Fed up

[Brian1977]

Hi guys me again after seeing the rheumatologist nurse last week and stopping the methotrexate I got my follow up letter. I was saying about my lower back pain getting worse and it going round to my hips. So she has booked me in next week for xrays on my lumbar spine and si joints. Anyway it says she spoke to my consultant after I left and he thinks it's probably osteoarthritis. I was diagnosed with pancolitis 2 years ago then last year all my joints became painful on both sides. I can't straighten my fingers neither on both hands. When I finally seen the rheumatologist in September he said its either peripheral athritis linked to the ibd but I'm sure that's calms down when you are in remission from the ibd he also said it could be rheumatoid athritis but he was leaning towards the peripheral. I should really ask more questions but I get confused with all this mumble jumble doctor stuff lol. Anyway I read about the spine pain and it said those who have been diagnosed with ibd are more likely to get ankylosing spondylitis could it be possible they could be mistaken for the osteoarthritis and ankylosing spondylitis

[Bon1]

dear Brian I think you make a good point about the spondylitis. I am only just realizing years of neck and back pain are related and wish I had made a fuss about it instead of muddling along. Although it might be osteo you need to be sure. I don’t think an x ray will show this - maybe you need another type of scan which would show inflammation. Possibly ultrasound?

Bon

[Brian1977 in reply to Bon1]

I'm just fed up of being in a pain I had a battle most of last year trying to see a rheumatologist it was awful

[Mmrr]

I don't have any advice for you, but just wanted to comment how confusing the RA / not RA diagnosis can be. You are not alone in a diagnostic muddle. I have a complex medical situation of which no one will commit to a firm diagnosis. I have cervical and lumbar issues, have had since my late 20s and I'm now in my 60s and have had RA type symptoms for 6 years

The initial possible seronegative RA diagnosis is being questioned by my new rheumatologist, but he has not suggested anything to replace it.

Hang in there and do ask questions, the medics might not have the answers, but questioning makes them think.

[Brian1977 in reply to Mmrr]

It's so confusing eh it was seonegative so even more confusing. But symptoms are symmetrical which leads me to think it's ra. I've been on methotrexate for 4 months now and no improvement it deflates you sometimes and leaves you in the land of limbo

[Mmrr in reply to Brian1977]

MTX did nothing for me other than make me ill. If it isn't working after 4 months it probably isn't going too. Keep pushing for better care. JAKs and leflunomide have by far worked the best, both of which I take now.

[Brian1977 in reply to Mmrr]

I've had to stop the methotrexate at 20mg because my alt levels had went upto 255 but I need to wait until they come back down then move upto 22.5mg if they come back down which makes no sense eh

[Mmrr in reply to Brian1977]

I was encouraged (some may say bullied) into staying on MTX for 11 months, despite being ill with it. After 2 episodes of being incontinent, I stopped taking it emailed my consultants secretary and said ....no more. I was re MRId which showed synovitis and tenosynovitis and was fast tracked to biologics. I received a letter from my consultant saying my care had been 'less than optimal'.

I always ask questions now and provide a written update for scanning into my notes at every consultation. My care has improved.

[Runrig01]

I struggled for years with back pain, always blamed on my job as a trauma nurse. I was seeing a rheumatologist for polymyalgia and GCA, I was sent to one of the countries experts for confirmation as I was only 47 when symptoms started and they were hesitant re diagnosis. When I seen her she agreed I had both, but felt there was an overlap with spondyloarthritis. I had X-rays of the SI joints that day in clinic, which showed my SI joints had fused and was diagnosed with AS. She referred me to a colleague who works with NASS, after mri she agreed I had an aggressive form of AS, and confirmed my ribs were also fused, and after taking lots of measurements confirmed I had no chest expansion. I was already on steroids and MTX for the PMR so I was referred back to my local rheumatologist for biologics. So I was diagnosed AS at 51, but told I clearly had this for over the 25yr I’d been complaining of back pain. My dad always had back pain, but his was blamed on being a shipbuilder, he died in the classic stooped position. I’m certain he had AS, I was positive for the gene, hbla27. I have an identical twin, who will also be positive but doesn’t have AS. I should say you can be gene negative and still have AS. I still struggle as you can’t reverse damage done, but I’m certainly less stiff on biologics, and the pain is more manageable.

[Brian1977 in reply to Runrig01]

You poor thing glad you have finally got some relief. They were going to put me on biologics with the pancolitis because they couldn't get it under control but they kept me on the mercaptopurine once the inflammation cleared in my colon but I'm sure it just moved straight to my joints then. I always wonder if they had moved me onto biologics then I might not be suffering from all this joint pain now

[wilbertjellyfish]

I think the problem comes in when there is a lot of overlap of symptoms with different conditions and it's hard for doctors, never mind us, to work out what is related.You do need to push for more tests, I could be wrong but there might be a blood test for AS.

Also if you don't understand the terminology they are using. Say to them and ask for a simpler explaination....or see if you can speak to a nurse after for them to explain.

If the x-rays show nothing push for an MRI...they aren't pleasant but might get more answers.

[Brian1977 in reply to wilbertjellyfish]

Thays exactly what I'm thinking to push them for an mri scan if nothing shows in the xray

[oldtimer2]

Please just go on asking questions. The doctor won't know you don't understand unless you say so and ask for clarification. They get so used to talking in technical language they forget that other people don't understand. And read up as much you can from reputable sources like the NRAS website and Versus Arthritis. Specifically look at the Ankylosing Spondylitis Society: nass.co.uk/

[Angels54]

I think you need a scan , I have suffered spinal problems for nearly 4 yrs , can’t believe I am seeing consultant this week, this is due to complaining as I have been told so many times I will get a call , everything cancelled, my back is worse than over , think it’s too late for me now , sadly this has changed my life in a big way , I have RA , Osteoarthritis, several other health problems. I feel it for you , hope you get some support and relief soon 👍