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Just diagnosed, blood tests

Posted , 6 users are following.

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32036aaaa

Hi Everone

My name is Paul, I'm 32 and was recently diagnosed with RA. Needless to say this has come as a big shock to me. My ccp is 130 and rf 25. I was told that a high ccp blood test can indicate a more likely chance of my disease being more aggressive. Could anyone tell me if this means I'm less likely to go into remission. Also I've just started on methatrexate tablets

0 likes, 11 replies

11 Replies

  • jo17130
    jo17130 32036aaaa

    Posted

    hi ya - I know what you mean. I was diagnosed in the summer with a ccp over 300 (once it is over 300 they don't tell you how much over which is strange!) and did a lot of Google searching to find out what it might mean. Yes, it can mean it might be more agressive but really thats a hint to the drs to get you on a medication that works well for you more than anything else. It doesn't indicate that the medication won't work well. You've as much chance of finding the route to remission as anyone else. I started on Methx tablets too along with hydroxychlorquine - just off them at the mo as I am swapping for injections instead as I was getting too much nausea. To plug the gap I've taken a short course of steriods too - its all very mix and match! Good luck getting the response you want from the drugs.
    • bob_2020
      bob_2020 jo17130

      Posted

      Ho jo i was diagnosed just after summer last year same as you and got put in MTX started of on 15mg now up to 20mg and funny thing is only felt slightest bit of nausea about twice since september since starting them was also taking hydroxychlorquine but was gettin some side effects on them...i go back to hospital this monday for to start another drug to work along side MTX just wonderin what drug they will start me on i am still in pain every day with my RA but guess drug is keeping it at bay to a certain point i am never pain free..
  • hannaballecter
    hannaballecter 32036aaaa

    Posted

    Hi  dont worry, I have been suffering from RA for 20 years and been on methotrexate most that time, with on period when I had to come off to clean my system of it sort of thing. methotrexate is a good drug for RA  just have your regular blood tests done, if you have caught the RA in its early days, as they did mine, despite mine being very agresive, it is controlled to some degree, I have had umpteen surgical proceedures as a result of RA related problems but in general although unable to do a lot of things I used to do and cope with, life is no where as bad as pre methotrexate and the days they did not understand RA as they do now.  dont panic.
  • Light
    Light 32036aaaa

    Posted

    I don't think so, Paul.

    Mine was descrbed as aggressive and I understood my rheumy to mean that i did need to act early on to prevent joint deformities... to treat aggressive RA with aggressive treatment, sort of...

    This seems to be what you're doing.

    Having it under control at the early stages is the most vital thing for aggressive RA.

    I have been in remission for about eight months and so far, so good.

    I wish you all the best with it....

  • lyy13133
    lyy13133 32036aaaa

    Posted

    Thing is, if the MTX is working why are you in pain? To me, the rheumatologists are an absolute bunch of quacks giving MTX because it is used as a way of preventing us from saying we have a disability and therefore saving the country money. This is why they are paid umpteen times more than other clinics. I'm sorry, but explore your options and try to get your body well before they give MTX. Make sure your iron levels are high, that you are taking enough pure omega to help the joints and bring down inflammation and taking vit B 12!to help the iron into the body. Change your diet by cutting out animal fats and dairy and bump up the healthy stuff and sometimes with RA there can be severe weight loss so monitor what is happening. Then check the options. If a drug is good, there shouldn't really be pain. A friend of mine has had RA 20 yrs and she has been having massage and has also increased her omega 3. Because she is feeling good she wants to reduce the meds and she has received a very aggressive "we know best" performance. They don't know what causes RA, they don't know how to treat it and they don't approach it individually so everyone is actually on a trial to see how these drugs work. I just wish we could occasionally be slightly more understanding of RA and realise we don't have the same type in everyone. If they could find out the types you have it would be helpful instead of just treating us all the same. I have said it before, I am now on Chinese meds and I there they have a range of 
    • Light
      Light lyy13133

      Posted

      Ivy, you are lucky the Chinese herbs are working for you. They didn't for me, as didn't a number of other alternative routes I tried.

      You may have had bad experience with your rheumies, but I don't feel it's helpful to berate all rheumatologists in one sweeping gesture to someone who is new to this disease.

      I have remained without deformities and have been greatly benefitted by both MTX and the dread prednisolone, both drugs I wouldn't under normal circumstances take if they were coated in chocolate!

      But serious diseases sometimes need serious treatment.

  • hannaballecter
    hannaballecter 32036aaaa

    Posted

    Muppet33, (very befitting)

    I dont know where you get your information from regarding RA but may I suggets you look up and read some of reports by Dr Clive Kelly from Gateshead Hospital Rheumatology he is one on the countries best rheumatologists and is my consultant and has been for 20 years. I have  very aggresive RA which is widespread throughout my body yet I have very little visible disfigurement because of the meds he prescribes. Methotrexate for many years and more recently a drop in the dosage of methotrexate but replaced by a twice a year Rituximab infusion. Like most RA sufferers I have peaks and troughs with pain and disabillities depending on the inflamation and bodily reactions too it. RA is not a nice thing but some people are their own worst enemies. As bad as my RA is I have little doubt I would be ten times worse had it not been for my Consultant.

    • 32036aaaa
      32036aaaa hannaballecter

      Posted

      Hanniballecture

      My rheumotologis suggested my raised ccp blood test may indicate it is an aggressive form of ra. I'm very pleased he has started me on methotrexate immediately as from what I've read the sooner aggressive treatment is started the better the chances of me going into remission are.I was only diagnosed last Thursday. Thanks to everyone for support and replies

    • lyy13133
      lyy13133 hannaballecter

      Posted

      Not actually someone with RA. Believe me, I lived with someone who lived with an aggressive RA for 56 years and after years of their nonsense refused their drugs!
    • lyy13133
      lyy13133 hannaballecter

      Posted

      I don't think having pain and disability and inflammation is successful treatment? Having non visible signs of arthritis but experiencing it suggests the drugs are not really working. This is a constant theme with RA and for some reason people keep saying the drugs are working. I am on chinese a medication  - no pain, no visible signs, no disability. And I have had RA over a year now. Prior to the medication I was really unwell. When told to take MTX I rejected it because my dad had RA and he refused the continuous lack of understanding via drug therapies until he was 86. 
    • hannaballecter
      hannaballecter lyy13133

      Posted

      Some years ago I met via a RA room on yahoo when the internet was new, a young female teacher from Japan GuFu City, un fortunately she was one of the casuallties of the Sunami a few years back but she, because the medication which is available to us was not available to her, used to take a horse medicine she was in so much pain, but I guess if the pain is not so bad for you not to take the meds, you really can't complain, believe me when the pain hits max, you will take anything to ease it.I suggets you forget all the worries of not knowing,  you are monitored for any adverse effects, I have been taking Methotrexate for almost 20 years and would do exactly the same again if I could wind the clock back, the worries of the million to one side effects are worth the million to one risks. Believe me. If you think your theory about drugs not working is right all I can say is you have never experienced the full pains RA can give you. Good luck anyway,  as always its your choice.
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