Hospital

[Deejojo]

Well was at the hospital yesterday to get screened before I start my dmards chest X-ray bloods

Tomorrow having a scan all these tests let's hope these drugs work 😖🙀😭😟😩🤕

[FionaHerts]

It's good they are doing screening tests. I'm on my third DMARD and have never had any screening 🤔. Does everyone starting a DMARD get screening, or is it just my hospital is a bit lax?

[Deejojo in reply to FionaHerts]

I'm

Not sure hun I'm on a trial so could be the reason xxx

[FionaHerts in reply to Deejojo]

Hope it works well. It would be good to have another DMARD on the list.

Best wishes

[Deejojo in reply to FionaHerts]

I'm dreading 😟 it to be fair but anything that takes the pain away will. Be good xx

[nomoreheels in reply to FionaHerts]

You should really have had a chest x ray before starting MTX, just so you have a baseline image done, did you not?

[Deejojo in reply to nomoreheels]

Yes had that done on Wednesday hun and bloods x

[FionaHerts in reply to nomoreheels]

No, no checks at all before stating Methotrexate!

I'm not surprised, they did no tests prior to starting Hydroxychloroquine either and skipped on the annual eye exam too. Unfortunately, I developed chloroquine retinopathy in both eyes, but luckily it was caught during a digital retinal photo and eye exam at Boots opticians.

I have to fight for any diagnostic tests, even foot X-rays, despite foot involvement. No ultrasound scans or MRI's like I read about others having to assess inflammation when there's pain but inflammation is not visible. Everything is done on blood test results only. Very frustrating!

[nomoreheels in reply to FionaHerts]

That's really not good you didn't have a chest X-ray before starting MTX. With HCQ normal for your Rheumy to ask you to have an eye exam before starting it, just by an Optometrist at a general opticians &, unless otherwise indicated, annually advising your Optometrist you're taking HCQ. If there's reason to it would be arranged to have your eyes tested by an Opthalmologist at hospital. I had my eyes tested initially at a high street opticians before starting HCQ but as a side effect I had light sensitivity so my Consultant arranged I had my eyes tested thereafter at the Opthalmic Dept in the hospital. I do hope you've no permanent damage as a result of not being advised to have eye checks? As well as digital retinal imaging did the Optometrist examine your eyes with an ophthalmoscope? This is usually done as well.

It's been the same for me here re imaging, my Rheumy is reticent to use them, except for my basic initial X-rays when I first saw her to reinstate my meds. That said she currently has an excellent Registrar who didn't hesitate to order X-rays of my neck & shoulder when I saw her last, she referred me for Physio too. Let's hope you get a similar one! Have a nice weekend.

[FionaHerts in reply to nomoreheels]

Hi. No eye test or mention of it all all when I started on Hydroxychloroquine. I was having an annual eye test and digital retinal photo at Boots opticians and they picked up the chloroquine deposit in one eye first and kept a watch on it. A year later it was bigger and was starting in the other eye, so referred straight back to Rheumatology.

The consultant poo pooed the idea that I had any side effect, had never seen it in 20 years practice, until he looked at my eye with a magnifying lens and sent me straight up to ophthalmology.

Consultant ophthalmologist said it was a classic case of chloroquine retinopathy and I stopped the tablets straight away. Yes I had ophthalmoscope and also using a slit panel in front (sorry, can't remember it's name), Amsler grid, colour charts, field of vision tests. Deposits continued to build on both macular for around 6 months, then stopped. I was monitored every year for 4 years.

Yes, I have some permanent damage. The retinopathy has destroyed some of the cone cells, so I can't see the hidden numbers in a colour blindness book any more. I also have a bit of distortion to my vision, so a line of text can appear a bit curved in places. However, I am very lucky I caught it before I lost my central vision!

There has never been any mention of a chest X-ray before starting on Methotrexate. I will ask the Gp when I next see him. He is already holding his head in his hands that the hospital have referred me back under shared care for him to do my prescriptions and blood monitoring when I'm not on a stable dose yet and have only been on current dose 6 weeks! However, at least with the Gp monitoring I think I have better chance that someone's looking at my results and I can also see them online!

[nomoreheels]

Busy time. Fingers crossed for you Dee. Anyone on trials has my admiration. x

[Deejojo in reply to nomoreheels]

Thanxs hun very scary but I need this pain to go xx

[Deejojo]

Never been away from hospital this week chest X-rays bloods taken back this morning at 10-30 for scans feeling a.bit overwhelmed to say the least can hardly use my right hand now as the pain is horrendous 😖in the side of my wrist x

[nomoreheels in reply to Deejojo]

Which is it you're trialling?

[Deejojo in reply to nomoreheels]

Golimubam ??? Is that what is called x

[nomoreheels in reply to Deejojo]

Golimumab I think, Simponi. So is the trial to prescribe it as initial treatment? It's an anti-TNF so as it is now we usually have to go on DMARDs first before we're considered for those. I hope if it a Phade 3 trial you receive it & not the placebo. x

[Deejojo in reply to nomoreheels]

I'm

Not gonna know what it will be it will be a blind trial but I know i will be getting methotrexate very confusing for

Me had that many tests x

[nomoreheels in reply to Deejojo]

Ah, I think I've come across info for a similar trial with golimumab & MTX. I think it was in Amsterdam though & for PsA.

I'm sure it must be vey confusing though you're in safe hands. Just turn up when you're needed! x

[Deejojo in reply to nomoreheels]

That's what I've been doing hopefully all tests are done now be starting the drugs soon xx