early detection

[smilelines]

When reading about RA they say early detection is important. I know it is important because you want to prevent damage to the joints etc. but is there another reason. Is it easier to control the disease and get into remission the sooner the disease is caught? And I wonder what early detection even means....a month, a year, a couple of years?

[AgedCrone]

Everyone is different....I was diagnosed & treated early in the late 1990’s.I was put on a Dmard from day one....& have done well with negligible joint damage...but others in the same position have been unlucky enough to need joint surgery.I think the answer is to keep in touch with your rheumy team, not easy in today’s climate, & accept it when the Rheumatologist advises you to continue on a drug a little bit longer.....even when you think it’s not working (unless of course the side effects are too severe to cope with) because if you give up too soon you can end up on a drug roundabout getting nowhere.

But in 2021 there are so many new drugs coming on line I wouldn’t worry too much.

I don’t think there is an optimum time to aim for...you will just know when you get there!

But do you remember what you read on here is often on the extreme end of the scale, so don’t imagine because you read one person takes XX drug treatment and it doesn’t agree with them that it won’t agree with you.

Because everyone really does need their own particular treatment.

[allanah]

I believe the protocol for RA is that best practice is to be seen within 12 weeks. I suppose the sooner they dampen the inflammation thr better for all parts of your body.Being honest though i was diagnosed in days ( long story) but it did take them years to get me controlled personally. Others however as you will have seen on here improve very quickly xx

[KeenGreen]

My current rheumatologist suggests you should certainly start treatment within six months, but preferably three as this improves your likely outcomes. However, I guess it's quite complicated to know when you actually have RA.

For me, after a fairly long period in remission my RA returned in 2020. I was referred fairly quickly (a month or so after GP appointment - is that fairly quick?) to a Rheumatologist who said she thought my RA might be reactive and we should wait and see rather than starting methotrexate. My RA got much worse and I couldn’t get an appointment, however the rheumatologist eventually wrote (via my GP) suggesting that it might take longer for the reactive arthritis to go away and I should stick with it. She offered me a review appointment a month or so after the letter. Having read about the importance of early treatment, I changed hospital and Rheumatologist and was diagnosed with RA (not reactive arthritis) and started on methotrexate immediately. Fortunately my RA is now just about under control. My symptoms started in early May and finally started methotrexate in September. Four and a half months is probably not the worst timescale for treatment, but I hope this illustrates how easy it is for treatment to be delayed. If had my time again I would have been more proactive in pushing for appointments and early treatment. I tend to understate things, which doesn’t help much in getting appointments/treatment.

[smilelines in reply to KeenGreen]

Very happy to read that you had such a long remission from it. Glad you got right on it with a new doctor. My first delay was when I was diagnosed with fibromyalgia. We have a triage system so I could not see another rhuemotologist for another opinion. My GP was sure that I had inflammatory arthritis but there was nothing he could do.

[Mmrr]

nras.org.uk/resource/making...

According to this NRAS article 3 weeks is the optimum time to be seen by a rheumatologist.

[KeenGreen]

I hope the treatment is going well, now you’ve finally started it. Best wishes

[Sheila_G]

I think early detection simply means go to see your GP as soon as you have symptoms. We all know when something feels different and not right. That is the time to go. I was very fortunate, I rang for an appointment, I saw doctor same day, he sent me for blood tests that same day and rang me the following day with results. Two days from an enquiry to a diagnosis. I wouldn't say that the sooner the diagnosis helps with remission but obviously you start your treatment sooner so preventing further damage.

[Otto11 in reply to Sheila_G]

Sorry to intervene but Omg! I can’t believe that. It took me 10 years to get diagnosed. One extreme to the other eh! X

[Sheila_G in reply to Otto11]

Absolutely. This was 19 years ago but I think I just had a great doctor who recognised the symptoms. I was extremely fortunate.

[Otto11 in reply to Sheila_G]

My GP recognised the symptoms but Rheumatologist sent me away 3 times. My GP asked me to go privately in the end. That was 21 years ago & still makes me angry x

[Sheila_G in reply to Otto11]

I understand why. I didn't wait. I rang for a private appointment with Rheumatologist and got one in 2 weeks. I then continued on NHS. I know it isn't ideal. I would have preferred not to go privately but that's how it is sadly. I was fortunate enough to be able to pay but appreciate that some people won't be able to. We should all be able to get the same treatment regardless. I must say that the Rheumatologist I saw was lovely and extremely attentive at my private appointment. It was a very different story when I saw him next on NHS. Very telling. Fortunately I have a Rheumatologist now who is the nicest, most caring and friendly person and makes me feel like I am her best friend. She is every bit as busy as he was. No excuse for him.

[smilelines in reply to Otto11]

I was sent away by a rheumatologist, too. So ridiculous. Mine offered no follow up appointment and we don't have private here in Canada. Ticks me off. They should be darn sure when they turn us away. I was lucky because my Dad's rheumatologist saw me as a favour even though it is against our triage rules. So 22 months later I finally got help. Ten years is a long time to wait for help. 😠

[Neonkittie17 in reply to Sheila_G]

Symptoms were there but never when I got to see the rheumy and and bloods weren’t showing it ..... I had a long delay in being diagnosed. Just given steroid shots. I had all the appointments then an isotope bone scan showed hot spots and finally my bloods were positive for RA.

[smilelines in reply to Neonkittie17]

isotope bone scan. never heard of that!

[Neonkittie17 in reply to smilelines]

It was back in 1995 so probably don’t do that (so much) now. It was a private scan I had done on BUPA which was like a giant photo photocopier coming slowly over you. Very low dose of anything, so safe and it showed images in screen of all the joints and where the hot spots of suspected arthritis were and they were exactly where I was suffering, them my bloods were positive for RA.

[ATSF]

I agree, my wife was diagnosed early and as it under control most of the time. My problems are the opposite, detected late resulting in severe destruction on my bones in many parts of the body including spine.

[Sheila_G in reply to ATSF]

I am so sorry for you. Your story confirms that early detection is paramount.

[JanetJAM]

I’m still waiting for an appointment after more than 30 weeks since my gp sent me for referral they said I should hear something in about a months time because of covid i presume

[Boxerlady in reply to JanetJAM]

That's awful! Have you tried chasing it up? I was referred pre-Covid and when it took longer than the recommended 2 weeks (!) my GP kept chasing it up for me and that definitely helped.

[mhlmom]

My initial referral took 18 months. In the end the NHS telephoned to see if I would be willing to travel an hour to a private hospital for an appointment (at their cost) as they simply didnt have the staff to see me within the NHS. As a result, it has taken quite a bit to get it under control with inevitable damage to my joints but it is under control now and Im doing quite well and can do most things. My hands look a bit odd but they function well. My advice would also be to listen to the rheumy - if they think you need meds, take them. Then listen to your body and be totally honest with the rheumy - write symptoms down, keep a diary and take it with you with a summary to your appointments. It was absolutely key for me that they escalated drug levels after the minimum time when they werent working - it could have taken significnatly longer to find the right one to knock RA on the head and I might have been very disabled by then. Im currently on a JAK inhibitor and its great!

[smilelines]

Thanks for your advice. I am going to start taking better daily notes to take to my appointments.

[Neonkittie17]

I took 9 months to diagnose for RA in on as it never showed in my bloods and in that time I got joint damage to my hip and knees. They would not give me any RA med until the bloods were positive for it. Sulphasalazine worked slowly so it was about a year before I started to improve.