Rheumatologist appointment help

[Gyspysmum]

Good Morning.

( This is a long story so will try to make it as condensed as I can)

4 years ago I was diagnosed with PMR after painful joints, hands arms, shoulders and toes. I was put on a dose of 40mg of pred as they also thought I may have GCA. Although that turned out to be a dental issue. I was never referred to a Rhemy at that time and was left to 'taper' myself off of the pred.

Fast forward, 4 years, my dad passing away, me having covid, then pneumonia then a blood clot and we moved and with it into a new Drs. ( 5 hours away) I had a fall and damaged my knee so attended physio and then they recommended a steroid injection in my knee. At that appointment, my dr asked why I was already on Pred and I explained my diagnosis above. He pulled up my one set of blood results and said and I quote

'that is 100%, not PMR'

He arranged a full set of blood to be taken and an appointment to ultrasound my hands, the ultrasounds showed classic Ra, including synovitis. ? My inflammation markers were at 279. I have no idea what that means, but he ordered a second set of tests two weeks later for that and it had gone up again. I have also been diagnosed with steroid-induced Type 2 diabetes.

Dr referred me to the hospital for an emergency rheumy appointment, which is tomorrow. He also dropped my steroids down to ten, I am in agony and currently signed off work, taking co-codamol to try and get through each day.

So, the appointment is tomorrow, what can I expect? I am nervous. Feel like I am pinning so much on this appointment to get me to help and terrified they are going to send me away and tell me it's something else or I am imagining it all. I am depressed and struggle some days to get through.

I have been on the NRAS website and read through a lot of the articles but am feeling very overwhelmed with everything and would really appreciate some advice.

Thank you so much

Marie

[helixhelix]

hopefully the rheumy will examine you properly and prescribe disease modifying drugs to slowly replace the pred. There are many, many good drugs available if you have RA.

What dose of pred were you on before you dropped to 10mg? You may need to ask for your cortisol levels to be checked too.

Write a list of your history/symptoms as bullet points, and wear clothes that are easy to get on and off if they want to examine you completely.

Hopefully first step to a better life.

[Amnesiac3637]

Poor you -sounds like you’ve been having a horrible experience and not being properly diagnosed just makes it all feel much worse! Agree with what helixhelix has said and glad you have an appointment tomorrow so you can be examined and your steroid dose titrated if necessary.

Don’t panic, pretty sure nobody’s going to send you away as you have signs and symptoms of RA and as soon as you’re prescribed the right drugs things will settle in time. Very best of luck at your appointment and hope you feel much better soon.

[Runrig01]

I have a very similar story, in that I woke up in 2011 with sudden muscular pains in all the classic PMR areas. I was 46 at the time, so referred to rheumatology, who diagnosed PMR. 3 months later I developed the GCA symptoms, which were ignored for 6 moths as I “couldn’t be that unfortunate, to get atypical PMR & GCA”. I had a temple biopsy but it was inconclusive as I’d been on steroids for 10 months by then. I happened to put a post on the charities forum, showing vascular lesions on my tongue, and it was seen by one of their medical advisers. She contacted me privately, and suggested getting a referral to her urgently, shd was 250 mile away in Leeds. I had special ultrasound of my temples, and was also seen by the professor who writes the guidelines that professionals follow, who agreed it was GCA. The Leeds specialist felt there was more going on, as my spine, pelvis and neck pain were waking me in the night, but would ease when I got up and moved. She suspected a spondyloarthropathy. She was correct, after X-rays of my pelvis which showed fused sacroiliac joints, and an mri which showed the same, plus fused ribs and lots of inflammation, I was diagnosed with ankylosing spondylitis as well.

Please be careful with the steroid taper, I started to try and wean off mine in 2016, as steroids aren’t helpful with AS. I was getting nausea, losing weight, getting lightheaded etc. My gp felt it was an ENT issue, I suspected my adrenals and asked for referal to an endocrinologist. 3 weeks before my first appointment with the endo, I had a severe stroke found to be due to an adrenal crisis. I was diagnosed shortly after with severe adrenal insufficiency. My cortisol levels in the morning should have been 450-550, mine were undetectable. I’m now on steroids for life, as my adrenals have 99% atrophied, and have to carry an emergency intramuscular steroid injection at all times. My family have been trained to use it, and sadly as I get severe migraines with repeated vomiting, I’ve had to use it fairly regularly on myself. I get very ill when exposed to any stress, good or bad, as a healthy person would automatically produce more cortisol to deal with the stress, I don’t I have to rely on tablets and wait for them to kick in, or inject. These AI symptoms started when I reached 7mg. If you develop similar issues please see your gp for a blood cortisol test, I’ll attach a chart of low cortisol symptoms, so you know what to look for. It’s a rare illness and even many local endocrinologists don’t get much experience with it. I have to go to London to be seen. I’m sure you’ll get answers soon, and be given treatment that will help. Take care, and be kind to yourself. 🤗

Low cortisol

[GinnyE]

Thank goodness you changed GP. This one sounds as if they are on the ball. I'm pretty sure you'll get the meds you need now when you attend your appointment. When RA is controlled you'll feel so much better. And they should look at the steroid use too. Good luck.

[Vixen2]

Hi Gypsymum. You have had so much to deal with. We all have sympathy for you on here. In 1993 (i was 21). I suddenly started getting severe pain in my right big toe, left shoulder & a really bad flare up of conjunctivitis. Went to my local optician. She said i needed to get to a&e straight away. That i had a very bad case of Iritis. She said i needed a steroid injection in my right eye. From that day on. I’ve had so many steroid eye injections. 2 cataracts removed & loads of other procedures done to my eyes. I now have Glaucoma too. A week after i was diagnosed. The severe pain moved to every single joint. At 21 i was walking like an old woman. Chronic pain is very depressing! I was on loads of steroids, sulphasalazine, indocid, co-dydramol, co-codamol. Thank God i’ve been having Infliximab infusions for the last 20yrs on the lovely NHS. I can’t walk without this stuff. Plus it helps my eyes. Good luck with everything & like i often say. This forum’s great. You can come on here. Day or night & have a good moan. We all understand what you’re going through. The heat’s annoying me. So i find a big bowl of vanilla ice cream really cheers me up & a really cold glass of water! While i sit infront of my fan! Good luck again. X

[snotts]

I am so sorry to hear your story Marie and and glad you are starting to get some answers. I understand that synovitis on the ultrasound is a very standard RA finding - it is how my Ra was diagnosed. I hope your appointment today goes well and am glad you've found us here - let us know how you get on

[Sheila_G]

Try not to worry. The Rheumatologist will take care of you. They will sort out the best medication for your condition.

[Helen-NRAS Moderator]

Good morning. If you would like support, information or just someone to talk to, our NRAS helpline is open every weekday from 9.30am to 4.30pm nras.org.uk/helpline/ 0800 298 7650. Kind regards.