23 years old. no firm diagnosis . apparently seronegative.!?

spritchard91

Hi everyone,

My names Sophie. Im 23 and for the last 2 years i have been waiting to see specialists in regards to my joints. It started 2 years ago, i had fluid on my knee. It wasnt painful at first but i still went to the doctors just incase. I was told that it should clear up by itself as i had probably knocked it. Then after a month or so i still had the fluid but it was now starting to hurt / stiffness. I also noticed that i couldnt straighten my right elbow (which i still cant) as there was fluid on that too which again is extremely painful. I was then put on the waiting list and to this day they still dont know what it wrong with me. I have had tests for ARTHRITIS but they have all come back negative. I now have really bad back pain, jaw pain and my knee and arm are still full of fluid and very painful. Its getting me down and i really dont know what to do.
The specialist seems to think its SERONEGATIVE ARTHRITIS. Has anyone else experienced this??? He wants to put me on Methatroxate but i dont want to take it as he isnt even sure how long i will be on the tablets for and if they will even work. The side effects are horrendous and i feel that until i have a firm diagnosis i dont want to take the risk.
No one has told me whether this is something i have to deal with for life or whether after being treated it will be cured.

Please someone help or give me some advice as i feel like im getting nowhere.
Day to day life is a struggle and i would love nothing more to carry on dancing and performing but this is holding me back.
Im also having stomach cramps and loose stools which i think could also be caused by this/ along with taking all these tablets.

im too young for this X

[Deleted User]

Hello Sophie

Welcome to Arthritis Care Forums. As moderators we are here to help with any problems you may have on the message boards.

There are lots of lovely people here with a wide range of experiences with arthritis and the problems of living with the condition. Just join in wherever you like you will be made very welcome.

Although this message board is specifically for younger people it may be that your queries will be answered more quickly by posting on the 'Living with Arthritis' forum.

I look forward to seeing you posting

best wishes

Moderator AC

lulubell69

Hi sophie
I was 34 when I was diagnosed with sero negative RA. It came on very quickly, my left knee, then right and then almost every joint in my body within weeks. The pain and stiffness were horrific, and I had to pay private as my gp wasn't interested insisting I had tennis elbow!!!!
I'm afraid RA (rheumatoid arthritis) doesn't go away on its own and there is no cure but there are some 'wonderful' medications to help control it. The side effects can be quite daunting however, it doesn't mean you will suffer from all of them or indeed any of them. You need to weight up the pros and cons- can you live with the pain and stiffness and lead a relatively normal life on no medication. Very, very few people with 'true' severe rheumatoid arthritis can, and you have a choice, you don't have to. You are well monitored when taking meds and many go on to live a full and productive life with little or no pain. Over time I have been on all the major drugs, some worked some didn't, and I haven't suffered any major side effects, other than anaphylactic shock twice although this is quite rare.

I'm afraid RA can strike at any age, even babies, but it is imperative that you see a rheumatologist ASAP to avoid long term damage to joints.

Any questions feel free to ask.

Take care
Lesley

spritchard91

Aw thanks for your prompt reply Lesley.

First of all they said reactive arthritis as I'd had an infection but now they think seronegative.
Is there a specific test for this? Or is that why it's called 'negative' as all the tests show I'm fine on paper.

Also is seronegative and RA the same thing??

stickywicket

Hello Sophie and welcome from me too. Right, let's try to sort out a few things.

First off, they do know what's wrong. You have sero-negative arthritis. There are many forms of inflammatory arthritis though most people have only heard of Rheumatoid (which is what I have). Rheumatoid is usually sero- positive but even that can sometimes be sero-negative. There are many perople on here with a diagnosis of sero-negative arthritis. Sometimes that's all they ever know. Sometimes (maybe some years down the line) something will happen that will make a more precise diagnosis possible. Or, maybe not.

It makes no difference. The medication is the same and we really need to take it because, without it, we continue to deteriorate. There is never any guarantee with medication. Some work for some and others for others. We often have to do one or two trial runs before finding what works for us. I, personally, have done exceptionally well on a combination of methotrexate and hydroxychloroquine for about 15 years now. I've had no side-effects. Most people don't. But, legally, they have to warn you of the potential side-effects.

There is, unfortunately, no cure for arthritis. With luck, the medication will hold it at bay and you will feel tons better, if not wholly better. But that will be due to the medication. If you stop taking it things will get worse again. If you don't take it at all then your joints will suffer permanent damage.

Unfortunately, you are not too young. I got RA at 15 (and I've had a good, fulfilling life). I think the youngest patient on these forums was around 18 months. It's so tough on parents.

As for the tummy problems – I doubt it's connected though, if you're taking other medication, it could be connected to that. Maybe ask your GP.

Another term for sero-neg arthritis is spondyloarthritis. If you click on here http://www.arthritiscare.org.uk/PublicationsandResources/Arthritisbasics/Typesofarthritis and then scroll down to near the bottom, you'll find some info on it.

Good luck. I know it must be hard if you've hitherto been healthy but you really do have to accept that you have arthritis and it has to be dealt with.

spritchard91

Thanks for your reply.

It is tough taking it all on board.
Will I have to continue taking methatroxate for the rest of my life?

They did however think I had reactive arthritis as before any fluid I'd had an infection.

Could this still be the case maybe?

stickywicket

I'm sorry, I didn't spot your reply to Lesley before I posted earlier so I didn't know of the original diagnosis of Reactive Arthritis. This rises as a result of an infection and is usually short-lived. It seems it was originally felt you had this but that now that it's gone on for so long it's more likely to be Seroneg. Arthritis.

I suggest you read up on both forms and see what you think. I gave you the link earlier to sero-neg. Here's one for Reactive Arthritis. http://www.arthritiscare.org.uk/AboutArthritis/Conditions/Reactivearthritis

Please feel free to come back and ask any questions. And / or, you might like to contact our Helpline people.

lulubell69

Hi Sophie
Sticky has answered your questions very well.
If anyone asks, I always say I have RA as no one has heard of sero negative arthritis. It is treated in the same way and it has the same damage, pain etc.
You have a long road ahead of you. Do some research, accept help from others and keep in touch.

Take care
Lesley

spritchard91

Thanks for the advice.

One more quick question, when I find the right medication the suits me and it's under control, will all the fluid on my knee / elbow go? As it's been there everyday since 2013.
Or will I have to keep on getting it drained all the time?


Why us eh?

stickywicket

I don't think any of us can answer that, Sophie, and maybe the docs can't either. There are lots of 'maybes' and few firm answers with arthritis. The only thing that can be said with assurance is that, if you have sero-neg, and maybe if you only have ReA, things will deteriorate much more quickly without a DMARD (Disease Modifying Anti-Rheumatic Drugs). Side-effects are only potential and suffered by only a few people. We are monitored closely with blood tests all the time we're on the meds so that these potential problems are picked up even before we notice anything wrong.

Please keep asking questions as they arise – here, if you wish, but you'll get more answers if you post on the Living With Arthritis forum.

As to 'why us?' I'm afraid there's only one answer - why not? :roll: