Discombobulated

Well guys, I had a phone call from my consultant - who is amazing - less than 24 hours after the scan. She says there's no evidence of active disease in the results, neither is there in my bloods, so she wanted to talk to me so I could get used to the idea that I might be in remission.

This is what the first doctor told me (though they seem to have dropped the lupus) but she has done it in such a much better way so as she says, I can have time to get used to it. I'll get an appointment to discuss all this soon.

I dont know what to think. You struggle to accept that you have a disease, then you may have to struggle to accept that its in remission. I know that remission isnt the same as cure, and it leads to new uncertainties which I'll have to manage - what if it comes back?!

It also underlines for me that the early treatment is so important because it stops the joints from being very damaged. But I am rather surprised esp since I do have tiredness a lot and some aches and pains. I'm going to talk to my tai chi teacher who is also a physiotherapist to see what rebuilding exercises he can suggest. And I might withdraw a little from this forum - just a bit - because I need to work out how I am feeling in myself - I'm a terrible hypochondriac.

Just hope that this gives you out there some hope - things can move on - I am going to have a chocolate brownie and a cup of tea now and try to take in the news.

26 Replies

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  • Oh Cathie that's wonderful news - but I do completely relate to your reaction also! I would be exactly the same in your shoes. I think that is partly why I'm always pre-empting that mine is in remission or I don't have it really. Sort of a disclaimer in case someone turns around and says "only joking - you never had RA but we have at least learnt how the human mind works when its presented with a disease such as RA - and you were such a sucker and a hypochondriac to believe us so readily too!"

    I am so pleased for you in a fundamental way though and you do give me lots of hope as you will give others too. Re the habitual fear of it returning to devastate you - I still avoid too much water and swimming pools and woollen clothing even though I haven't had any eczema for at least 5 years. Old habits die hard and your consultant is going to try her best to reprogramme your mindset to enable you to move on, make art and hopefully enjoy the coming years very much indeed. Good luck and its no au revoir from me of course. Xxxxx

  • Thankyou Tilda. I will be lurking away in the shadows of this group, but I will have to try to disconnect myself a wee bit. For me it couldnt be better timing as paddy is packing up his flat in MK ready for his years sabbatical. In terms of training up, building up walking and tai chi too, will be priorities!

    My mother had asthma and then RA and I think she also had a period of remission. But the disease had already done nasty things to her joints so it wasnt such a hopeful time for her.

    XX

  • Oh Cathie, Fabulous news. I am so pleased for you and of course cant wait till I can blog the same news. You enjoy building up your strength and I suspect your new found freedom. lots of love and please drop in occasionally!! Axx

  • I will. It needs some readjustment - and I do have pains that werent there ten years ago, so I will need to be convinced! But my mix of mtxate and infliximab is all i've had - plus a much much less stressful lifestyle since we moved to Scotland.

    Its nice of people to be pleased for me when they're in pain etc. I hope it does manage to give some hope ! Just keep those joints OK.

  • great news, and yes, I can totally see why you would want to withdraw from the forum.

    I hope your remission does last, and you can keep up with any of the self help stuff that would extend a remission even longer.

  • Wonderful news !!!!!!!!!!! Xxx

  • That is a real step forward, so well done for perservering. And the fact that it's based on something solid, like an MRI rather than just a doctor's prejudices, does make it sound sensible. Do you think they'll keep you on MTX to stay in a chemically controlled remission, or slowly drop things to see if it's completely quiescent? But please don't vanish entirely, so positive examples are much needed too. Pollyx

  • Oh thats fab news for you. I can totally relate to the need for time to get your head around things.

    Hope it lasts a very very long time.

    Take care

    Jo

    Xxxx

  • Fabulous news Cathie, so pleased for you :-)

    Take care,

    All the best

    Jo xx

  • Well shiver me timbers good news x

  • Thanks i might be formulating questions to my dr when i see her! Will keep you all up to date if theres anything useful to share

    Xxx

  • Brilliant news Cathie :-)

    Love Janet xxx

  • Hello

    Great news about being in remission. I don't know if you are a member of NRAS but if you are have a look at the members forum. They have recently created an area for people in remission. Your experiences and feelings seem very similar to people posting there.

    Fingers crossed it lasts a long time for you.

    Becky

  • I didnt realise there was such a forum (not that I am there yet), but I think when newly diagnosed it would be good for all of us all to have access to this area in order to give us hope.

    This is good news. Thanks for letting us know of its existence.

  • I am a member but dudnt know about this forum so thankyou very much

    C

  • Go to NRAS.org.UK on the right hand side of the page there is a pink box which says members login. Once logged into the members area click on online community then members forum.

  • It's so nice to hear things like this there is hope out there

    Love Karen x

  • I'm glad so many people have taken it like this. There is hope. But I am aware that without the medication it might well come back, so I've gone on the nras forum thread for people in remission for advice. Its so helpful to everyone isnt it to be able to exchange experiences.

    All I can really say is that I was given anti-TNF within about three years of diagnosis - and you all know I am like a dog worrying a bone and harassed them a lot - and perservered with the loathesome / wonderful methotrexate. I still dont like swallowing those yellow pills every week they stick in your throat. But the initial reaction I had to them of chronic diaharroea (not easy when you're teaching and have to find excuses to leave the room!) has subsided esp with less stress. I still get a headache the morning after my dose. But I would say that unless the side effects are really disabling to persist because I feel now that I could have given up but I gave it my best shot. That's all you can do really isnt it.

  • Cathie

    This really good news and a lot to get your head around.

    I would be the same as you delighted with the news but worried about it coming back.

    Your news gives us all hope that maybe one day we will post that we are in remission.

    Please keep posting at times becuase we would like to khow how you are doing.

    Mary x

  • Ok I will. Have you heard about your scan? I think I heard quickly because my dr was going on holiday and she knew I was very concerned. But results are surprisingly quick

  • Cathie, That is really fabulous news! It will be hard to believe at first. The temptation to back off or drop the drug program will taunt you, but DON'T do it!! Your state of remission is due to the drugs you have had, so don't rock the boat. Status quo.

    And remission does not mean you don't have the disease anymore, just that it is not advancing. I am at the best I can be, but surely not without pain and disabilities. All the best for you! Don't be a stranger, have always enjoyed your blogs, your humour, and we need to know how our "old" friends are getting along. Love, Loretta

  • No worries about any of that! And med withdrawal i have been fighting since october and will only happen gradually! Thanks for kind wishes

  • Cathie, I'm absolutely delighted for you! Not only because you're in remission but also because - at last - you've found a consultant you can trust. Enjoy the next step in your adventure in life and all the good it brings your way, and have fun.

  • If you ever need a recommendation of my new consultant - she does seem to be very concerned about her patients.

  • Thankyou! I hope I wont have too much to report except of course progress.

  • Hi Cathie, excellent news. Are you going to stay on the drugs that helped you get in remission? My consultant told me that he thinks I am in remission (due to early Rituximab). I am still on MTX but haven't needed an infusion of Rituximab for about 2 years. He hasn't mentioned coming off MTX or reducing. I still have aches and pains and feel tired easily - the aches and pains are due to osteoarthritis I am sure and I think I get tired easily because I my stamina is not what it used to be.

    It is interesting that you mentioned that you think that a less stressful lifestyle has helped. I am sure that my symptoms have been knocked on the head since I have reduced my working hours significantly.

    I know what you mean about withdrawing a bit from the forum but It is almost like an addiction to see how everybody is. I might give the NRAS forum a whirl.

    Take care and let us know how you get on.

    Wendy xx

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