Tiredness and ra

Hi, I'm trying to educate myself on this disease by reading the posts as often as possible. But I'm not relating to a lot of it and I'm not sure if that's because I'm very early in the disease or because everyone is different.

I'm not feeling the tiredness. What causes it? The ra itself, the act of inflammation, or the drugs?

Pre treatment, my crp and esr levels were 2.6 and 7. I only had some inflammation in the tendon sheath. It was the anti ccp and rf tests that's convicted me, at 91 and 100. So rheumy decided to kick in hard with MTX. I'm 6 weeks in now having gradually worked up to 15mg. MTX. Crp and esr down to 0.7 and 8, but I did have a steroid injection 6 weeks ago, and I suspect that dealt with the inflammation. No idea what my das score is as I'm currently between tracks - no longer being treated on private health but not moved to Nhs rheumy treatment until my first Nhs appt at end of feb. So no rheumy nurse either.

Not sure whether what I read on here is what is to come, or whether it's people's individual reaction to the drugs, or what.

Any thoughts / advice? Many thanks!

13 Replies

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  • Brilliant if you haven't got the fatigue! So really don't worry..... Not everyone does and it's usually a result of active disease ie the inflammation, and/or that person's response to drugs. As you've realised this is a very individual response.

    It looks as if you have a great rheumy who is doing exactly what the research recommends which is to treat very aggressively as early as possible, and in your case it looks as if it's been spotted very early before the inflammation has really take hold. So you have a great chance of getting it totally controlled quickly, and getting a normal life back ASAP.

  • Thanks helix. Your positivity both here and on all your other posts gives enormous encouragement to everyone I suspect.

  • Oh, and I'm going to have a "failed root canal" removed soon too. The rheumy may not be interested in causes, but I'm on a witch hunt, just in case anything helps. Gum disease and gut flora upset by repeated antibiotic courses following miserable caesarian section are at the top of my list ....

  • I completely relate to witch hunting (maybe wizard hunting too to keep this pursuit fair game?!).

    As Helix rightly (and she is usually right) says the earlier RA is addressed the better the chances are of some type of remission so you are probably able to be reasonably optimistic for yourself at this stage. The people who tend to have ongoing problems are those who aren't diagnosed in time for one reason or another - often sero negative - or for those like me who are extremely intolerant of drugs -or for those who present with a very aggressive onset of disease - for whom many of the drugs don't do enough.

    As I'm sure you realise already many of the regular contributors on here aren't actually typical of the majority with RA. Some are terribly unwell, some can't tolerate the drugs (me) and some have a very slippery type of RA which moves about shape shifting and eluding consultants and sufferers alike (also me!). There are also people who need this community having had their lives turned upside down by the arrival of RA, with relatively non-erosive, but still niggly occasionally nasty happenings, who perhaps live in a remote place, don't have a local NRAS group and like to keep in touch and support fellow sufferers (me sometimes!).

    I didn't have fatigue at all for the first few years either and then it landed like a big cloud - mainly because I've been unable to tolerate the drugs and have continued systenic inflammation I believe as my ESR is often up between 40 and 70. Also I don't sleep very well at all due to pain and insomnia so any trip away from home or deadline, including self employed or volunteering work and medical apointments will leave me boggle eyed and bed ridden for days, even weeks.

    fortunately I have a tenacious nature (like a terrier) and fight my autoimmunty tooth and nail as well as reading up and learnjng as much about it as I can. Not everyone can do this of course but it sounds like you can and will - good luck and I do hope you stay around to share what you learn on the way.

    Twitchy

  • Thanks twitchy. Like many others here I had a fairly raw period when I started researching the prognosis for anti ccp positive people. It all looks fairly bad even though I feel fine right now apart from slightly bruised feeling hands. But then I realised I have to get on with life and try to block that out, and instead focus on what on earth caused this citrullination of protein in the first place which in turn triggered the ccp antibodies. I'm sure it's not hereditary in my case. Gum disease, which I believe can include failed root canals, has apparently been shown to cause citrullination of protein in remote parts of the body which in turn triggers the anti ccp. I know it's been discussed on this site before.

    This looks to me like a disease with a whole load of potential different causes (maybe a whole load of different "diseases"), with broadly overlapping results albeit to differing degrees, and perhaps with differing chances of remission depending on each person's precise cause. I expect that's why they are having trouble pinning down a cause and a cure (although I note that a mouse was cured in a lab in Japan in few months ago and they are now broadening the trials with that ... I've set a Google news alerter for all things ra).

    If I go into spontaneous remission I'll be sure to report back!

  • Well I'm anti-CCP negative and last time he saw me five months ago my rheumy said he believed the prognoses for me might be quite good - although he couldn't predict of course because it can always return out of the blue. I have to say that the neurologist I saw ten days ago was not nearly so positive about the outcomes for me and I think, all in all, I'm pretty unlucky compared to people with loud and positive anti-CCPs and high Rheumatoid Factors (mine was positive but moved to equivocal - shame no one told my body properly!) and straight forward classic RA.

    The main thing in my favour re being taken seriously is that my ESR and CRP are always between raised and high - otherwise I'm sure I'd have been dismissed as a head case and that, for me, would have been extremely unlucky.

    Listen to this if you haven't already - it inspired me and many others I know (including my GP) to feel more positive about the future of RA treatment; bbc.co.uk/programmes/b04pv6kq

  • It was a Swiss mouse, not a Japanese one, poor little critters. They use the word cure, not remission ....

    bioquicknews.com/node/1719

  • Well I'm anti-CCP positive, and my consultant warned me that this could mean my RA was slippery. Which it was to start with, and needed to be hit hard to get it to back down. But the last time I saw her about 6 months ago she felt that I was now on course for a really good prognosis as I've been more or less stable now (apart from a few blips) for a couple of years. Yippee! Shows it can happen, so why not spontaneous remission as well!

    But I've also now stopped wizard hunting, and agonising about the "if only I hadn't done X", as really there's no way of knowing what the trigger was - and even if I did it wouldn't change where I am now. A useful exercise to do for a bit, but don't get too focused on it. In my case I think my triggers were stress (2 parents-in-law with dementia, and a sick mother) working 12+ hour days in a very pressured environment, and consequently smoking/drinking too much. So now I may have RA, but I don't smoke, hardly drink and live a very calm and healthy life and am a much happier person! So maybe it's been a good thing for me?

  • It is awesome that you do not have the fatigue!! I have PSA and I think the exhaustion comes from fighting the pain. When every move you make hurts, it leaves you exhausted and a lot of us cannot sleep b/c it is impossible to get comfortable.

    It is also that you have a rheumatologist that has a plan of attack!! Congrats on finding a good one first off!! Mine knew exactly what was wrong with me and thank goodness b/c if he didn't, I would have never sought a second opinion! I thank him frequently for not making me have to fight an invisible illness without meds anymore!

    I am so happy that you are on the right track!! I hope that it is all positive for you!

  • Thanks everyone. Your comments always help to force my perspective to change! The vagus nerve - now that's interesting, and weird. My mother would insist that the teeth tap into that nerve then. She insists that teeth problems cause all joint pain. She's almost toothless now, but happy

  • Hi - I am in similar boat as you!!! My anti-ccp is strong positive. My only symptom has been joint swelling in a few fingers which has been successfully treated with injections. When I received the news about my anti-ccp level, I started Internet research and all I found were dire outcomes for Anti-CCP positive people. Put me in a panic for months. Fortunately, I found doctor who eased my mind by explaining that the anti-ccp level is a marker. Does not always mean dire consequences. RA could be mild case and that's all. I was put on plaquenil which will hopefully keep disease from progressing. I took diagnosis as wake up call. Taking steps to simplify my life, eat healthy, exercise, etc. Only time will tell. I do have bad days where my mind focuses on what ifs. Trying to live in the present and not think that way. Wishing you the best.

  • :-) I was just reading your posts from yesterday whilst giving my baby his morning feed and thinking exactly the same thing !!! Good luck

  • Hi cornishrex,

    if you would like to call the helpline and have a chat about things then please feel free to do so:

    0800 298 7650 Monday - Friday 9.30am - 4.30pm

    RA is different for everyone and the way in which people respond to the drugs is also different. I have put a link to a section on our website that may interest you:

    nras.org.uk/about-ra

    You may also find our publication "Newly Diagnosed" of use:

    nras.org.uk/publications/ne...

    Hope this helps

    regards

    Beverley (NRAS Helpline)

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