Rheumatology Appointment

[Bonosglasses]

I've got a first appointment with a consultant rheumatologist next month to determine whether I've got rheumatoid arthritis (suspected by GP). Can anyone tell me what to expect at this appointment please?

Thank you

Hi, @Bonosglasses just been diagnosed too. Shit innit? .

My first appointment was as a result of a blood test from my GP. The consultant I saw felt that only over the counter medication was necessary. She asked me lots of questions like how long it takes me to move comfortably from a sitter or lying position and about my diet and life style extra. I was weighed and had my blood pressure done too. She then sent me for another blood test, which she said would be more specific. That was pretty much it.

I then got another appointment through and I went this week. This time, she immediately said she would start me on a drug called hydroxychloroquine. Apparently it can put rheumatoid arthritis into remission. It could take up to 12 weeks to see an improvement and I have to go and see her and have a blood test every month. I'll be on 2 tablets a day initially and as she monitors me, it'll be reduced.

I had to have a chest X-ray and more bloods taken, this time to check all sorts of things, because the drug can be damaging if your organs if you are not in good condition to start with. Oddly, I can't actually start the drugs before I've had an eye test. Apparently, it can effect your retinas, so again they need confirm that my eyes are healthy enough to stand the effects. I also have to have an ultrasound on my hands and feet, because there isn't any visible swelling, but RM is definitely confirmed. She said that it all patients have visible swelling.

It all sounds a wee bit scary to be honest, but if it gets me out of this horrendous pain, I'll take it. She began the consultation by saying, if we don't act now, you could potentially end up in a wheelchair.

Hope that helps. Happy to be an RM buddy if you like? It's really hard explaining to people why you're limping or cradling your arm, because you tell them and they immediately say, 'oh I know, I hate this weather, my knees are killing me too' or something like that and I just think, you haven't got a clue what this is like! It's not their fault. It's an invisible disease for the most part.

Thank you Maureen. I just didn't know what to expect.

I'm thinking they'll be blood tests and X-rays.

Not looking forward to being weighed (v overweight) and my blood pressure goes through the roof at medical appointments.

Oh well, something to look forward to 😊

Lol, mine too! My doctor calls it white coat syndrome. I always have to explain my high blood pressure. I hate it. It just feels like it's going to make my arm explode!

I'm having a flare up now. Was all geared up to make some Christmas sweets as gifts this afternoon, but did far too much cleaning and tidying this morning I think and now my wrist feels like it's broken and I can't move my hand at all. Still, I knew it was coming, so I'm well dosed up and I don't have the usual unbearable pain.

Listen to your body. I always know when I’m going to get a flare.

Was diagnosed about 15 years ago. I’ve been on a cocktail of drugs for years. It’s mostly stable. If a drug doesn’t work make sure you let them know.

Regular blood tests & appointments are par for the course.

Good luck it’s a long road but treatment has improved.

I’ve lost 4 stone which has also helped as less pressure on the joints.

It depends on your clinic/consultant. At mine he registrar took a full history, then thorough joint examination, followed by bloods and chest xray. I'd already had hands ex rayed at request of Gp. Registrar didn't seem that convinced (I had sudden onset and multiple joints flaring) until she looked at my ankle that was swollen up like an orange. I was given a general steroid which immediately helped and was sent off with a prescription for Gp to be taken once bloods and xrays come back, ie so I was eligible to take the meds. Follow up was 4 weeks.

Hi Bonosglasses. I'm 44 and was diagnosed with inflammatory arthritis around 2 years ago. Initially I had several X rays, ultrasound scans, lots of blood tests and an examination by the Rheumatologist. I too started on Hydroxychloroquine. Unfortunately my arthritis was extremely aggressive, (according to the Rheumatologist). I was extremely unwell and went from being very active to struggling to function at all. Even turning over in bed was agony. I wasn't keen on taking drugs and tried lots of natural remedies and various anti-inflammatory diets. Sadly for me they didn't help, although I have heard some people say they work wonders. I'm now on triple therapy of Hydroxychloroquine, Methotrexate and Sulfasalazine. I'm pleased to say that the medication has worked wonders and I am pretty much back to normal. The meds are a small price to pay for being pain free and doing everything I did before. I wish you the best of luck. Rheumatology has come a long way and many people are living active lives with this chronic condition.

Hi Doublevodka, I'm going to completely hijack this thread now, but hopefully it'll give Bono plenty of tips that she might need anyway.

So, I was diagnosed only a few weeks back, but I've had some pretty awful flare ups since then. It's almost as if my body and mind knew I'd been diagnosed. Do you recognise when one is coming and are there things you do that you know aggregate it? I've managed to save myself from chronic pain today, but I think that was more luck than judgement!

Also, how long did it take for you to notice any difference in the frequency and intensity of flare ups?

Hi MaureenMLove.
When mine started there would be a few weeks in between flares. I didn't see any pattern at all. I didn't recognise when a flare was coming either. I really don't think any particular activity or anything that I did made it happen or made it worse. It seemed completely random and I literally never knew how I would be the following day. I can't say that I noticed anything specific about the frequency initially. When it came though, the intensity was always really bad and very debilitating. It then became more and more frequent with hardly any good days in between. I understand it's not like this for everyone though. I have heard lots of people say that the weather makes them worse. I can honestly say that the weather made no difference to my flares. It took a while to get me on the right combination of drugs but they have been amazing. For the past 2 years I have only had slight swelling of the odd joint and very little pain in comparison. I am very grateful for my cocktail of medication!

Maureenlove, I know your question wasn't directed at me but thought I'd share anyway as I was only diagnosed last year. Interestingly my symptoms got much worse after the date of referral to my first consultation. While I had different joints affected I deteriorated quickly over the course of about 10 days until I could hardly walk. It then improved by the time I had my appointment.

Leaving aside the drugs, which do work for me, I've found that some factors will make symptoms worse. These include lack of sleep, eating badly -especially a lot of gluten and working too hard, either physical or mental. Things that help are exercise, (I cycle nearly every day if I can), good diet with lots of pro-biotic and pre-biotic foods and avoiding alcohol. Tonight I can feel my joints worsening but I've had a really busy weekend after a full on day at work. So making myself a healthy spicy soup (with turmeric) and will rest up tonight. I'm hoping that with a long sleep will stop it getting worse.

Thank you Alice, thats really useful. . Hope this is ok Bono! . Feel like I'm doing this for both of us anyway!

I'm going for my eye test tomorrow and then straight to the hospital pharmacy for the drugs all being well.

I can't remember what my initial appointment was like as I was diagnosed 20yrs ago but they usually examine your joints, ask questions, take bloods, they may x-ray (I get these periodically to keep on any joint damage)
It may take some time to work out what drug works for you - it's not a quick thing I'm afraid as each drug takes a while to get into your system and to see if it having an effect and what works for one person may not work for another but once you do get the right drug it can be life changing and great. It's one of the frustrating aspects of treatment.
I'm on methotrexate and Humira (added after the birth of my 1st as the methotrexate didn't cut it on its own afterwards) - a lot of the drugs can sound scary but they are very good at checking they are suitable for you and monitoring you on them so they can react if there is a problem. The most common side effect for most of them is nausea and that can be managed in a few ways. I highly recommend the arthritis care website talk boards as a place to find people to talk to and give tips they really really helped me when I was first diagnosed.

Maureen hijack away. The more Information we can get, the better.

Mine started with swollen hands, feet and left knee. Couldn't make a fist and couldn't get my shoes on. Swelling has gone down but have a lot of pain in hands and feet. They ache terribly and are very warm.

Also noticed that if I use my hands a lot on one day they really hurt later that day/next day. I.e. Wednesday typed all morning at work, wrote out loads of envelopes. Hands hurt driving home. Came home - wrapped Christmas presents and moved furniture around. Hands were terrible on Thursday. Only just settling now but still full of aches and pains.

It's all happened very quickly. Still trying to get my head round it.

After looking at the symptoms I wonder if I've had it a while and I've just had my first big flare.

If the consultant is following protocol, they will check your joints.
They will assess how many are sore or painful. This will go to a score to assess how likely it is that you have RA.
You will also have bloods drawn and possibly a urine test. These are to check for RA antibodies and inflammatory markers.
They should also take a history, and with all of the other things, make a judgement from there.
You might get a diagnosis there and then, it they may need to wait for test results.
Good luck.

I had a full examination, blood tests, urine test and discussion about my medical history. I have had X-rays in the past but many years ago, and I’ve been diagnosed with various autoimmune conditions from blood test results and examinations since.

Ive just bought some sports cohesive tape in the supermarket, mainly because I need to not move my wrist at the moment. It's incredibly painful. We did have a hand splint which I intended to use, but that's disappeared into the Abyss of DDs bedroom!

Anyway, it's a bloody god send! Instant relief and I'm able to use my hand and fingers more, because my wrist is static. It's a compression bandage effectively, so doing exactly what it should. Just been online to and bought some in black, tan and white, to make it less obvious on my hands, depending on what I'm wearing. This one is bright blue, but needs must! I figured the tape does the same as the splint, but I can use the same tape on various different joints, instead of needing specifically designed left or right splints. They were also only £1.25 each!

Hi bono, I don't know if you've been yet but I'm in the same position as you and had my first appt yesterday. They will want to check your knees and feet so make sure you're wearing something which gives the doc easy access to these without you having to undress your lower half! Stupid me went wearing jeggings and he had to go and get a chaperone!

Do let us know how you got on

I have an excellent rheumy. She got my full family history out of me on my first appointment, every last bit. Wear decent undies because some like you to strip (don’t be embaressed about it), be honest when they palpate with a joint count and don’t underplay the pain or difficulties you have when you wake up with stiffness. Any pain with what a gp might have said was normal, like golfers/ tennis elbow, plantar fasciitis then let them know. Basically be brutally honest about how crappy you’ve been feeling. Expect more detailed bloods if anything clicks with them, X-rays and possibly mri or ultrasound scans on various body parts.

Oh and write a list because I can guarantee your mind will go completely blank when sat beside them.

Excellent advice about the footwear Slutty! I have to forgo tights and boots to work on a hospital day, because I know I'll have to take my shoes off several times, for weighing and X-ray and getting on the bed!

I've been on hydroxychloroquine for 1 month now and I'm noticing a difference already. I haven't had a really painful flare up in my hands or shoulders for nearly 2 weeks now and I was getting them every 2 or 3 days. Still sore in various places though.

My feet were bad last week. Putting anything on my feet was excruciating. This week not so bad.

My colleagues ask me on a scale of 1 - 10 how my pain is every morning, bless them. I'm on a 5 today, which is great, because most of last week was a 9.

Do come back and let us know how you're doing. It's nice to have someone on MN is share notes.

Hi. Sorry just seen the last couple of messages. Had my appt a couple of weeks ago. Had to strip down to undies (yikes) but had a sheet over me so not too bad. Hands, feet, knees and elbows were examined. Dr took a history. He thinks it'll be confirmed as rheumatoid arthritis but he wants x-rays and ultrasound done to confirm. X-rays were done on the day. Ultrasound is in a couple of weeks. Oh and more bloods were taken.

It was typical that for the first time in ages I had no pain and very little swelling in my hands and feet but the day before I'd been in tears with the pain in my hands.

I've got to wait until end march/beg April for my next appointment. He told me to just take paracetamol in the meantime which isn't touching the pain!

And to top it off I've now got horrible pains in my shoulders/collarbones/clavicles. It hurts to do anything at the mo. Need the appointment sooner rather than later.

Hope you're all doing ok? 🌺

I always find that seeing my Rheumy is the best way to get improvement in my condition - I think I should just hang out with her permanently.

Glad you've started down the route, sorry he hasn't given you anything but I'm guessing he wants the US to show as much active disease as possible

Paracemol won't touch the pain, I'm sure. In between seeing the consultant and getting on the medication, I had a really awful flare and I ended up going to urgent care. I had taken over the counter co-codomol and the doctor there told me that wasn't going to touch the pain, so I've got prescribed ones now. I don't take them very often, because I'm worried about addiction, but when I need them, I have no choice.

I find a hot bath and holding a hot pack on the joint relieves the pain a bit.

Bonos Generally speaking the GP deals with pain relief rather than the rheumy so it’s a good idea to see them and get a plan in place, although I wouldn’t take anti inflammatory meds until you’ve had your scans done so any inflammation will (should) show up. My Gp gives me a large quantity of codeine monthly to use alongside taking paracetamol four times a day. You can buy paramol over the counter, it’s the strongest pain med available before needing a script, but you can only buy three days worth at a time, just an insurance in case your Gp isn’t cooperative.
Also keep a diary and take pics or get someone else to of any swellings because we all have times when we rock up and look completely normal physically

Sorry just need a bit of a moan.

Have been in a lot of pain this week. I can't take many ibuprofen due to a longstanding stomach problem and again the paracetamol just isn't working. I took two codeine this morning and it knocked me out. It's worn off now but I don't want to take any more as one makes me sleepy and two knocks me out. DD coming in from school soon so want to be conscious lol.

Maybe a wine (or two) tonight will help 😉

🌺 For everyone

You poor old stick Bono, I'm just over a flare-up myself. I'm doing a bowl full of hot water, Epsom salts and verbena handwash in a min if you'd like to plunge your hands in

Could you see your GP next week and explain that whilst the consultant is pretty sure you have RA, you haven't started medication yet. They might be more inclined to give you a decent painkiller or even an ibuprofen gel which would bypass your stomach. I get Fenbid gel, which is basically Ibuleve Max (but try and get the gel of the doc - 50ml Ibuleve is around a tenner whilst Fenbid is 100ml and will cost whatever you pay for prescriptions).