Back After 5 Years..

[EnglishRose63]

Hi everyone hope you're having a pain free day.. 5 years later and I'm still in pain and my hands are always swollen and warm to touch. 3 years ago my rheumy said he wasn't convinced I had RA and took me off my weekly methotrexate injections. Constant trips to my gp who IS convinced it's RA and I'm taking ibuprofen and now naproxen.

I had a cortisone injection in my right shoulder a month ago and a lot of the pain vanished. Now both shoulders and upper arms and jaw are massively painful and it wakes me up in the night.

I watched my mum suffer with RA and polymyalgia and then osteoporosis for years and I don't want to suffer like she did bless her. (Polymyalgia hasn't been discussed with my gp as yet as I don't even know if I have it). I don't know what to do next.. xx

[nomoreheels]

If your GP is convinced you have RD then it begs the question why he's trying to ease your symptoms with an NSAID & not referring you to Rheumatology. More so as there’s direct family history, how much more evidence does he need? I'd be really pushing to be referred, now, not when more joints join in as they appear to be doing already. That & the fact you've already had a diagnosis, whether or not it was reconsidered, would have me thumping his table if he's resisting. 😬

[rab1874]

Hi there sorry your being left in limbo,can you see another Rheumy or if you can’t demand somethings done , it’s bad enough being in pain but not having the right meds is shocking plus more damage is being done to your joints without the right meds xxx

[Hidden]

go back to Doc and demand a second opinion from rheumy and more blood tests just in case something shows up. It took 5 years of me constantly chasing GP for it to finally show in my bloods. And you have family history!

[oldtimer]

This is really not good enough. You think, and your GP thinks you have Rheumatoid Disease of some sort. The response to the steroid injection is another indication. Do you have raised inflammatory markers? Not everybody does, but that helps with referral.

You need a rheumatological diagnosis made by a rheumatology team. And proper treatment that will prevent damage to your joints.

[AgedCrone]

Ask to be referred to a different rheumatologist.....if your GP is convinced you have RA he would surely do that?

You will probably have to fight a bit to persuade him because the Rheumatologists in the NHS are so busy .....the waiting time is very long these days.

If you could possibly manage to pay for a private first consultation and then transfer to that rheumatologist’s NHS list, that could speed things up.

I hope you get something sorted soon.

[Mall]

Insist your gp refer you back to another rheumatologist. When you have an appointment with them stop taking the anti inflammatory tablets prescribed by gp for a few days before as these disguise symptoms, if you can bear it.

It was 6 months before my blood tests showed that I was rf positive and in that time I didn’t get proper treatment, for some folk it’s a few years.

Keep pushing until you are seen again.

Best wishes.

[EnglishRose63]

Thanks for your replies guys.. He's already referred me to a rheumatologist but my appointment isn't until April next year and it's the same rheumatologist as last time. I don't think I can go that long to honest as it's affecting my job.

It's not showed up in my bloods yet no, but as you say it's in my direct family.

[KittyJ in reply to EnglishRose63]

Does your hospital operate a cancellations appointment list? Then you can be contacted for a short notice appointment and hopefully be seen sooner than April. Worth asking if you haven’t already 😊

[EnglishRose63 in reply to KittyJ]

Hi KittyJ I'll give them a call in the morning, thanks.

[EnglishRose63]

Well I gave the hospital a call and they don't have a cancellation appointment list but they said I can call them as often as I want to check for cancellations.. My GP said he can't hurry my appointment up as they are extremely busy (which I do understand). He took me off naproxen and gave me celecoxib 100g twice a day which only take the edge off after a couple of hours.

I've had horrendous pain in my shoulders and upper arms these past few weeks also a headache and jaw pain , and I've lost 6lbs.

Getting worried now.

Anyway hope you all have a pain free day. Gentle hugs 🤗