Does RA start gradually or all of a sudden

[lonelyplanet]

As a 34 year old male with no family history of RA whatsoever, I have a 1 in 1000 or something change of getting it, but such is life. After having intermittent joint pains for the last couple of years I went to my doc. Then my blood tests my RF came back at 78 and CCP at 237…My doctor says he cannot diagnose RA yet because I have no joint damage when he feels my joints and the pain doesn't last for more than 2-3 days but I’m a 98% positive candidate for it in future because of the antiCCP numbers. While I don’t have pains right now the expectation and stress is really horrible. Any small twitch of pain I feel, my heart sinks with the apprehension that I've finally got this dreadful disease. This is really scary

[sylvi]

Ask to be reffered to a rheumatologist to get a firmer answer whether you have ra or not. My ra factor shor not be higher than 11 at my hospital so i would ask for that refferal.xxxx

[Beckywood89]

Absolutely insist on being referred. My RA came very gradually and my pain was the same as yours, 2 or 3 days in one joint then a break then 2 or 3 days somewhere else. After several months the pain was horrendous and debilitating.

I can't quite see the logic in not referring you because you have no damage to your joints. As far as I can tell, the whole point of treatment is to stop there being damage in the joints. I have minor damage in my knee but apart from that I have no lasting damage because I started a treatment. Be firm, get cross is you need to. RA isn't fun and as much as I hate to say it out loud, it's chronic, incurable and life limiting but with the right treatment you can be pain free

[lonelyplanet in reply to Beckywood89]

Its my rheumatologist that says he can't diagnose RA. He asked to see me in three months but come by earlier if the symptoms get worse. Thanks for sharing your experience. It's pretty painful but hasn't been debilitating yet and I'm really dreading the time the pain gets as worse as everyone says it is. I'm terrified

[flow4]

You really, definitely need to get referred to see a rheumatologist. Your blood test results do suggest some sort of inflammatory arthritis, and if confirmed, it needs treating to *prevent* joint damage! RA damage is erosive and happens inside the joint, so can't be felt until it's severe. To put it bluntly, it's crazy for your GP to suggest he'll wait until he can feel damage to diagnose - the aim is to stop any of that damage occurring!

It IS really scary - I empathise with that hugely, because I'm just recently diagnosed after years of uncertainty... But I can tell you that, in my experience, the uncertainty is more scary than the reality. Get yourself to a rheumy ASAP, and you'll probably find things get better for you. Good luck!

[Fis76]

Hi my personal experience is that I had intermittent flares then gradually deteriorated into constant pain over five years.

Look up palindromic rheumatism, you might find you recognise your symptoms.

my diagnosis now is RA palindromic onset.

I have met someone whose came on much quicker and I believe the nature of the illness is such that varies greatly in all ways person to person.

Have you been given any medication?

It is scary but there is so much that can be done and so much support available.

I hope this helps and wish you all the best

[RichardG]

Like you I have no family history of RA. Came on very slowly and started with index finger pain which I put down to being older than I was and climbing a ladder. took several years befor pain in all fingers and inability to make a fist. Insist of rheumatologist app as the sooner it is diagnosed the more effective the treatment ,and you need to get it before joint damage which is irreversible.

[magglen]

I would ask to see a Rheumatologis ASP. If you do have it than it is better to get treatment early so you can get back to a normal life... medication is very good these days. Go privately if necessary and you can afford it. Starting privately you can then be put back on NHS.

I started with stiff joints but put it down to old age as I was nearing 70 yrs at the time. I wish I had got help earlier as I was really bad from leaving it too long. However I am so much better now, with brilliant medication, and, at 80yrs, able to walk miles every day. Please don't worry.... there are far worse things to have wrong with you!

[Cornishrex]

i agree with the comment above about looking up palindromic rheumatism - that one, if it does not progress to full RA, is not erosive to the joints.

Ive been in the "not sure whether I've got RA or not" camp for a year now, and the rheumie was steered initially towards RA because of my anti CCP reading, but has now changed my medication and thinks the anti ccp might be there now because of palindromic rheumatism ...

[Cornishrex]

Having said that, you can also get positive anti ccp readings from Lyme disease. I'm in the process of being tested for that too....

[OhioBuckeye]

I am in the same boat, but I'm 36 year old female. I have positive anti ccp (227) and rheumatoid factor of 20. The rheumatologist I saw said I have the antibodies but not the clinical disease. The rheumatologist said it's impossible to know who will go on to get it because these numbers aren't something they screen for routinely in the general population. I don't think it's automatic that we will develop full RA, but if we do then it will be early and treatment exists. Chin up!

[lonelyplanet in reply to OhioBuckeye]

Sounds very very similar to me except my RF is pretty high too. What symptoms are you seeing? I have had bout of pains in one arm followed by the next about 1.5 years ago that kept me awake all night and was seeing it again. My fingers hurt on and off but its never too bad. I don't have any noticeable swelling just pain but all my blood work points to RA.

[OhioBuckeye in reply to lonelyplanet]

I haven't had many symptoms. I have no morning stiffness, no fatigue. No issues with my hands or fingers. I do occassionally have joint pain (sometimes in one knee or a hip), but nothing extreme or long lasting. I have had costrochronditis (inflammation of rib cage) that lasted a few months, but the doctor at the time though it was attributed to carrying my infant in a baby carrier. Which is still may have been. I haven't had that in several years. I sometimes have hip pain, which the rheumatologist said is likely bursitis. My dad had osteoarthritis and had double hip replacement at 45, so I worry that I may have damaged my hip running in the past. I am pretty active and have recently had some foot issues. This all began a few months ago when I started walking a lot (4-5 miles/day) and had some foot paint. Ultrasound showed bursitis in one of my toes. I have a deformed baby toe joint, which rheumatologist thinks is from previous break. The podiatrist suspected RA though, which is why I went to the rheumatologist in the first place and had the blood work done. I am seeing a new rheumatologist in December because her office is closer and I'd like a second opion because I was so anxious about RA and just wanted to make sure the toe joint issue wasn't related to RA. The rheumatologist I saw said if I develop symptoms for RA, she'd begin with plaquenil. I feel like I might exhibit more signs of palindromic rheumatism. And I feel normal, which is why I agree with the rheumatologist at this point - that I don't have clinical disease. I understand completely what you're saying about the anxiety. So much so I ended up taking some meds for anxiety for the first time in my life. I now look at it this way: I may never develop RA and if I don't then I've spent lots of time worrying for nothing. If I do develop it, the treatment early can put it in remission and prevent future problems. I feel good now, and I plan to continue to feel that way. I have to remind myself this sometimes, but I tell myself to let the specialist do her job and I will get the second opinion to be sure (and because I am a control freak) what are your main symptoms?

[lonelyplanet in reply to OhioBuckeye]

Interesting. I have more joint pains than you do for sure but no morning stiffness or swelling. I’m not sure I remember when exactly it started since I never really paid attention to my pains early on. But I can remember my hand hurting frequently from around 3 years ago. Most of the time I attributed them to gardening or opening a really tight jar but never really worried about it being anything serious. About a year and a half ago I had a bout of pains cropping up on shoulders and hands for a couple of months and then nothing. The GP I saw brushed it off as nothing. Then nothing but my hand pains for the next year, until another sharp pain on my shoulders this year leading to my latest visit to the GP and rheumy. I sure hope you are right and I can keep my RA at bay for as long as a time as possible. The wonderful support I’m getting from my family and this message board is making me feel much better again.

[OhioBuckeye in reply to lonelyplanet]

And P.S. for the first few weeks after all this happened, with every ache and pain I thought the same: this is it, I'm getting it! Happy to report that some zoloft/ time have helped with that and I'm not quite so edgy about every ache and pain b/c they have always subsided after a few hours/days. How long has this been going on for you?

[helixhelix]

Mine hit me like a train - I went from being a fully functioning human to a bundle of immobile pain virtually overnight. However, with hindsight I realise that I had had all sorts of signs in the previous year's but just hadn't bothered about them. But then the pain in hands & feet started getting more noticeable and I went to GP, who eventually referred me. But by the time the appointment arrived (a couple of months) it had hit...... However, there is a happy ending as 5 years on I'm in remission and living normally apart from a shed load of pills every day

Anyway, it sounds like your rheumy is not dismissing you out of hand if you have a 3 month follow up. But at your next appointment do ask whether it would be an idea to take preventative action like a low dose of hydroxy. Maybe you can frighten it off? And do think about what triggers active RA like stress & smoking, so maybe paying attention to how you live could also keep it dormant?

[OhioBuckeye]

It is interesting helihelix, what you are saying about low does of hydroxy. I am in similar situation as lonelyplanet. I have read up as much as I can about palindromic rheumatism (I haven't been diagnosed with either RA or PR, but have antibodies), and it seems like sometimes PR treated with methotrexate in order to try to prevent it from developing into "full blown" RA. That is something I'm going to ask a new rheumatologist about at my appt in December. The previous rheumatologist operated from the belief that if you don't have symptoms/clinical disease, then to what end is the medication if you have no pain/damage? Obviously two schools of thought.

I'm glad you're functioning well and have been in remission, despite the heavy drug load

[ktk51]

I had no joint damage I had pain in my foot and it got so bad I went to my doctors who did blood tests he then phoned me three days later saying he was make in appointment to see rheumatology when I seen her she said I was CCP positive and started me on my first lot of meds due to this I believe I have no joint damage up to now I still have the pain and ups and down's I. Believe you should ask your doctor for a referral to put your mind at rest

[lonelyplanet]

Update. Fortunately, I'm having fewer and fewer symptoms this last 3 months! I just saw my Rheumatologist again and he certified that I don't have the clinical disease and treatment wouldn't be appropriate. However, he still thinks RA might be in early stages and I would eventually develop it given my RF and antiCCP. I'm just trying to enjoy my life until then and am all set to welcome my baby this month.

[flow4 in reply to lonelyplanet]

Congratulations on your approaching new arrival!

I am guessing from this outcome that you are not in the UK...? The guidance here is to treat early and hard, so with your blood test results and hand pain, you might well be diagnosed and treated already, even without other symptoms - though you would very likely have further tests (such as a hand ultrasound scan) to look for other signs.

If you get other symptoms, please don't delay going back to the rheumy. I know it's hard to come to get your head around the idea of having this disease (I have only been diagnosed for a couple of months, and I still struggle to believe it some days, especially since I am 'sero-negative' (normal blood tests)). But RA is *supposed* to be an invisible disease these days - the whole idea is to catch it and treat it early, and so prevent any joint damage. If you avoid doctors because you are afraid of diagnosis (as so many of us are or were - it's understandable) there is a real risk you will miss the opportunity to catch this disease early and protect yourself from damage... On the other hand, with early treatment, you can get the disease under control before it takes hold, and you stand a pretty good chance of being able to carry on enjoying life as you are now, or even better!

Sorry if I sound like I'm going on about this. I feel strongly about it because I was *not* diagnosed early (mostly because of my normal blood tests), and as a result I have deformed hands and feet which I might have avoided if I'd had early treatment...

Good luck!

[lonelyplanet in reply to flow4]

Thanks! As you and others have rightly warned, I absolutely want to jump on this as soon as possible. Only reason I've not gone to a second Rheumatologist is because my symptoms have eased instead of getting worse over the last 3 months so my Rheumy might be right in not prescribing medicines before the symptoms are more obvious. But yeah, there might be a difference in how things are done in the UK vs the US and that worries me a bit sometimes because I've seen a lot of research online on being aggressive early. I'm going to the Stanford university hospital in California which is known to be a good hospital so I can only really hope they know what they are doing. It is tough to believe isn't it? Few months ago I'd never heard of Rheumatology or rheumatoid arthritis but here I am, waiting for the disease to start and diagnosis to roll in. Hopefully thats delayed a few years if not months. How long did your RA last before you had joint damage? Hope you are doing well now that its finally diagnosed.

[flow4 in reply to lonelyplanet]

Thanks. It's early days, but I seem to be responding to meds and I'm definitely better than I have been for a few years. It's hard to say when it started because it came on gradually. Problems with my feet, for instance, go back a couple of decades. I was already having some other problems in the summer of 2011, but it was a very stressful time for me, so I thought that was the reason. I remember a convo with a friend in the autumn, when I said I seemed to be getting worse although the stress was much better. My GP at the time was very dismissive, and things were complicated by the fact that I also have hypermobility syndrome/Ehlers-Danlos syndrome and early onset osteoarthritis, and had severe hip/leg/knee pain, which turned out to be because I needed a hip replacement! It is indeed possible that in 2011-14 my symptoms were indeed stress + OA + HMS/EDS, not RA. I changed GPs in autumn 2013, and the new GP quickly identified that I needed surgery, and also referred me to rheumatology because I had other symptoms. During 2014, all my attention was on my hip, and I overlooked other symptoms. But I expected to be 'fixed' after my hip replacement in May - and in fact did improve for a few months - but then my recovery stalled and I started to get worse and worse. I had special walking sticks with ergonomic handles because my hands were already sore, but by autumn 2014, I noticed my thumbs were visibly deformed. I grew a bursa behind my right knee. Then over winter and into 2015, I developed one inflammatory symptom after the other, including some swelling, tendinitis in lots of different places, and IBS. By the summer I had developed little lumps or nodules on my fingers, wrists and arms, and larger swellings elsewhere. My GP referred me back to rheumatology. I had a couple of episodes of acute/dramatic eye inflammation while I was waiting.

Sorry this is such a mammoth reply! I sort of had to describe it and work it out myself to answer your question! I guess the short answer is, I have had mild symptoms that may or may not have been RA for at least 5 years, and dramatic symptoms that were definitely inflammatory - despite zero/normal inflammatory markers in my blood tests - since about autumn 2014.

[munchybunch in reply to flow4]

I have very high rf and other blood tests which point to ra. Do u know the names of the preventative mess that I should take? I have no symptoms st all except tingling in my hands Thanks

[lonelyplanet in reply to munchybunch]

Nothing! As far I know RA cant be prevented although it can be managed. Your symptons maybe years years away even if at all you ever do develop it

[Em13 in reply to munchybunch]

I was given hydroxychloroquine to hopefully stop or delay the progression from palindromic rheumatism to full-blown RA, and later had sulfasalazine added. With no symptoms or damage but positive anti-bodies, the rheumatologist classed mine as "early, non-erosive RA with palindromic presentation". Like Lonelyplanet, I live in fear of every little ache or pain!

[Juliachoo]

Please get referred & get on the meds, the longer you leave it the more chance for your joints to become inflamed & consequently damaged! You are quite young & need to stop it turning aggressive, good luck!