anti ccp positive rheumatoid arthritis - anyone out there??

earthspirit
earthspirit Bots Posts: 278
edited 13. Jun 2012, 15:10 in Living with Arthritis archive
i spend a great deal of time researching my own disease looking for ways in which i can help myself naturally.

i am high anti ccp positive which means the current treatments are likely to be far less effective. it is the most severe aggressive form of the disease.

im actually struggling to find anyone in a similar situation to myself but would love to know what treatments people have tried and how effective they have been.

i currently have very little bone damage and no osteoarthritis but 200 flaring joints is doing my nut in.

i am amazed how many people with RA do not know this can even affect the tiny bones in your teeth and technically the joints in your skull which obviously fuse when you are a baby. there are even joints in the back of your throat which can cause great pain in swallowing. i had this years ago and some [Post Edited] doctor told me i was nervous and lots of people had problems like me.

anyhow i feel quite alone with this diagnosis as it is NOT arthritis of the wear and tear type and it is NOT osteoarthritis.

is anyone on this forum in the same position as me???

Comments

  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hello earthspirit.

    First I just want to say please don't feel alone with your diagnosis because, many of us RA'ers on here have sero-positive RA, as determined by positive rheumatoid factor and/positive anti-ccp. When I was diagnosed with RA 16 or so years ago the anti-CCP test didn't exist, so "rheumatoid factor" was what determined whether you were sero-positive or sero-negative. And whilst a high reading of RF and/or anti-CCP might be a predictor of future disease activity it may not necessarily mean that the drugs will be less effective. My RA was diagnosed as "agressive, erosive and with a poor prognosis" (although I didn't know that at the time) but with the help of the DMARDS and now the biologics, my joint damage is minimal. And my understanding is that some of the drugs have the potential to work better for those who are sero-positive - certainly that is the case with my current biologic (Rituximab). I know from your posts that you are having a really tough time at the moment but I don't think it will help you to get caught up" (not the right words, sorry but can't think of better ones) on the label of "severe, aggressive" etc because nobody can actually say for sure how things will turn out for you (which in my view is one of the most frustrating things about RA). I know you are not keen on the meds but have decided to go ahead with the Sulf - and that is a really postive step towards finding out the best combination of meds for you and therefore hopefully preventing or minimising future joint damage.

    I think you will find that there are many forum members in a similar situation to you so please don't feel alone with this. Personally I have had many (if not most) of the available DMARDS over the years and I am on my third biologic. And, despite my initial diagnosis, all of them have worked for me to some extent (either alone, or in combination) hence the minimal joint damage. Unfortunately there is nothing predictable about RA (except that, without the meds, it WILL progress) and something which works well for someone may do nothing for someone else - or vice versa - so trial and error with these meds really is the only option. Back to the not feeling alone with this - I reckon that whatever you do end up taking, someone else will almost certainly have "been there, done that and got the t-shirt" so there is lots of experience and support available to you.

    As to helping yourself naturally - I think that healthy eating, and looking after yourself is the best thing you can do - but that will only be of benefit in combination with the meds.

    Right, will stop waffling now - but please remember you are in good company and we will be here to help where we can.

    Tillyxxx
  • kathe
    kathe Member Posts: 183
    edited 30. Nov -1, 00:00
    So sorry to hear abour yours situation...
    You are not alone, we are many people that have artherist her... But i think that is verry impotant four you to gett cheched out and maybee take som medicin....
    I take biologic medicin, nasid and dmar drugs....Have a verry high activiti in my artherist .. I have tried many types of nasids...But not all of them had any effect. Now i take enbrel, methotrexate, relifex,paracet, and so on....I feel like the enbrel and methotrexate has an effect but not as i hoped for...So next time I`m gone see me reuma doctor I maybe going to tried a new medicin....
  • frogmorton
    frogmorton Member Posts: 29,898
    edited 30. Nov -1, 00:00
    Oh Earthspirit :(

    I am so sorry you are suffering so much and hope you are not feeling alone with this illness :?

    Unbeknown-st to you (and me probably) a fair few of the folks on here are sero-positive and some have found it very very hard to get the disease under control. Most do in the end though with different combinations of medications etc. I have no idea why some people respond better than others. A few start out sero-neg and have become positive over time too.

    There is a theory that the reason they may 'appear' easier to treat is only because their illness has been found sooner. A lass on here told me this once and I held on to it as one 'positive' about being sero-negative because the downside is often actually getting help when 'they' can't see evidence of your disease, but you can feel it!

    Can I just reiterate what Tilly has said, PLEASE don't feel alone. We are here and we do care and we will support you on this road all we can.

    Love and HUGs

    Toni xxx
  • earthspirit
    earthspirit Bots Posts: 278
    edited 30. Nov -1, 00:00
    thanks to you all again for replies.

    when i am xrayed there appears to be very little bone damage but huge amount of inflamation.
    although the pain is awful it is the trapped neck nerves restricting my ability to move my arms and the shortened tendons preventing me straightening my knee that are getting to me most.

    im really fighting against the mobility issues. i think that its dumb that you only get physio for a few weeks. it should be at least till there is some improvement, where it is shown to be helping.

    going private didnt help.

    i keep telling other people that it is hard to live with the restrictions but ive got both arms and legs which are virtually useless apart from typing and driving lol. the desire to do some yoga stretching is an ulbearable as the need to scratch my back now & again. i can do neither.

    when i get back to london from aberdeen the first thing im doing is signing up for some health club with a hot tub as i feel taht hydrotherapy & physio were what were working best for me. its my lack of movement and ability to excercise which is making the disease worse, if that makes sense.
  • resusjan
    resusjan Member Posts: 290
    edited 30. Nov -1, 00:00
    Hi,

    Sorry to hear you're having a tough time. I also have an extremely high Anti-CCP and was told by my rheumatologist that my RA was "severe and aggressive". This was last year and it totally freaked me out.

    However, I did what the rheumy told me, took all the meds she recommended and things have improved. I am currently taking sulfasalazine, methotrexate, leflunomide, planequil, folic acid and B12 injections. Whilst having minor aches and pains, I have been flare free for almost a year now, nothing has got any worse, yes, some more joints hurt but not enough to stop me doing anything.

    I still ride my horse, I work full time (both days and night shifts), I've just finished a masters degree and started a new job. I truly beleive I wouldn't be able to do all of this if I hadn't started on the medications recommended by the rheumatologist.

    I am not someone who likes taking medications and wouldn't even take paracetamol for headaches before all of this. But, after talking it over with my GP, and other specialists, I decided that the important thing was to start treatment before any erosive joint damage started.

    I know, things will eventually progressive but, for now, I'm OK.

    I really hope you get some relief from the pain soon.

    Best wishes
    Jan