Puzzled

[Blackwitch]

I went for a Rheumatology appointment yesterday as I’d had to stop Etanercept for the 2nd time due to tonsillitis, itchy rash sore eyes, blurred vision etc. I saw a nurse practitioner who said I didn’t need a steroid injection and because and I have another appointment with my new Consultant in November, I could wait and see what he advises. November! However, she went to get an on-duty consultant who said perhaps I might not have RA. This is having been treated for Sero-Positive RA (non-erosive) since 2005. I also have Secondary Sjögren’s Syndrome (secondary to what?) and fibromyalgia.

I do admit that most of my pain is due to severe degenerative disc disease with rotational scoliosis.

I did get the impression that she was trying to dump me off Rheumatology and to a Pain Clinic. If so, this will be my 7th referral into the Pain Management system. I only once saw a Pain Consultant in 2014 who told me to stop all my meds (no tapering - just stop). Then all I’ve had are group sessions about the Biopsychosocial Model, Mindfulness, breathing and pelvic floor exercises and reams of websites to read. I can’t face the thought, and now physically couldn’t sit through group sessions again.

Has anyone else gone through this? Obviously, if I don’t have RA, that’s good so why have I been pumped full of these toxic drugs for getting on for 20 years? I think I’m in shock.

[Deeb1764]

when was the last time your bloods were checked? As ESR and CPR need to checked rather than everything assumed.

After my few weeks of hell with different departments and RA dept too I would chase hard to get answers and tests and don’t wait til November it’s your life and damage will happen if not sorted sooner.

If RA team won’t do the bloods ask your GP explaining why and reasoning.

[Blackwitch in reply to Deeb1764]

Hi Deeb. I only had the basics checked yesterday at the hospital. Apart from that it was May last year. There’s no point in asking our GP for anything.

[Deeb1764 in reply to Blackwitch]

You need to push for bloods as how can they tell what’s going on my team do them minimum every 4months so they can see what’s going on

[Blackwitch in reply to Deeb1764]

Unfortunately, my GP doesn’t seem to want to see me or comply with anything the hospital ask. I’m testing this weekend and getting ready to ‘fight’ next week. x

[Blackwitch in reply to Deeb1764]

Ah, I had a letter today to book an appointment for a pre-diabetes test. It’s on 13 June. 😂 No other blood tests or medication review though which are well overdue.

[Deeb1764 in reply to Blackwitch]

Mad i get told to do bloods regularly GP and consultants

[Hisue]

Good grief. I can commiserate. (USA)

I have seropositive RA- severe (RF >2000). 10 years ago (& for several yrs after diagnosis), I requested a JAK inhibitor -& was repeatedly told that I was ineligible for JAKs that would cost $10,000/mth (my copay would be an unaffordable $2000/mth).

I was almost dead with pain & joint damage, when a kind pharmacist intervened & told me I was eligible for patient assistance program all along & got the JAK for me.

Docs were too lazy to do the paperwork! "There ought to be a law".

[stbernhard]

I wouldn't let a consultant fob me off that easily. Get a second opinion from another source. It's your right! If you are not sure how to go on about it, please chat to the NRAS helpline on 0800 298 7650. I'm sure they can help you. You have nothing to loose. All the best 👍