double that twice a day, I said well can I increase it to 3 & he was a bit hesitant at first but said yes as your body only uses what it needs, thinking about it after the phonecall I'm wondering when they would normally give it by injection.

He did slightly restore my faith in GP's but noticed last night he still hadn't read the consultants letter fully as the lefluminode on my repeat medication via the app hasn't been changed to 20 so I'll email them to change it.

Thanks everyone for your comments & I'll be reading & watching the links kindly shared by springcross x