To ask how your rhumatoid arthritis affects you or someone you know

[BuffyTheBuffetSlayer]

I'm sorry, posting for traffic as the health boards can be really quiet.

I have just been told by the physio that he believes I have rhumatoid arthritis due to pain in several joints plus being young and x-rays showing knee arthritis, so he made a referral to rheumatology.

But I know very little about it other than the generic info through Google. So I was wondering what early symptoms people experienced and how has it impacted quality of life later on? Is there anything I can or should be doing? Has anyone been referred with similar symptoms and it turned out not to be rhumatoid arthritis? My head is still spinning at reading 'degenerative disease' and 'fused joints'!!

@thecatneuterer

OP - the names of the two wonderful drugs my mum had (not at the same time) were TCZ and Baricitinib. Both completely stopped any symptoms of RA. It's worth asking about them.

Encouraging you've said baricitinib, as I'm about to start that one, as adalimumab has not worked.

There's a fair amount of hoops you've got to jump through and treatments to try first, before you'll be considered for biologics.

My dears, bless you all. I am sitting here weeping for my mum. She was diagnosed with RA in 1947 when she was 31 and I was 8 months old. Yes, I believe it's one of the auto-immune diseases. She took the doc's tablets, had gold injections, took celery seed and whisky (didn't work), stung her knees with nettles (didn't work), went to a faith healer (didn't work), lost weight and was anaemic and used to have iron injections. I have always understood it to be an all-body condition, not just the joints. Of course I support Versus Arthritis and I know that treatments are better these days and it is good to see you all supporting one another. In the big scheme of life it seems to me that there are quite a few illnesses and conditions which aren't mentioned much and I think RA is one of them.

I have it. I'm on a biologic called Cimzia. I live pretty much a normal life, you wouldn't know I had it. And the flare I had that sent me to the doctor was so bad I couldn't move at all.
I have had some periods of fatigue but I find the "power through" method is the best. I think that the most important thing is to push for biologics. They are literally streets ahead of other treatments. I was fortunate, I'm in Spain and was put directly onto a biologic as I was. 31 and breastfeeding at the time.

I promise it's not the end of your life as you know it and it could actually be the beginning of life with a lot less pain.

@BlossomOnTrees I don't think 15mg is the max dose, I think its 25mg. Also, if he doesn't already push to have the injectable version, I found this was a bit more effective.

Methotrexate can be paired with other drugs which often works well. Otherwise its a case of switching to another biologic or DMARD, its trial and error really.

[quote BuffyTheBuffetSlayer]@NeverDropYourMoonCup I developed what I think is rosacea on my cheeks over a year ago. My skin on my hands and other places can also be very dry, sometimes flakey. My DM said I had psoriasis on my head when I was younger but never that I remember.

Last year was full of investigation into numbness around my face and limbs. Since typing tonight the tip of my index finger started to ache and feels numb! My toes on both feet started to ache earlier.[/quote]
That's very important to say (and repeat the Psoriasis diagnosis each time until somebody listens,including 'I was diagnosed with psoriasis as a child, could that affect my diagnosis?), as PsA tends to present and respond differently to RA and medications; my second biologic was chosen specifically because of the good results it gets with PsA as it works on a different part of the immune system.

Another common thing in PsA are sausagey fingers/toes and particularly the top joints of the fingers.

My mum was diagnosed in her 50s after a frozen shoulder. She is on methotrexate and a biological both of which she injects. She was on the tablet form of methotrexate but it caused stomach problems. Most of the time you would not know she has RA it is so well controlled. She's nearly 80 and plays golf every week. However she gets incredible care with her hospital (can call and get an appointment ASAP if she has any pain or flare ups) and this is not the same with all NHS Trusts. The other issue is Covid and the fact that the medication suppresses her immune system.

Thank you all so much for sharing! And sorry for taking so long to reply, been a manic day with 2 ill toddlers.

@StrangeAddiction I am so very sorry, my heart breaks for your poor brother! You and your family sound like you are going through so much

It's reassuring hearing how medication (when it works!) can make such a difference. I was wondering, everyone talks about flare ups, and I have used that to describe my own pain to Dr's. What are your experiences of flare ups? I'm trying to gauge if what I experience are actual flare ups or not. How long do they last? Does it affect one area or everywhere at the same time?

When I see the rhumatologist, is there anything useful I should be asking? Or telling them about?

Thankyou for your suggestions @NeverDropYourMoonCup I don't know if I was formally diagnosed with psoriasis when I was little and my DM can be a strange one when talking about anything medical. It's like she is in total denial! I told her my recent MRI picked up the stroke I had years ago which was missed on the CT scan at the time and she just changed the subject!!! Also, I don't know if it's relevant, my DF's knuckles on both his hands are completely deformed and he cannot make a fist at all. He told me a while back that he had RA but when I asked my DM about it the other day after finding out I could have it she was totally dismissive and told me it was caused after he put his hand through a wired glass window??!! I'm going to ask my DF again, unfortunately he can be just as 'funny' over medical stuff as my DM.

Sorry for all the questions, can I also ask what led to your diagnosis? Was it something in particular or a culmination of things? I'm trying to understand how the physiotherapist came to the conclusion of RA when I have seen so many Dr's and had so many different referrals where they all have access to my notes. I feel like I have had constant 'symptoms' for years, and everytime investigations, tests, examinations all come back inconclusive - no idea why. The amount of times I have been told 'it's just one of those things' is crazy! Is that something that sounds familiar?

With my mum the onset was very sudden. One day she just woke up and found her elbow and shoulder (I think) had suddenly frozen. There had been nothing prior to that. She saw a private specialist and was on the drug trial within about a month of the first symptoms if my memory serves.

@BuffyTheBuffetSlayer

Sorry for all the questions, can I also ask what led to your diagnosis? Was it something in particular or a culmination of things? I'm trying to understand how the physiotherapist came to the conclusion of RA when I have seen so many Dr's and had so many different referrals where they all have access to my notes. I feel like I have had constant 'symptoms' for years, and everytime investigations, tests, examinations all come back inconclusive - no idea why. The amount of times I have been told 'it's just one of those things' is crazy! Is that something that sounds familiar?

My diagnosis was based on my symptoms and arthritic changes on my x-rays. My blood tests are always absolutely normal - I have anti ccp seronegative R.A. - so I don’t actually have the rheumatoid factor in my blood and regardless of how bad my flare is - my CRP and inflammation markers never raise up past a normal point.

My symptoms started suddenly starting with my knees - swollen, stiff and painful - suddenly couldn’t get in and out the bath tub properly. It’s moved to a lot of other joints since.

One of the main indicators for rheumatoid arthritis compared to normal wear and tear arthritis is that R.A. affects joints symmetrically (both knees, both hands, etc as opposed to one sided) x

Negative anti ccp seronegative*

I have RA, diagnosed in my early 40’s. Very unusual presentation with black hands and no swelling really. Blood tests showed v high rheumatoid factors. Been on highest dose of injectable methotrexate, hydroxychloroquine and sulfasalazine for 3 years. No money for biologics where I live. My feet are fucked and no sign of a rheumatologist appointment where I am as there is no funding and Covid! It’s a postcode lottery like everything. I still work full time and power through. I try to keep fit and do yoga and Pilates. I’ve refused steroids as I don’t want to get fat and addicted and take no opiate pain killers. I only take naproxen when necessary as I know there is worse down the road for me and I just want to accept the pain now and build my resilience. I wish I could get better drugs and run and be more fit but it’s not happening where I am. Good luck OP! Ps it took about 2 years for the drugs to kick in and start really working for me, as predicted by the rheumatologist. It’s a long haul and you have to be resilient.

For me I was having issues with my shoulders and hands and had repeat visits to my GP.

When I found I had problems walking and using my hands I pushed my GP further and had a blood test to check my Rheumatoid Factor and CRP. My CRP was high and. So was my Rheumatoid Factor.

In order to get a quick appointment with a Rheumatologist, I went private through work. Rheumatologist confirmed what blood tests were already saying.

DH also had inflammatory bowel disease which he is on octasa for. I think this is why he can't have the other dmard, can't remember the name, begins with H.
He is going to speak to his rheumatology team and tell them that the 15mg methotrexate is not enough. It's good to know he can go up to 25mg. May not work but worth a try.
He is struggling to walk and his knee clicks everytime he does. He also says he feels grinding and clicking in his neck and head

My stepmum has it and it’s fairly well managed through drugs but she still has times where she needs more support, walks with a stick.

Friend has it and drugs aren’t working. She’s in a lot of pain. It severely impacts her life.

I think you are all remarkable what you go through everyday and still 'power through'

@ANON3749 one reason I didn't believe it could be RA is that I have had so many different blood tests, full blood counts, inflammation tests etc while investigating my numb chin and nerve pain that started last year which all came back as normal. Even the neurologist I saw implied it must be all in my head!! I have never felt so humiliated and why I hate speaking to Dr's about new symptoms now. Physio said he was able to see it is RA because he hasn't seen me for a year so was able to see where I was and what symptoms etc I've had since.

@PhilCornwall1 Most of my pain is in my legs from my knees down. Is it normal for RA to not really affect the hands but other areas? I do get very stiff all over tho when trying to stand after a period of sitting.

@MrsKrystalStubbs so sorry, nhs postcode lottery is shit!! I just can't understand that system at all! I live near a major city so I am hoping funding for medication is OK. I think my issue is more likely to be 'when' I can see a rheumatologist. My gallbladder surgery was meant to be done 1.5 years ago with no date expected in the near future because of covid so God only knows how rheumatology waiting lists have been affected.

• @PhilCornwall1 Most of my pain is in my legs from my knees down. Is it normal for RA to not really affect the hands but other areas? I do get very stiff all over tho when trying to stand after a period of sitting.*

I certainly get it in my hands. If I'm having a bad flare, they can swell a fair amount. I'm starting on one now, but so far my hands aren't too bad. My knees and shoulders are the worst at the moment.

Have added a pic to show what my hand can look like in a fairly bad flare.

@BlossomOnTrees my left knee clicks quite badly when I walk and both feet and ankles click and grind especially when stiff. Amazing how I put it down to old age. I recently turned 40 and genuinely believed all 40yo experienced this!

@Boombadoom that's my worry, that medication won't work. I don't seem to experience pain medication like other people I read about. For example, I find tramadol to be a mild pain killer, it certainly doesn't touch bad pain, whereas it's offered for severe pain. I was offered it after my emergency c-section that went wrong and cried knowing it wasn't going to help. And altho I take it regularly I can stop with minimal side effects (I know I'm very very lucky here!). According to the pain clinic I have tried most other pain medications such as Amitriptyline, Nortriptyline, Pregablin, Pregabalin, Naproxen, Diclifenic for my plantar fasciitis and found they do very little for the pain. Opioid meds work best but only take a slight edge off the pain and do nothing at all if the pain reaches a certain point.

Sorry if I sound like an idiot trying to compare them to RA medication 🙈 I don't actually have a clue what RA medication does or how it works!

@PhilCornwall1 thank you for the pic, its really helpful to see what it can look like. WOW it looks so swollen!! This is where I'm not sure again because it's mostly my fingers that swell quite badly where I often have to remove my rings. They feel tight but not painful. Don't get me wrong, after reading what you all go through, the best thing that could happen for me is negative tests for RA and my feet and knees are just ruined from arthritis and plantar fasciitis! Sending hugs! I hope your flare up doesn't last too long x

Reading with interest, am having bloods next week to see what’s going in and am conflicted between wanting the results to show something so I know I’m not imaging it all and wanting them to be fine. Even if they are fine I am going to have to push for a referral though, just hoping GP not going to be resistant.

I’m losing strength in my hands and have been really struggling to walk,

The Medications are all different in what they act upon/mechanism, but the general principle is;

You're hitting yourself on the foot repeatedly with a hammer. Pain medications kind of take your mind off it a bit, but ultimately, you're still being hit on the foot with a hammer. DMARDs, Biologics, etc, try to take the sodding hammer away before you start hitting yourself on the other foot, knees, elbows and hands as well.

@PhilCornwall1

* *@PhilCornwall1 Most of my pain is in my legs from my knees down. Is it normal for RA to not really affect the hands but other areas? I do get very stiff all over tho when trying to stand after a period of sitting.

I certainly get it in my hands. If I'm having a bad flare, they can swell a fair amount. I'm starting on one now, but so far my hands aren't too bad. My knees and shoulders are the worst at the moment.

Have added a pic to show what my hand can look like in a fairly bad flare.

These are the joints it mainly affects in my fingers - I’m not having a flare at the moment however you can see some of them are slightly misshapen (I normally have VERY slim fingers)

Yours does look very swollen, however I must admit I’ve never had swelling there x

The good thing is you have the Rumatology appointment now, so if it is RA you can start finding the right medication. There is various ones available - usually start with Sulphasalazine or Methotrexate tablets as they are cheaper - but there are more options if they don't work. If it is RA I'm sure they will find something that works, even if you have to try a few. Once my medication kicked in I went from barely able to walk to being fine the majority of the time.

I have PsA rather than RA. So I don't get the symmetrical swelling. My fingers on one hand can swell up a lot and be hot and sometimes itchy. That happens most in cold weather and was always previously put down to chill blanes. However they are always swollen to so degree but not always hot. It is always just fingers and not my hand. Earlier this year my knee swelled up to the point I had to have it drained, but it was neither hot or painful. And my ankles regularly swell and I don't notice until I look at them.

Oh and I think Rumetology are pretty quick when you get a referral. My GP referred me on the Friday and I had an appointment the following week. That was very quick mind, but my GP said they don't like to hang about. He'd expected it to be about 2-3 weeks. That was only last year in 1st lockdown.

I'd try find out a bit more about your father's RA I'd possible - they do ask about any family history of it as it can be hereditary. I'd also mention the possible psoriasis even if you say you're not 100% sure, as that can help them look to distinguish between RA and PsA if its inflammatory arthritis. Good luck - I hope whatever the diagnosis you start feeling better soon :)

@NeverDropYourMooncup I love your analogy 😄

@Volterra that's exactly how I feel! Like I would love an RA diagnosis just to show everyone, and myself, that all these symptoms and random pains were real, but really hope it isn't RA due to how brutal it can be and what that means for my future quality of life. Goodluck with your tests. Are the to check for RA? Please let us know how you get on.

@ANON3749 yeh it's clear where the damage is on your knuckles. That's also where my DF's knuckles are deformed, altho now mid 60's his hands look awfully painful, like a half clenched claw and that's at rest. I have never really paid much attention to my hands but I will be now. I'm guessing that's something the rheumatologist will ask about?

Thanks @EarthSun that's really useful info, especially the estimated time frame, it was one of the things I was anxious about possibly taking months. Twice I waited 1.5 years for dermatology referrals and that was long before covid!

I'm definitely going to speak to my DF. I remember him telling me and my DP he has rheumatoid arthritis and so did his DM. Problem is he won't have an official diagnosis despite his hands being deformed. He hates doctors and avoids them at all costs so I know he would never have had his hands checked out. He's very much your old fashioned man's man who feels they just grunt and get on with it. I love him to bits but he's a pain in the arse for it! Took us almost 18 hours to persuade him to let us call 999 when he was having his 1st heart attack!!! He just wanted to take a Rennie and ride it out