UNDERSTANDING TEST RESULTS for RA

trisher

I am new and have never writen before. From seeing my GP and her ordering blood tests, to then get refered to my local hospital, have blood tests there and x rays. Then seeing two more doctors and having an ultra sound. Then RA was diagnosed.This has taken just 6 weeks.
I have it in all my fingers, knuckles and the bones leading to the wrists. The doctors have told me that the joints are all damanged. They have put me on Prednisolone at the moment, as they are a little concerned as to how to treat me because I have a long complicated medical history. Plus they are also refering me to a bone doctor for surgery.
I would really like to know what you mean when you say your blood is *** and other test results are *** and something else. It all seems too much to take in, and I really do not understand. Is it important for you to know what your these tests are? I really could do with someones help.

woodbon

Hello Just to welcome you to the forum. You should find lots of people on here with RA who can help you. I have OA, so I am not able to give you the information you need, but I'm sure you won't have to wait long!

It has all happened so quickly for you by the sound of it and you must be feeling a bit of shock and worry. 6 weeks is no time at all to take in the diagnosis and to have to face surgery. At least your medics have acted quickly, so you will be getting the best treatment with no delay, some people have to wait quite a while for the diagnosis and get very frustrated.

I'm glad you've found the site, and I hope you find it useful. The helpline team are very good at providing information too.

Love and best wishes Sue

elnafinn

Hi Trisher

Welcome to the forum. It looks like you have loads of questions and why not? After all you have had to learn fast and take in an immense amount of information, let alone the shock of being diagnosed and talk of surgery in a matter of weeks. I have OA so am not able to give you answers to your questions, unfortunately, but others will see your posting and help you out.

It being a bank holiday weekend, the board has been a little quiet, with peeps out and about, chilling and enjoying the good weather that has been around so far, at least for us in Buckinghamshire!
Please be patient! Others will see your thread and give you some advice.

Should you wish you can call the helpline - telephone number is at the top, right hand side. They are very friendly, patient and will put you at your ease, should you be a little nervous. You can also type a message to them on the Helpline Zone.

Best wishes,
Elna x

livinglegend

trisher wrote:

Is it important for you to know what your these tests are? I really could do with someones help.

Hi Trisher

I have had RA for about 9 years and I like to keep track of my tests, but its not that important. Any unusual levels and you should be called in for further checks. You should be issued with a small booklet which lists your regular blood test results. The important ones will be discussed with your rheumy or nurse who can advise you about the result levels and what is expected and why. Don't be afraid to ask for more information.


Having said that, I am lucky to have a good rheumy and nurse who keep me up to date and take time to monitor my progress or more usually lack of it.

Joseph 8)

patsywat

I agree that you have been diagnosed very quickly. It can take much longer sometimes. Speedy diagnisis is importent. I note that you are only on prednisolone at present and I expect that you will be put on to a DMRAD (disease modifying drug) if your other health problems will allow. I was at a seminar on Saturday where the speaker told us that the old treatment method of starting sufferers on anti-inflamatory drugs and only working up to DMARDS if there was no sign of improvement has been reversed and now DMARDS are used as soon as possible. The longer it is before they are used, the worse the RA can become.
Best of luck.

jackie1955

Hi,
It all comes as a shock doesn't it? As has been said, the earlier you are diagnosed the better, so take heart from that.

This is a brilliant site, and I got lots of help and advice on here when I was diagnosed in January - when my mind was filled with questions and worries.

Regarding your question about test results, I have sent you a private message, which Ihope will be of some help.

Jackie x

vonski

Hi Trisher

Welcome from me too. Like the others have said it's good that you were diagnosed so quickly. Now you'll have to see which meds work best for you. Can't offer any advice with that sorry.

Love
Vonski x

lindalegs

Hi Trisher,

You poor thing, you must be feeling very shell shocked at the moment. :shock:

I've had RA for 23 years and I feel you have alot to take in. Don't worry about your bloods, it's not important for you to know as it won't affect the way you're feeling (in fact people with seronegative arthritis have no indicators in their bloods but they have all the symptoms of RA). We just talk about CRP, LFT'S, ESR levels and things like that because we can see whether we're responding to our medication or not - although our pain levels usually tell us anyway.

You may not get a record booklet with your blood tests straight away they only usually give you one when you start DMARDs like Methotrexate, Sulphasalzine etc. - I think Joseph's GP is an exception.

I'm glad you've posted, please ask us anything else you need to know - there's always someone on here with an answer.

Luv Legs

trisher

livinglegend wrote:

trisher wrote:

Is it important for you to know what your these tests are? I really could do with someones help.

Hi Trisher

I have had RA for about 9 years and I like to keep track of my tests, but its not that important. Any unusual levels and you should be called in for further checks. You should be issued with a small booklet which lists your regular blood test results. The important ones will be discussed with your rheumy or nurse who can advise you about the result levels and what is expected and why. Don't be afraid to ask for more information.


Having said that, I am lucky to have a good rheumy and nurse who keep me up to date and take time to monitor my progress or more usually lack of it.

Joseph 8)

Hi Joseph thank you for replying, it is appreciated. I have felt so alone and then I came across this site and thought I'd give it a try. The Doctor at the Rheumatology at the moment has given me a booklet about Sulfrazine is it? and another about hand surgery. I have to go back tomorrow for the test results of an ultasound that I had last week so maybe they will tell me more many thanks Trisher

trisher

sarahh wrote:

Welcome to the forum

Wow 6 weeks seems so quick you must be ready to burst with the info you' have. Have the docs give you any booklets/leaflets to try and explain it easier that aren#t full of medical jargon.

I've had ra for 3 yrs and still get some of the results mixed up

welcome to the group

Hi Sarahh thank you for replying to me. I think the reason for me being quickly diagnosed is due to my GP who decided to find out what sort of arthritis I had. Once she had the results she contacted the hospital straight away. I could not make a fist and it was getting worse I just thought I had arthritis. My GP knows I'm confined to a wheelchair. The doctors have said that I have had it a very long time and I did'nt know I had it. I thought the sweating I've had has just been through the other medical conditions I've got. They gave me a booklet about Sulfa and another about hand surgery. The Prednisolone was given to me to get the imflamation down. I go back tomorrow again. Thank you for your reply Have you got it bad? lol Trisher[/quote]

trisher

lindalegs wrote:

Hi Trisher,

You poor thing, you must be feeling very shell shocked at the moment. :shock:

I've had RA for 23 years and I feel you have alot to take in. Don't worry about your bloods, it's not important for you to know as it won't affect the way you're feeling (in fact people with seronegative arthritis have no indicators in their bloods but they have all the symptoms of RA). We just talk about CRP, LFT'S, ESR levels and things like that because we can see whether we're responding to our medication or not - although our pain levels usually tell us anyway.

You may not get a record booklet with your blood tests straight away they only usually give you one when you start DMARDs like Methotrexate, Sulphasalzine etc. - I think Joseph's GP is an exception.

I'm glad you've posted, please ask us anything else you need to know - there's always someone on here with an answer.

Luv Legs

"lindalegs" Thanks for replying it is so nice to know that I have some "friends" who can give me advice the doctor gave me a booklet on Sulphasalzine and a booklet on hand surgery. I go back for the ultra sound tests results tomorrow plus I'm being refered to a Proffessor tomorrow as apparently "I will be a challenge " and that's what he likes. so maybe they are going to put me on something then. thank you for your help x

slummymummy

Hi Trisher,

Sorry to hear about your new diagnosis of RA. I've got it too. It sounds like you must be quite advanced, if they're thinking about hand surgery already. And if you're in a wheelchair... Is that because of the RA, do you think? Or is it some other reason? What a shame not to find out sooner.

About your results, if you write down what they are, you can come on here and people will try to explain them for you (though I'm sure the docs will do that aswell, if you ask them).

Take care, hope you get some anti-rheumatic drugs soon.
Love, Slummy

trisher

Hi Slummy
Sorry I have'nt got back earlier I've been going back and forth to the Reumy clinic at the hospital. They have told me that I have had it for a long time but being I have been very ill they think the RA was masked by this. I did'nt know I had it. They are not saying too much about my neck at the moment.
They did mention putting me on Sulfrazine is it? plus I'm on Prednisolone and morphine for the pain.
The RA is not what caused me to be in a wheelchair, I lost both my legs above knee to another serious illness, I cannot walk at all.
How are you? Where is your RA, how long have you had it. What medication are you on? What do you all do have blood tests and they tell you something that is a level in your blood?
Thank you so much for leaving me a message take care Trisher

jackie1955

Hi trisher,

I did send you a Private Message - hope you've seen it?

I've just had 4th dose of Methotrexate, so had blood tests every week. Now go on to higher dose, blood tests in 2 weeks, then 2 weeks later. After that have been told I will just have to go once a month for blood tests.

The nurses assure me that if there are any changes in my results that I need to be aware of, which may result in a different dosage or different meds, THEY will tell ME. And I must "try not to worry or get too hung up about these readings"

I have every faith in them and am happy to follow instructions, knowing if I have any worries they are only a phone call away.

Jackie x

trisher

Hi Jackie 1955
I did get your p message and did reply to you but in case I did something wrong and you did not get it I took on board what you said, thank you.
So when you go on different medication you have to have quite a lot of blood tests do you? Then after that you are stable you have a test every month?
The doctor phoned me yesterday afternoon and told me that they want me to try Salafraz I cannot remember the actual name they said. Have you ever been on that? They said start with 1 tablet then 2 then 3 next week and then 4 the week after, in the meanwhile they will send me another appointment to go back again. I still have to take the Prednisolone and the morphine.
Have you got RA very badly Jackie?
Thank you for your help I hope we can stay in touch take care Trisher x

airwave

Hi,
You're very fortunate, I have been waiting years now and after my second negative result, they (nurse practitioner) have at last decided to seek more advanced help and send me to a Rheumatologist, we may even get some answers and I can get on with my life?

8) Its a grin, honest!

jenniet

Hi there.

I've been diagnosed a year now and I still have loads of questions, and there's normally some one who can answer, so keep posting.
I'm a bit confused by the drug you're talking about but here goes,with what I think you may mean!

I was started on sulfasalazine, one tablet a day for a week then 2 tablets a day for a week - one am and one pm, then 3 a day for a week and then 4 a day for a week ( I believe you can go up to 6 a day) My blood was checked every month. Although it was working a bit they then added methotrexate which I've slowly increased up to 6 tablets once a week, my blood was tested every 2 weeks until I had been on the same dose for a while and is now done monthly. I could still increase the metotrexate by quite a lot but at the moment I am doing fine! I also have other tablets but these are the 2 DMARDs for RA that I am taking.

It seems that different doctors have different ways of doing things so what I have just said may not be the same for you. Hope that helps.

jenny.

jackie1955

Hi Trisher,
I think you mean Sulfasalazine that Jenny explains about above.

Do I have RA badly? I suppose I would have to say 'compared to who'! I first really displayed symptons last Summer - although I didn't know that at the time. Then after various aches and pains I finally saw my gp when my fingers became very swollen - and I thought "theres something going on here" First blood test done on 31.12.08, gp phoned to say it was positive the week after - what a start to the New Year.

I immediately started looking into the forms of arthritis, and wished I hadn't! I imagined the worst case scenario. Once Ra was confirmed I found great advice on this website, and began to put things into perspective.

My blood tests were RA+ and Anti CCP+ - apparently if both of these are positive the arthritis is likely to be more aggressive. But in my favour is the fact its been diagnosed early and it can be treated aggressively with strong medication. Methotrexate in my case. I have been on this 4 weeks, and my blood tests are showing a reduction in the inflammation

As regards how RA it affects me on a day to day basis - well you go to bed with certain joints painful and when you wake up other joints are painful instead. It takes a while to get going, and I get tired very easily. Different joints will swell up, stiffen, give pain, but I am trying my best to stay positive. I can't do things I could do only a few months ago, but to dwell on that would only depress me - I try to focus on what I can do instead

Trisher, try and stay upbeat about this. It does take a while to accept you have a chronic, painful condition that is with you for life. You will have bad days BUT you will have good days too!

One last thing, be prepared for the attitude of others! Most folk find it hard to believe theres actually something wrong with you as you probably won't look any different than usual. My daughter has just seen me 'heaving' myself up from sitting, then steadying my balance, and she said incredulously "I can't believe how quickly its affected you". And last night my sister asked why I was off work at the moment :!: People really don't understand what its like, and will say "oh, I have a bit of arthritis" believing they know exactly how you feel

Yikes, I've nearly written a book here! See, my fingers aren't too bad today

Jackie x

ramummy

Hi Trisher,

Sorry to hear you've been diagnosed with RA on top of everything else. I got given a whole bunch of leaflets produced by Arc when I was diagnosed last year and one is about understanding the blood tests and things... There are loads of useful ones - they've certainly helped me get my head around things!

If you follow this link you should be able to get hold of some yourself....

http://www.arc.org.uk/arthinfo/patpubs.asp

Really hope this helps.

Ju x

trisher

ramummy wrote:

Hi Trisher,

Sorry to hear you've been diagnosed with RA on top of everything else. I got given a whole bunch of leaflets produced by Arc when I was diagnosed last year and one is about understanding the blood tests and things... There are loads of useful ones - they've certainly helped me get my head around things!

If you follow this link you should be able to get hold of some yourself....

http://www.arc.org.uk/arthinfo/patpubs.asp

Really hope this helps.
Hi raummy
Thanks for your reply. They gave me one on a drug and the other was about hand surgery which I'm going to need on my fingers but thanks for your help. I hope you keep ok
Many thanks trisher

Ju x