Diagnoised Yesterday with RA....Mor questions...sorry

L1985

Hi everyone

Well yesterday I had my first appointment with the rheumatologist who was lovely and said she is certain its RA I have. She said that my inflammation levels were not very high but as the bloods were done in February and things have got alot worse recently she said she wanted to repeat all bloods. The bloods in feb showed negative for arthritis but the doctor still thinks I have it....is this possible?

Im pretty certain the bloods done yesterday will be worse then feburary's ones as I hurt in my knees and wrists now when in feb it was just my fingers.

Also it is possible to have swollen joints which dont hurt? The doctor said my little finger joints were swollen but they are not causing me any pain.

I have to go back on wednesday to discuss treatments but I was told I would have to inject myself which seems very extreme to say she said my bloods were not that bad. Does anyone else inject themself and is it as bad as it sounds?

Im due to have my thyroid removed in october time due to graves disease and the doc said I would need a course of steroids to take before the op to stop me feeling poorly after.

I was told that once on the right medication the RA can be sent into remission and I shouldnt get any problems from it? Is this true or just said to soften the blow of been told I have RA?

Sorry for all the questions

xxxx

stickywicket

Lots of stuff here, L1985, much of which I can't help with but....

I was diagnosed long before all this positive/negative bloods stuff took off so I know little about it except that, according to what I've seen here, quite a few people seem to have arthritis with negative bloods.

Again, I'm trying to remember a long time time back, but I'd say yes, it is possible to have swollen joints that don't particularly hurt at any given time.

I don't do injections and I don't think they're usually the first port of call but, if you have other health problems, they may be a factor.

Remission with RA is an odd, unpredictable thing. The right meds may well send it packing but it can also happen entirely on its own. However, don't take a chance on that. I only know because I was diagnosed before DMARDS arrived on the scene. I certainly wouldn't pack them in now on the off-chance.

I do hope the medication will make a big difference for you (Though most require a few weeks, even months, to properly take hold.) Take care.

barbara12

Hi L1985
It really is a minefield this Arthur, I have OA at the min, but twice I have had raised levels of inflammation, I do know that everyone is different when it comes to meds, so I do wish you well with it all, sorry I haven't helped much.
Oh and a very warm welcome to this lovely forum, you will get more information of here then you will of your GP.

tillytop

Hello L1985

I am so sorry about your diagnosis - but at least now you have a diagnosis you can hopefully begin to move forward.

It is possible to have RA without arthritis "markers" showing in the blood tests which is why blood tests on their own are not sufficient for a diagnosis. As Sticky says there are others on the forum who have sero-negative arthritis so I am sure you will get some responses from them when they read your message.

Re swollen joints without pain - this happens to me so I know it's possible.

There are some RA meds which are injected. In my experience injecting yourself isn't actually as difficult as you might think and I don't think it would be an every day injection. Depending on the drug, it is likely to be a couple of times a week at most but some are only once every two weeks so not too bad at all.

I have had RA for nearly 16 years now and one of the drugs I had did produce total remission for the 5 years I was taking it so I know that it is possible (although total remission is, I think, quite unusual). Once you start the drugs though, it is likely that you will need to continue to take them to maintain any improvement.

We are lucky these days in that there are lots of drugs available to help manage RA so hopefully you will find something which helps.

For information about RA and the drugs used to manage it you might want to look at the "publications and resources" of this website and the Arthritis Research Campaign and National Rheumatoid Arthritis Society websites also have some good information.

Please don't apologise for the questions - we are always happy to help and usually, whatever the question, there will be someone who can advise.

Really good luck at the consultant next week. Please do let us know how it goes.

Love Tilly xxx

traluvie

Hi L1985,

Welcome to the forum.. I am one of many who's bloods were ok but have been told they have some sort of arthritis due to other symptoms and signs..I have been told i have inflammatory arthritis, this was only confirmed through bone scan, xrays and bloods were ok..There are many on here that do not have a deffinate diagnosis, as there is over 200 different types of arthritis and symptoms can be very similar,..Inflammatory arthritis can cover a wide spectrum of many other types..
In regards to swelling and no pain.. i get that too..
Regarding remission.. everyone of us is different..Different meds help different people, there is always hope.. so never give up..

Starburst

Hello and welcome,

I'm sorry to hear about your diagnosis. However, these days, treatments for RA are far better than they used to be. As for remission, I'm not sure what the statistics are but for a lot of people, the medication settles down the symptoms a lot. It can take a while to find the right one but don't be disheartened. There are people who do go into remission. Bear in mind, people you talk to on forums are likely to still be symptomatic and not necessarily a representation of all RA patients.

Is it possible to have arthritis that doesn't show up in bloods. It's called sero-negative arthritis and up to 30% of people with RA are sero-negative. I was told people who are sero-negative are often in the early stages of the illness and it's always better to get this illness treated. My rheumy says they are able to prevent damage this way. I have no rheumatoid factor in my blood but positive inflammation markers. They vary though. Everyone's course of disease is different.

I hope this answers some of your questions. If there's anything else you need, don't be afraid to ask.

Sophie

L1985

Thanks everyone its a big help hearing from other people going through the same.

Ill bear it in mind that the drugs take a while to start working. I have been given some anti-inflamatory's to take but they are making me feel so sick and not really touching the pain that im wondering if it worth it or if its best to wait until wed and see if they can give me something that doesnt make me feel so sick.

I have two small children (5years and 10months) that I need to be feeling 'normal' for them.

Glad to hear the injections wont be daily and are more likely weekly makes it slightly easier. Im getting worried now how the operation will effect the RA as the speacialist said it will make it worse in the short term. Im guessing the steroids will help to reduce the flare up?

xxx

stickywicket

I do hope you're taking the anti-inflammatories with food, L1985. It can make all the difference.

L1985

No I was told I didnt need to :oops: better try them with food thanks

barbara12

And another thing have you been given a stomach protector...mine is call omeprazole I think that is the right spelling but it is near enough.

valval

nearly all anti inflams need food and some also stomache protector if still having probs call doc and tell them they can prescribe them they do work well. arther is a right pain never the same two days in a row and never the same in any two people but lots of people do go into remision so she not just trying to soffen the blow it does happen we are here for any questions you have val

jackie1955

Hi hun, Sorry to hear about the diagnosis. Its scary, especially when if, like me, you probably just thought your problems were something that might pass. Anyway, a tip from me:-

Do not, I repeat, DO NOT, start looking things up on the internet! I did and really scared myself. Stick to this site, and you will get sound advice and all the information and support you need.

I must admit when I was first diagnosed I was on here all the time. I cannot thank enough the peeps who responded to my anxious postings...... and now, three years later, I live a pretty good life. Okay, yes, I DO wake up EVERY morning feeling about 90 (and I'm not lol). I take strong meds for the condition and maybe they are also possibly going to give me problems later in life but - hey I used to quite happily 'poison' myself in my youth with the old nicotine stick :shock: I have 'off' days, I can't do as much as I used to do before RA, I get fed-up with the aches/pain/fatigue and I've been in a flare since 18th April, (ironically only two days after my last consultant appointment) hence I'm swallowing painkillers like smarties - BUT I'm still ME

So, I hope for you that you get a great team of rheumatologists/nurses/phlebotomists etc caring for you (as I have - thank you Haywood Hospital, S.O.T.) and that you will respond to the treatment prescribed. Also, another great support was the local NRAS Branch, with monthly meeting's offering help, advice and support - answers to all those questions you want to ask! If theres such a group in your area, I strongly recommend you go along.

Good luck in your RA journey and try to remain positive