PHONECALL FOR F2F & GENERAL MOAN (SORRY)

[Garnacha]

Hi everyone, hope you're all as well as you can be.

I had a f2f in March which was only my 2nd appointment with the NHS rheumatologist, I wasn't very happy with this appointment as the consultant more or less told me I had to decide what was worse, the pain or side effects from the medication & suggested I might try reducing some of it if the side effects were so bad, I also felt that I wasn't believed with the pain in my side, back & front of ribs, he said it was probably muscular.

in March I caught covid & had to stop metoject & lefluminode for nearly 3 weeks, the joint pain came back with a vengeance as did the rib pain.

I went for a steroid injection in my right shoulder in May but the radiographer said he couldn't do it as there was a small tear in my tendon & he recommended I'm referred to an orthopaedic surgeon, he said to ring my consultant as I wasn't due a f2f till September, the consultant also recommended I see the orthopaedic surgeon & was arranging it, but, when I explained about the pain not only in my shoulder but also my ribs he reluctantly (I felt) gave me a weeks supply of 10mg prednisolone & a week at 5mg, even though it took 20mg to kick it into touch last time, he basically said that even if it was caused by psoriatic arthritis the treatment & medication I'm currently on would be the same, initially I thought yes it would but then it occurred to me, if it is caused by PSA then the medication obviously isn't working!

I've rung the helpline a number of times & been waiting for either a reply or for them to let me know what the consultant says as 10mg only slightly touched the pain, I did have a couple of 5mg left from before so for 3 days I upped it to 15mg & could definitely feel an improvement.

I chased them up again Monday & Tuesday & had a phonecall yesterday to say he wants to see me next week.

I'm dreading it tbh as I feel as if I'm making a fuss over nothing, especially as the pain eases once I'm up & moving about, but I can't sit for long & sleeping is almost non existent, I'm so glad @Charlie_G sent me the link on enthesis which I'll take with me, a lot of people suggested I try to see someone who specialises in PSA, but checking out Spire / Nuffield website there isn't anyone in my area & I'm not sure if the consultants & their specialities are listed on our NHS website.

Fingers crossed he does something next week as we're going to gardeners world straight after the appointment & the thought of driving for 3 hours sat in a car I know is going to be so painful, thank god hubby's driving so I can try & move around a bit but guessing we'll have to make lots of stops on the way 🙄

We've also bit the bullet & booked 2 weeks in zante beginning of July so really hoping something is working by then, just thought I'd mention (even though I've already gone on & on & on 🤣😂) If you're going to Greece you can only take 5 prescribed medicines into the country, I had to contact the Greek embassy by email who said if I take a prescription showing the meds, signed by a gp & showing my disease its fine, I explained that the prescription doesn't show the disease or have the GPS signature as that part is kept by the pharmacy, I asked if a letter from the consultant dated last September stating my disease was acceptable along with a copy of the prescription & they answered yes, I'll be taking the email correspondence with me too just in case.

Sorry for long winded post 🙄🤣 x

[Mmrr]

I'm sorry to hear that you are suffering. I just don't understand why we are not believed. In my experience writing things down results in an almost immediate positive response. So an email to the consultants secretary, prior to your appointment or a summary of your health concerns on the day of your appointment, asking for the summary to be included in your notes might be appropriate.

And, the consultant is wrong, that is they are absolutely incorrect....you do not need to choose between side effects and pain. Appropriate treatment is needed.

I'm not sure of your approach to managing your care, but you have been proactive in chasing up an appointment. Keep going.

Working for the NHS your consultant has had training and salary paid for from the public purse. Your taxes. They are public servants, in position to serve your needs.

You deserve better.

[Garnacha in reply to Mmrr]

Thank you, yes it's bizarre really, why would we make things up, I feel like a naughty child being called to the headmaster's room 🙄

I don't have the consultants secretary's email & have been keeping notes / sort of diary on my phone, think I will write it down & take it with me as you've suggested, I did take notes with me the first time but he didn't seem interested in keeping hold of them, think this time I'll ask him to keep them with his notes & keep a copy of what I've given him.

If he tries to say I have to choose between pain or side effects or that the treatment I'm currently on would be the same for the pain in my ribs I am going to say that the medication isn't working then.

Thank you for replying & advice x

[Mmrr in reply to Garnacha]

That's a good way to put it, a naughty child being called to the headmasters room 👨‍🎓

[Garnacha in reply to Mmrr]

🤣😂 x

[Luna67]

Am so sorry to hear that you are having such a hard time. Its absolutely appalling that you are are being told to choose between side effects or pain, its just mind blowing! I had a similar experience and asked to be referred to another hospital and rheumatologist, who was so much better. I don't know if this would be an option for you? I was lucky and had another hospital within reach. Good luck with your next appointment, I hope it goes well.

[Garnacha in reply to Luna67]

Thank you, funny enough I was chatting to my neighbour last Saturday who also has RA, he wasn't happy with the main consultant he was under at the same hospital as me (I have a different consultant) he asked to be transferred to another hospital and has been very happy with the new consultant and treatment, this hospital isn't hours away but is a bit of a trek (about an hour depending on traffic), I'll see how it goes next week, thank you for your support x

[Luna67]

Aw you're welcome. Let's us know how you get on. X