MY STORY AND PONDERING MY NEXT MOVE

Hi there Crustykness and welcome from me too. I, too was diagnosed young at 15 and I'd led a pretty active life beforehand. I never waited for buses I just used to see how far I could run before the next bus came. I played tennis (to a very low standard) and I played the piano which meant a lot to me. Then RA rocked up. In my hands at first which soon stopped the piano playing. Then ankles, wrists, shoulders and knees joined the party. My knees were drained several times and steroids shoved in but these treatments decrease in success te more we have them. Twenty years in (because, back then, modern DMARDS weren't on offer) my joints had deteriorated so much that osteoarthritis had also set in to the extent that I needed knee replacements.

Even so, I consider I've been lucky. These are the complications of untreated RA and I've managed to escape most of them probably because I did, eventually, get on DMARDS. https://www.nhs.uk/conditions/rheumatoid-arthritis/complications/

So you see I find your statement

CRUSTYKNEES wrote:

I went back to the rheumatologist the other day and he wants to put me on DMARDS but i am very against it as my knee is still pretty useable its just very swollen, i don't think its worth the risk.

a bit odd. What risk? The risks are all from NOT taking DMARDS. When we do take them we are monitored very carefully with regular blood tests and any potential problems are identified before they become actual ones. All I ever had is low iron levels soon fixed with a short course of iron tablets.

So, in answer to your questions:

1. Nothing. Draining and steroids are, at best, short term measures. They will lessen the symptoms while doing nothing for the cause. DMARDS are not lethal. Untreated RA, potentially, is.

2. By now you probably have RA. ReA can mutate into RA.

3. The left knee has not 'recovered completely', it's gone into remission. The right knee has flared because it can. Sorry to be so blunt but that's the way with arthritis. It can flare anywhere at anytime. It doesn't follow any rules though it will flare if we're stressed and we make things worse if we smoke.

4. “herbal/diet/food/supplement/NSAID suggestions” – Sorry but no. If they worked this forum wouldn't be here. RA is caused by an overactive immune system which needs dampening down. Supplements will not do this. You will see lots of adverts for lots of stuff claiming to help. That's because none of them do. So it's an open market. To get the disease under control we need disease modifying meds. A good, healthy, Mediterranean-type diet will help. NSAIDS might help a bit with the inflammation but will do nothing to tackle the disease. And they damage stomachs so, if you want them, make sure you're also prescribed a stomach-protecting med.

But building up the muscle is a great idea whatever else you do or don't do. Find a good physio. I hope all goes well.

1) What alternative solutions to DMARDS could i initially take to try to offset the swelling? Surely having the knee drained every 6 months would be better than taking these lethal drugs every day for the rest of my life.

2) Do i have rheumatoid arthritis or is this just another flare up from reactive arthritis?

3) Why would the left knee recover completely and not the right knee?

4) Does anyone have any herbal/diet/food/supplement/NSAID suggestions that helps their swelling?

[/quote]

1) DMARDs are the absolute best and safest way to treat inflammatory arthritis. Repeatedly draining a joint and injecting steroids has a lot of risks including infections and severe damage to the tendons and soft tissues in the area. The reasons doctors offer DMARDs and not repeated drainage and steroids is because DMARDs are safer and more effective and they help reduce inflammation in your whole body and not just a particular joint.

2) You should ask this question to your rheumatologist. It is likely that it is not reactive arthritis anymore as you are being offered DMARDs and your problems have persisted for so long. Reactive arthritis is in a family of disease called Spondyloarthropathies. This family of diseases also includes Psoriatic Arthritis (similar in symptoms to rheumatoid arthritis) so it may be that you have that. Definitely ask your doctor for clarification though.

3) Arthritis is a complicated disease. Psoriatic arthritis often presents as not symmetrical i.e. pain in one joint but not in the same joint on the other side of your body so as I said above this may be a possibility. Again though this is another fantastic question to ask your doctor so you can be as knowledgeable about your condition as possible.

4) NSAIDs can be really good at helping with pain associated with arthritis so ask your GP or rheumatologist about any stronger NSAIDs you can try to help with your pain. I personally have never found any diet or anything like that that at all helps my symptoms.

Please make sure you talk to your rheumatologist about all your questions and concerns. It's clear from your post that you are worried about DMARDs and confused about your arthritis and having a conversation with your doctor should really help to address these issues. DMARDs are only ever recommended when the benefits outweigh the risks. DMARDs are safe drugs that can help to prevent further complications and issues arising from your arthritis (such as organ problems, uveitis, damage to the joints etc.).