MY STORY AND PONDERING MY NEXT MOVE

CRUSTYKNEES

Hello everyone,

This is my story so far so let me divulge into it via a chronological timeline.

1) I was an active 16 year old with a promising football career when my knees became very swollen. Also my jaw became very stiff and even locked up sometimes. I had no idea what it was and after a year the doctor diagnosed me with reactive arthritis.

2) I had both my knees drained and had cortisone steroids injected in both. They both recovered well and I felt like i was on the mend and this awful experience which has lasted about 18 months was over. Over the next couple of years my jaw became less stiff and did not lock up anymore even though it still clicks and is a bit stiff to this day. My knees were fine but the right one was still a bit dodgy

3) I am now 25 and my right knee has been swollen for a good 4 years now and I have had it drained about three times but not to a good standard. I believe they were poorly executed procedures. 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. What i think should happen is a very thorough drainage of my right knee with steroids injected into it.

basically i think my treatment plan should go as follows:

1) Get the knee drained thoroughly meaning do not leave until there is no fluid left on the knee and then get steroids injected into it.

2) After that take all the supplements and least volatile drug to help combat the knee swelling up again. Also build the muscle up around the knee to give it a better chance of not swelling up.

So basically i have the following questions which i'd like answered please.

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?

Cheers everyone, hope to hear a reply

[Deleted User]

Hello and welcome CRUSTYKNEES to Versus Arthritis Community Forum

I'm sorry you've had to reach us at a very young age, unfortunately, arthritis does a have a wide age range. You have had/have so much going on it's know wonder you are beginning to ask questions of a varying kind. We have a many forum members who will be in a position to answer some of your questions better than myself, they are most helpful, supportive and offer some good sound advice.

Please of don't think me fobbing you off, in view of some of your questions and points raised, can I suggest you giving our Helplines a call (0800 520 0520), they are a fabulous team with a wider knowledge base of younger people with arthritis and problems associated with it.

I almost feel like I'm insulting you welcoming CRUSTYKNEES.

Enjoy the forum.

John

stickywicket

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.

dreamdaisy

I can't remember how many times I had both knees drained and steroided but I can eaily remember how often it worked because it never did. I had one steroid injection into my right ankle to treat the osteoarthritis in that joint which worked for three months then it all came back. I don't bother now.

I have the osteoarthritis because I started the meds for my auto-immune arthritis with far too little and far too late, all thanks to medical ignorance. I began in 1997 with one arthritis in one affected joint, now I have two kinds and forty affected joints and am sure that things could have been different. I am lucky, however, in that I was born with auto-immune issues, know full-well and completely understand the need for the meds, have no trouble with them or with taking them but, if I do know, how to deal with it. I learned aged eight that what I wanted from life was not relevant to what life had to offer and fifty-two years on that has never changed. I am sorry that you are only now finding that out.

The peddlars focus on ostearthritis with their potions, lotions and Revitive gizmos. That bilge and tat does nothing for those with over-active immune systems which cause the body to attack itself, this is what the meds are for, they reduce disease activity thus controlling and hopefully slowing its rate of progression and joint deformation. When I first went to rheumatology I was surprised by the contortions, twists, floppiness and immense nodules of diseased joints but I have none of that thanks to the meds. I now stand out as I am the one using aids to get about, every one else is fully mobile. DD

felicityh

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.).

CRUSTYKNEES

Thanks everybody for the replies, I greatly enjoy new information. i think having a conversation with a second rheumatologist is the best idea to maybe get another perspective.

Cheers all.