A bit confused by diagnosis

Jo90

Hi
I wondered if any of you can contribute your experiences that may help me understand my diagnosis. After a particularly severe flare-up about 18 months ago, I went through a series of tests that resulted in me being diagnosed as having seroneg Inflam Arth. I can recall my first, minor flare-up 10 years ago. (Also have OA, and was mistakenly being treated just for that for last few years.) My rheumy prescribed hydroxy and etoricoxib and it has eventually come under control, I can breathe and I can walk, so, result !
I went to see him today and he mentioned that IA can disappear in time and even not require any meds to manage (once a substantial flare-free time has been identified). That is a massive shift in my expectation from how it was originally described. My pattern of flares has been pretty much every 2 years and each time getting substantially worse.
Can anyone enlighten me please - you all seem to have such a wealth of experience and considered contributions.
Thanks

constable

Hi Jo90,

You have found the right place to be, but I am unable to help you because mine is OA. But I know that there will be someone along who will be able to answer you so just be patient and I'm sure you will get your answer.

Good luck and keep us informed of your progress.

Karen xx

frogmorton

Hi Jo

Hi l think l have sero-neg too!

I get conficting opinions most tines l see the rhumatologist as well.

To be honest l am thinking they dont know, but l have been on hydroxy for a few years and added clochicine late last year. l feel pretty much under control myself, but think this might not always be so....

I hope that sopme others who know more than me may come along and give you more advice Jo

other than that can l welcome you to the forums from me - l hope you find them as helpful as l have.

Love

toni xx (typing without specs....sorry for any typos!)

Jo90

Karen and Toni
Thanks for the replies so far. Good to know you're out there and I'm not rambling to myself !
Jo
x

barbara12

Hi Jo
Dont worry you are not rambling to yourself, Im sorry I cant help with your question, but I have kerned how complex Arthur can be, Im still having test to see what going on, at the min it is OA.
I am sure more people will be along soon, and I do hope you let us know how you get on.
Barbara x

suzygirl

Hi Jo, I have inflammatory polyarthritis, called lots of other names depending upon which rheumy you see!!!

I have never heard that of Inflammatory arthritis, although I am not a doc. It does tend to wax and wane. Some people can experience a remission, some for a very long time. That may be what he meant.

Have you told the rheumy your pattern, and that it is getting worse? He may have been trying to give you some hope?

I will say that a lot of people once on meds, live a 'fairly' normal life.

I hope this helps somewhat.

Jo90

Thanks Barbara, Lynn and Suzy.
Crikey we are a mixed bunch aren't we ?! No wonder the specialists are a bit confused by us - but it would be nice to have a credible story. You may have a point there about my rheumy trying to sell me an overly positive view, especially given my flare pattern - last one resulted in an ambulance trip to hospital with the fear of my having had a heart-attack/collapsed lung/pneumonia ! And I still made it home in time for 2 hours sleep then getting my daughters up and out to primary school (after picking off the remaining stickers from the heart monitors they left on me )!

caprica

Hi, Im a sero-neg on hydroxy too.. year and a half now and thankfully doing well.

I think it can fizzle out for a few lucky people, my friend's mum had symptoms for 2 years after giving birth, and it slowly disappeared and that was 25 years ago. I know a girl who had it really badly in her teens but is now 30 and has very few problems, only a bit of pain here and there. I also know a woman who's in her 40s and has had it since she was born but she's not on any meds just now and to look at her you wouldnt know she had it. Then again I know quite a few people who havent been so lucky and have various degrees of difficulty with it. It can go either way I think, and meds hopefully can 'improve' the situation but I reckon at the end of the day it's the luck of the draw. I hope you get lucky!

skezier

Hi Jo,

Its good your now under control and some can as caprica (hi caprica nice to see you and hope your ok?) says some can indeed fizzle out but there is one that can really just go away but I can't remember which that one is.
just now. My brain seems to only have half a brain cell today.

I think its important your rumo leaves you on treatment for a while and well hopefully it will go away but he would need to be sure it has I think.

There are so many types and they all say different things as well and its no wonder it gets confusing. I hope your going to be lucky and some really are. Nice to met you by the way. Cris x

frogmorton

Reckon that sums it up then Jo!!!

No-one knows!!

Well done for getting the kids to school :shock:

Whatever happens what l can promise for sure is that thsi forum will still be here and you can count on getting support from others who know how you feel.

Love

toni xx

caprica

Hi Cris I'm doing really well thanks, I feel very lucky at the moment. I always lurk about, just been a bit quiet! Hope you're ok too?

madwestie

Jo, i have sero negative RA and my rheumy says that if you are sero negative then the outlook for you is better than if you a rf positive from the degeneration side of things. i am on Hydroxy and 25mg Methorexate and have been for 4-3 years now, there is no sign of me coming off the meds or any talk about ti going away, so perhaps he was just trying to say that you outlook is better than it could be. Although i am having mobility problems and neck and back problems at the moment they are OA related, my esr is still nto normal and my das score is raised so the RA is not fully controlled at the moment.
I think everyones disease is slightly different and perhaps some people will have long periods of remission and some will not have flares again but then again some do not whether they are sero negative or not.
Some people who are rf postive will never go on to develop RA either.

I hope the meds continue to work for you and you get a long flare free time.

Tracey

Jo90

many thanks to all you lovely people for sharing your experiences - and those of others that are in similar situations. It seems you really are my best source of information

Hope you're all well today

Jo
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Jo90

Well, it seems by rheumy hexed me when he said that it could all go away ! After not having any major knee problems for a long while, and my breathing finally clearing up in March, I am now having a flare-up. He flaming well jinxed me ! I have to admit to feeling a bit side-swiped. My knees feel like lead and have swollen a fair bit - they even feel like the joints are on backwards - if that makes any sense
Think I need a) a kick up the pants to get me to accept that it was very likely that I would still have flares and not fall for the fairytale that it would all go away and b) phone my rheumy nurse tomorrow and flag it up, so that my next, routine appointment is not 6 months away.

Any other suggestions (or virtual kicks up the pants!) welcome :-)

Jo
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frogmorton

Oh Jo :sad:

Gosh....that one caught you off guard didn't it??

l do hope it si a shortlived flare and goes away really soon.

No kick up the pants needed - suggest instead you take meds as prescribed and look after yourself if you can try ice or heat on those poor knees (wrapped in teatowel of course - the ice not the knees!!!!!!). Dont forget your anti-inflams.

Ring rheumy nurse as you plan to and be gentle on Jo.

Got any reading or Tv to catch up on to try to distract yourself??

Love and HUGS

Toni xx

PS do you wear glasses??

Jo90

Thanks Toni, yeh, am taking all my meds - after skipping my anti-inflams for 2 or 3 days over a week (after rheumy suggested it to ease icky stomach - and, after all, we were under the impression that I was better !!)
Yes, I do wear glasses, mainly when my lenses get uncomfy...is this question related to my forum name ?!
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