Newcomer. Please help

[mavin]

Hi, can some one tell me what is remission, and also who tells you what your levels are.

I was given a blue book when I was first diagnosed with RA 6 years ago but no one has filled it in. By reading your blogs it has made me realise how little I know about my treatment of RA. I am new to computers and found this site by accident. Thankyou

[Hidden]

Hi Mavin & welcome to you. I have only been on here myself about a month. Its a gr8 site & everyone is so helpful. Ive learnt alot about RA from reading blogs, questions & the tags they are really helpful. Keep well xx Alison

[Hidden]

Hi Mavin,

Welcome to our site. As for remission, I think that's when for some reason your RA symptoms reduce or disappear by themselves, or as in my case, and with several others on this site, your symptoms become very much less or disappear with adequate drugs. Also that your inflammation markers from your blood tests are significantly lower and back within the normal regions.

I, too have had no books to fill in but get all my answers from my rheumy nurse or Gp re levels etc.

I'm sure someone will be along shortly who may be able to give you a better answer.

All the best

Carolyn

[SaraF]

Hi,

Here is a link that has everything relating to RA in one place webmd.com/rheumatoid-arthri... which you may find of help.

When your in remission you would be told by your Rheumy/Nurse or more possibly from yourself as you will know how you are affected with everyday tasks.

Don't be frightened to ask them to explain everything, if they are not willing to or you simply don't find you are getting along with them then look into swapping your consultant or even hospital as I have found a great deal of difference in various areas of the country.

You can find details out of hospitals and consultants here at Dr Foster drfosterhealth.co.uk/ have a search and see if your consultant is listed

I have recently changed my consultant and also hospital as I was unhappy with my treatment, not listening and it really did take me to a very low point until I took control of my condition, did some excepting and found people that wanted to help and work with me, at the end of the day this a disease that we have to live with and need to be in control of with their help, not the other way round

Good Luck with finding out about your condition and finding out about you!! Sometimes the journey is understanding us, and how we can adapt to the life we have now.

Take Care

[helixhelix]

To me remission is quite a wide term that means different things to different people. I think as patients we often consider it to be when we have no symptoms whatever, pain and so on so can go back to living a normal life. But many doctors just consider that if the drugs are controlling the RA so that you have very low disease activity then that would count as being in a medically controlled remission, and if you can stay like that without drugs then would also be in remission even if a few symptoms.

Re getting results, It depends on how who is involved in monitoring your results. If you get your bloods taken at your GP's surgery then they would get the results and you can ask them for them. And if it's at the hospital, then ask the rheumy nurse. They would probably copy them to the GP eventually, but can be a bit hit& miss. Polly

[fastball]

My rhuemy nurse gave me my blue book with a book explaining mtx. I have my blood test done at Gps and someone there fills in my book. The chemist should ask to see it as i agreed to having b.t. to make sure my bloods are ok. If i dont have b.t. they could refuse to give me mtx.

I would say ask at GPs for some one to fill yours in and see what happens.

chris

[Hidden]

I don't have a blue book but I just ask my GP receptionist for my test results verbally the day before I take my MTX - not every week of course but once a month when bloods are taken. I only ask about my ESR and check my liver enzymes sometimes. If there are problems my GP usually phones to let me know but otherwise I monitor myself and have learned almost everything I know about RA and the blood markers and drugs from this NRAS site.

I don't think it's everyone's way to do this though. I am Hypothyroid too and tried the HU site for Thyroid UK and found I just wasn't sufficiently interested and couldn't relate to the things being discussed or stressed over so I know very little about my hypothyroidism. I think we have to choose what aspects of our health to learn about or it would become a full time job - which might be a bit sad!

[shirlthegirl]

Hi and welcome to this wonderful site, i have a card, it is called a Rheumatology shared care monitoring card, which they record all my blood results in, You will find this site really helpful to you, especially for advice and for when you are feeling down, I have made lots of friends on here, I was only diagnosed Last September and due to this site i have been able to understand a lot about the illness, So keep reading and i know you will have the same experiences, looking forward to hearing your blogs, I was also new to a computer, this has also helped me to learn so don't be afraid to ask, we do talk about other things than the disease, Take Care Xx

[Hidden]

Hi Mavin & welcome. I don't know if this is something you'd want to do but perhaps you could post about the treatment you are on & how your RA is at the moment? Whilst nobody here can give you medical advice as such it would mean that you could chat with people about more specific things. I wonder if that might help kick start your search for more information.

I think you have definitely come to the right site plus I think even the layout is more user friendly than some online forums.

All the best to you,

Luce xx

[Josie2]

Hi Marvin & welcome

I dont have a card and have never heard of them.

Jo

Xxx

[allanah]

Hiya and welcome, glad u found us.it doesn't sound like you have had a lot of information after having RA for 6 years! I think you will find it here! Also the biggest help for me was the NRAS , the national rheumatoid arthritis society's helpline, it's on their website, thy are brilliant for info or just someone to chat too and I learned a lot from them!

So keep blogging and in touch, Axxxx

[sparkymac]

I have a 2-tone pink booklet in which my monthly bloodtests are written down. I keep the booklet and take it to all hospital appts. I can see at a glance what my BT results are and act accordingly if things arent right. Recently had ALTs of 71, 71, 89 and 167. Got it sorted PDQ. Now waiting for injections in shoulders to ease pain. Got a fairly good RA doc and nurses, which is a great help.

Find this site very helpful as well. Keep checking the blogs here, and good luck

[selina]

I am also "in remission" but don't have a clear idea what this means. At the moment I'm just pleased not to be suffering like so many of our brothers & sisters and try not to dwell on it too much. Good luck on your journey with RA x

[SaraF]

NRAS do a DAS Score booklet if you would like to keep you details together in one which is available nras.org.uk/help_for_you/pu... on this link, just take it with you to your appointments and ask for it to be completed

[SaraF]

rheum4us.org/rheumatoid-art... This also might be of use to some x

[Victoria-NRAS Partner Moderator NRAS]

Hi Mavin

Remission is basically when your disease is at a very low level of activity (though you wouldn't necessarily be symptom free). I sometimes use the analogy of a volcano when explaining it to people, in that RA is something that never goes away, but it can be dormant, like a volcano, but could erupt again further down the line, as remission can last for months or years, but you never know when it will become active again.

There are different ways of determining remission, but the most common is probably through DAS (Disease Activity Score). In addition to the helpful link that Sara's posted, there is also a section on this on our website, including videos:

nras.org.uk/about_rheumatoi...

I asusme the 'blue book' you mention is a blood monitoring book. Not all hospitals do these, and you may have to ask for your blood results to fill it in yourself, so perhaps ask about it next time your bloods are done. Being able to keep track of your blood results can be a helpful way of getting an idea of how well your condition is doing, though for some it doesn't always match the symptoms they are experiencing, so that needs to be taken into account too.

This forum is moderated by us (NRAS) but we also have our own website (which I've linked to above) and a helpline, so if you ever want to speak to our helpline team by telephone you can call us on 0800 298 7650 (Mon-Fri, 9.30-4.30).

I'm pleased you've found this site and already had some useful responses.

Kind regards

Victoria

(NRAS Helpline)

[mavin in reply to Victoria-NRAS]

Hi Victoria,

Thanks so much for your help. I am not so good at the moment,but have taken your advice on board. cant thank everyone enough dont feel quite so alone.

kind regards Mavin

[mavin]

Hi thanks for the speedy replies, I really appreciate it. cant believe the kindness of everyone thank you so much for all the help. your advice has helped,

kind regards

Mavin