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Old 3 Jun 21, 07:37 PM  
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Tigger71
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Rheumatoid Arthritis (RA)

Saw a rheumatologist the other week and he thinks I have Rheumatoid Arthritis - getting some more bloods done (my Rheumatoid Factor was 305) and seeing him on Tuesday 8/6 again.

I feel rubbish at the moment to be honest so its good to get a diagnosis obviously (if its RA or something else) but i dread having a chronic and auto immune conditionÖ my mum had Fibromyalgia so I have seen what fatigue and pain can do to you. I am only 50 but my body feels like its going on 80 and I am soo tired all the time. Apart from this I also have Hypertension, Postural Hypotension, IBS, GORD (reflux), Drye Eye Syndrome and floaters/flashes in my eyes.

So feeling a bit down - wonder how it will impact future trips to Disney etc. If anyone else has RA - how do you cope?

Also - what questions should I remember to ask the rheumatologist when I see him next week? He mentioned potentially giving me a steroid injection - can I drive home after that?
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Old 3 Jun 21, 07:46 PM  
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gl20
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My wife has had RA since she was a young teen (brought on by daily gymnastics training). Didnít stop us going to WDW. The flare ups are weather dependent but, broadly, the hotter the weather the better, hence no issue with Florida. She has now been advised not to go on any big rides but thatís more down to the impact of RA on her spine, a consequence of having RA for so long.

Basically, itís not great, but sheís learnt to live with it. Can understand your reaction to this news and hope your able to get good treatment.
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Old 3 Jun 21, 07:55 PM  
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Hi, I was referred to rheumatologist a couple of years ago (in the end I had to pay private but thats another story).
He checked me all over and ran blood tests for RA, my dads side have 4 out of 7 RA, so its in the family. I was diagnosed with Fibromyalgia instead. One of my aunts that has RA also has Fibro as they can come together, she has her RA under control but Fibro she can't get it under control. I am on low dose amitriptiline for my fibro, have also had tramadol, gabapentin, morphine and other drugs. I take naproxen as well when needed. I think if its RA you will be treated with steroids. I am 50 and life has got very slow for me over the last couple of years, I also have other health issues but the Fibro knocks the c@@p out of me, especially the fatigue. I haven't done a theme park holiday for a while and have been enjoying road trips, if I don't want to get out of the car then thats fine. At least you are getting sorted pretty quick, so they can get you on treatment. Hope it goes well for you 😊

Forgot to add, you will learn to pace yourself, take it slow if you go to the parks and do what you can on the goods days, when the bad days hit have them as rest days, on holiday and at home.
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Old 3 Jun 21, 08:13 PM  
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Col&Ali
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Originally Posted by Tigger71 View Post
Saw a rheumatologist the other week and he thinks I have Rheumatoid Arthritis - getting some more bloods done (my Rheumatoid Factor was 305) and seeing him on Tuesday 8/6 again.

I feel rubbish at the moment to be honest so its good to get a diagnosis obviously (if its RA or something else) but i dread having a chronic and auto immune conditionÖ my mum had Fibromyalgia so I have seen what fatigue and pain can do to you. I am only 50 but my body feels like its going on 80 and I am soo tired all the time. Apart from this I also have Hypertension, Postural Hypotension, IBS, GORD (reflux), Drye Eye Syndrome and floaters/flashes in my eyes.

So feeling a bit down - wonder how it will impact future trips to Disney etc. If anyone else has RA - how do you cope?

Also - what questions should I remember to ask the rheumatologist when I see him next week? He mentioned potentially giving me a steroid injection - can I drive home after that?
Oh bless you. Iíve been through similar and had psoriatic arthritis confirmed. No, Iím pretty sure you wonít be able to drive after a steroid injection - where are you having it? Mine was in my shoulder and I had to immobilise for a good few days.

You will probably be started on a DMARD such as methotrexate and/or sulfasalazine Ö try not to worry, these are well researched, tried and tested drugs and you will start to feel better with the right combination.

Sending positive vibes xx
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Old 3 Jun 21, 08:14 PM  
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I've had it a few years now, I was initially put on methotrexate tablets which after a while the nausea became to much,I was changed to methotrexate injections which where fine for a while but again the nausea and fatigue floored me every weekend after taking it on a Friday night.
After discussions with the rheumatology nurses I have had a couple of weeks off medication, I have a telephone consultation next week to try a different DMARD

I am 53, work 32 hours a week as a school cook, I don't do much after work but what I do is pace myself

Once under control the pain eases just bad if I get a flare. I do try not to let it define me but I know I only have it mild compared to some
My mum had it but was very aggressive in her case

You will still be able to do rides just listen to your body and rest when you need to

You will be able to drive after your steroid injection

Most Rheumy doctors will start you on a DMARD drug as a first option and there are biologics that can then be added if they don't work.

Good luck for your appointment
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Old 3 Jun 21, 08:20 PM  
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rach19
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If you have a diagnosis of RA your consultant may prescribe medications to reduce your symptoms. These are called DMARDs and a nurse would counsel you prior to commencement. There are a few websites for RA that may be worth looking at such as versus arthritis, NRAS and ARMA.
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Old 3 Jun 21, 08:21 PM  
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Originally Posted by Col&Ali View Post
Oh bless you. Iíve been through similar and had psoriatic arthritis confirmed. No, Iím pretty sure you wonít be able to drive after a steroid injection - where are you having it? Mine was in my shoulder and I had to immobilise for a good few days.

You will probably be started on a DMARD such as methotrexate and/or sulfasalazine Ö try not to worry, these are well researched, tried and tested drugs and you will start to feel better with the right combination.

Sending positive vibes xx
Just to say Col&Ali and I have different answers to the steroid question

If you are getting a long acting steroid injection usually in your behind you are fine to drive

Steroid injections into the joints you need to rest afterwards so better not drive

I usually get the 1st every 6 months but mine have been stopped due to covid
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Old 3 Jun 21, 08:50 PM  
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I was diagnosed with RA seven years ago in my 30ís. My deterioration has been fairly quick.

I canít tolerate oral methotrexate but can take the injections easily. Iím currently on methotrexate injections and a new tablet (I canít remember the name but itís another DMARD) plus I had steroid injections last Nov and again this Feb and then a targeted steroid injection into two joints. With all of these medications Iím pretty much functioning. General (in the backside) steroid your good to go. If itís targeted then Ďideallyí you wouldnít drive hone and need to rest for 24hrs afterwards.

I swim a lot, when Iím a flare it really helps ease the pain and when Iím not the exercise is still really helpful to try and keep joints moving without weight bearing.

I take next to no pain relief as over the counter doesnít work and prescribed stuff gives me constipation and nausea so Iím no better off. This is mainly as I canít have aspirin based medication though. Ibuprofen did help (the teeniest bit).

I have travelled to Orlando several times with it and basically just ignored it as best I could. DH wanted to get me a wheelchair in Epcot on day but I hit the roof (over emotional and frustrated!) and refused (stupidly).

Moving forward, my knee is at the end of what medication can achieve so Iím waiting to see the orthopaedic department.
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Old 3 Jun 21, 08:52 PM  
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Thank you so much everyone for taking the time to reply. 😍 Its all a bit daunting so hearing from others is most useful and comforting.

I have no idea if the steroid injection (if I get one) is a short or long acting one or where I would get it. My joint pain is in wrists, hands/fingers and my ankles, toes plus my left knee. Its at a local private hospital (I have insurance through work) in my town so either 5 min drive or 30 mins walk away ( the other two who could drive me home are at a tennis match and a football match). I might walk back or take a taxi.

I spent 6hrs in A&E the day before yesterday due to chest pains which they concluded wasnít heart related but said you could get from RA?

I also take each day as it comes - I am lucky to be on leave this week and until Thu next week. Gives me time to rest up - I spent today in the garden in a sunlounger reading a book. I also have a stressful job in IT for a bluechip company so that doesnít help my tiredness either - think I am pretty run down to start with.

Great tip on the websites - will check them out thanks!
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Old 3 Jun 21, 09:46 PM  
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Itís much more likely youíre having a shot in the butt! I only got targeted injections after a few appointments with the nurse specialist and consultant after those joints deteriorated faster than expected.

Even on good days, try to rest. However, itís a balance. Rest and movement. Being tired is just part and parcel of it. I take Vit D tablets as well and they help a lot. Any other issues you come down with from common cold upwards will just feel worse and crappier because of the RA. I spent years just powering on but now Iím unapologetic about asking the RA nurses for help when I need it. They canít help me if I donít tell them whatís going on. My last generic steroid was because I rang between appointments as I could no longer weight bare on one of my knees and I had the steroid that day and some extra long term meds added to my batch.
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