In the absence of any pain or obvious inflammation ca... - NRAS

NRAS
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In the absence of any pain or obvious inflammation can a joint still be permanently damaged?

Tavvy
Tavvy

Hi All. My 28yr old daughter has been diagnosed with likely RA about 5 months ago. She currently has no symptoms and is very reluctant to take medication. She has quite radically changed her diet, is getting more rest, taking various supplements etc and is feeling very well. I can understand her reluctance to start on the medication but my question is: in the absence of any pain or obvious inflammation can a joint still be permanently damaged? We are going on the assumption that it can’t. Her symptoms have mainly been in her knees and she is currently able to be very active including doing a lot of step dancing (a percussive form of dance so heavy in the knees and feet) without any pain, heat or inflammation she can see or feel. Has anyone found a definitive answer to my question as we have heard different things from different people. Thanks for your help.

22 Replies
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Hidden
Hidden

Hi. i am sorry to hear of your concerns regarding your daughter. i am wondering whether the diagnosis was made by a Rheumatologist following examination, history and blood tests, or was a vague suggestion by a GP. I don't think the word 'definitive' belongs to RA or other auto immune diseases but discussion with a Rheumatologist seems the best idea.

Tavvy
Tavvy
in reply to Hidden

Hi Norisa. I thought I had replied to you earlier today but I don’t see my reply in the thread. I wonder, did you see it? As you’ll gather, I’m new to this!

Hidden
Hidden
in reply to Tavvy

No, but don't worry! There isn't an expectation that all responses to posts will be acknowledged. Take what is useful, click on the 'like' if you wish, or move on to something that is useful.

Tavvy
Tavvy
in reply to Hidden

That’s weird as I def sent a reply from my phone. Anyway, yes my daughter has been given the diagnosis by a rheumatologist but she didn’t seem 100% sure herself so wanted a second opinion. The person she consulted agreed with her diagnosis but that was without meeting my daughter. I think the difficulty was that blood test results were inconclusive with somewhat raised RF but normal Anti CCP. Anyway, thanks again for your reply.

Can only give my experience. Mine started in my left knee when I was 19. Various medication and treatments over the years with periods in between with nothing (pregnant/breastfeeding x 4). Three years ago at 48 I had a TKR. Mine was often swollen and/or painful though. Everyone is different but if there are any signs any where else I would reconsider as during periods when meds did not work for me almost every other joint from toes to jaw took a turn to 'join in'.

Tavvy
Tavvy
in reply to farm123

Thanks for your reply. I will pass your experience on to her to add in to the mix!

farm123
farm123
in reply to Tavvy

Does your daughters rheumy department have a rheumy nurse as they often approach the situation differently and can talk through things in a way that is more relatable and helpful.

Tavvy
Tavvy
in reply to farm123

Thank you - that’s a very good suggestion. I’ve never heard mention of a specialist nurse - at present no one is monitoring her at all.

I think she needs to have a more detailed discussion with her rheumatologist. Her baseline at diagnosis will give some clues - whether she is sero positive or sero negative, whether her antibody tests were weakly or strongly positive, and how high her inflammation markers are. Is all if these are very elevated then that indicates (and it is only an indication) that her disease could be quite an aggressive one. And therefore it could be more important to treat it immediately. If they are near normal then perhaps a question to ask is whether she can be monitored and delay starting treatment until there are more distinct signs? Paying attention to lifestyle issues could well kick it into the long grass for a long time/forever.

If it is RA (and starting in her knees is odd) then it is a systemic disease, so the greater worry is that uncontrolled inflammation can attack organs and not just joints. Which you wouldn't necessarily feel straight away.

Tavvy
Tavvy
in reply to helixhelix

Hi there. I sent quit a long reply yesterday but it seems not to have sent. Anyway, thanks for your helpful response. Her blood test results from early this year showed raised RF ( about 34 I think but not sure if this is very raised or not?) but normal just about everything else including Anti CCP. She did have raised ESR but that returned to normal. The rheumatologist said this suggested a less aggressive form of the disease. She has also had an x-Ray which showed no damage to the joint (she has had knee problems for over a year now but only once in each knee), Unfortunately the rheumatologist seems to have very little time and especially for someone who so far, has not taken her advice to start medication. My daughter is not feeling like she wants to go back to her at present as she knows she will be unsupportive of her ‘alternative’ attempts to get it into remission and hopefully keep it there. I can understand that but feel she should be being monitored by someone as I think she would be prepared to take the meds if things were deteriorating despite all her efforts. She has just had some new blood tests (at her request to her GP) so it will be interesting to see what comes back. Sorry if this is too much info!

helixhelix
helixhelix
in reply to Tavvy

Sounds like the rheumatologist missed the training modules on patient communication!

I can see why your daughter is reluctant, as with these results, little pain and no obvious swelling it's a big step to start strong drugs. But if the GP is helpful in terms of keeping an eye and ordering monitoring blood tests then that's useful. Suggest she also keeps a good diary of any possible symptoms herself - not just pain/swelling buts days she has felt fatigued or flu'ey too. Would they be prepared to refer her to a hospital further away? Not necessarily now, but if results start to show any changes.

There are a couple of people on here, who may pop up, who had very minimal early signs. When they persisted they started on the mildest of the drugs, hydroxychloroquine, and that calmed things down completely for many, many years.

Tavvy
Tavvy
in reply to helixhelix

Thanks - a good idea re the diary. I think she’s already doing that but will check!

I can only comment on my experience, I was diagnosed at 28 and basically carried on as normal, cycling everywhere, swimming 5 miles a week, aerobics ( it was the 80's) . Nurses told me to take easy , but I felt fine and wasn't about to let this disease change my life. Then it all came home to roost in my 50's. Two shoulder replacements, both sets of knuckles replaced, waiting for 2 knee replacements. So in my experience I would say be circumspect and look for less stressful forms of exercise and take advice from the Rheumy.

Tavvy
Tavvy
in reply to Maggsie

Thanks for you reply. Did you start on medication from the beginning? Problem with stopping dancing for my daughter is that not only does she love it, it’s part of how she earns a living. I’m so sorry to hear about your more recent experience. Sounds quite terrifying to me but a helpful reminder of how RA can progress. If only we had a crystal ball!

Maggsie
Maggsie
in reply to Tavvy

Yes, I was lucky that the thinking had just changed to early aggressive treatment, I understand how your daughter feels and it can be very depressing to think about giving up the things you love the most, never mind that it's partly her living. I think part of me always felt, and still does to some extent, 'I'll worry about that later, I want to live my life now'. Mostly I don't regret it but wish I had slowed down a bit.

In the end it's her decision about the longer term risks and how she wants to deal with them.

Hopefully, the current drugs will keep her going and you never know what new inventions may turn up in the future to prolong her active life.

Tavvy
Tavvy
in reply to Maggsie

Yes, I’m ever hopeful that better drugs will come along in the near future. I have just given the motherly lecture about the need to slow down a bit and I think she was actually listening! We’ll see......

The only person who can advise your daughter is her rheumatologist. You say her diagnosis was "likely RA"........she should really have a discussion ASAP with her specialist to confirm whether she has it or not.

Unfirtunately RA is like a puppy .....It's not just for Christmas....it needs taking care of constantly....once damage is done there is no going back.

I was diagnosed in 1999.....started treatment straight away & my joints are as good as most of my peers.

Yes, I have had some nasty reactions to RA drugs.....but i could stop them ......there is no going back with damaged joints.

I know this is not what your daughter will want to hear, but a discussion with a Consultant Rheumatologist or even a Specialist Rheumatology Nurse will give her all the information she needs to make her decision,

Tavvy
Tavvy
in reply to AgedCrone

Thank you for your reply. Unfortunately the only rheumatologist in my daughters small town is not very sympathetic to someone who is, at present, not doing what she’s told. Although the rheumatologist was initially not sure of the diagnosis and wanted a second opinion when she consulted colleagues elsewhere they agreed with her and said it was unnecessary to see my daughter. She then told my daughter to go away to read up about the 3 most commonly prescribed drugs and decide for herself which one to start on having stressed that 2 out of the 3 would require immediate termination if she got pregnant! It was left that she would decide on the drug and then her GP would monitor her bloods. That was in January and there has been no contact from the rheumatologist since.

Hi Tavvy - My personal experience. As I didn’t have the obvious signs and felt fine most of the time however, I could see the underlying changes happening when comparing feet. Gradually my right ankle joint was shifting. Eventually, my right foot tendons was so inflamed which could be seen on the ultrasound - so although I thought it’s just a little pain at times, it was proving much much more, my consultant would show me the screen which was a sea of inflammation. I was told I had a high pain threshold so was not aware of the underlying damage being carried out over time. I would say again we are all different but don’t take no pain or obvious swelling too gently, keep on top of your blood tests etc. Wishing you well. Hessie

Tavvy
Tavvy
in reply to Hessie5

Thanks very much for sharing your experience. I’ll pass it on to my daughter.

Yes, I am in exactly the same situation. I felt somewhat achey back in February and was diagnosed with RA, with a high RF factor of 260. I went to one rheumatologist who immediately wanted to put me on methotrexate! I have completely normal blood work, no inflammation, no swelling .....just intermittent aches and pains. I went to a second rheumatologist, more senior, who said absolutely do not start on the toxic meds unless there’s inflammation or your condition or bloodwork changes. It’s been 5 months. No changes. She did say lifestyle is VERY important. I now take 5 to 10 mg of CBD oil every day, omega-3 oil, Tumeric, probiotics joint supplements and I work out regularly four times a week .....so the answer is, from my rheumatologist here in California.... it can develop in three months, six months, five years or maybe never, who knows BUT no, joint damage cannot happen unless there is obvious swelling and inflammation. I hope that helps.

Everyone loves to say early treatment is key but if you have no swelling and no inflammation in your body, according to your bloodwork and visual exam, then you have no joint damage ....so avoid the toxic meds for as long as you possibly can!

Thanks so much for that. I guess the main difference between yourself and dd is that she has had swelling of both knees (nearly a year apart) although both seem to have fully resolved. Her Anti CCP levels were normal and RF about 34 so not massively high. This is obviously a life long project....

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