Inactive disease (rather than remission)

Well, guys after my long saga, I saw my new rheumy today. She is very chatty and doesnt hurry you at all, so she runs late but is full of apologies and smiles.

She confirmed what she told me on the phone which is that my disease is no longer active. So I'm off the biologics, but am continuing with methotrexate for the moment. I raised the possibility of injectable, given the positive comments from many of you. So I'm going to start on 20mg injectable weekly and may go down, depending on bloods.

Its taken me quite a while to come to terms with this new situation. I dont know how long it will last. My consultant assured me that if I had a flare and the old RA returns I will have an emergency number. If it does return with a vengeance I'll be able to go back onto biologics without going through the DIMARD route again.

So if you dont hear much from me its because I'm trying to get some distance from the disease. Oh yes and it doesnt mean that I'm free of osteo, which is bothering my knees at the moment. And I have a lot of scope to build up my fitness / exercise too!

Good wishes to everyone,

C

26 Replies

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  • Some distance from the disease sounds very nice! Sounds like you've got an excellent Rheumy plus very reassuring news about easy access to Biologics if needs be. But I hope you won't need them.

    I like the positive spin on needing exercise ..... I too have 'a lot of potential' in that area!

    Hope it all goes very well indeed,

    Luce x

  • Thanks for your comment and encouragement. My exercise programme isn't impressive but is probably achievable. To to my chi gong and tai chi exercises, and do a short walk as often as I can, 3-4 days a week. I'll try to extend as much as possible.

    On my rheumy, I think she's exceptional. She seems to enjoy seeing you and is very friendly, as though she's a friend. Important not to have unrealistic expectations, but I'm getting encouragement from the fact that my next appointment is end January 2014

  • congratulations cathie on your good news hope all goes well and you stay inactive . Good luck with your exercise take it easy at first you dont want to go spraining anything :) after you've had such good news. so happy for you. :) lena xx

  • Cathie I'm really pleased that a) you don't have active disease but b) you obviously have found a great rheumy whom you trust and who will continue to keep seeing you at regular intervals. It must seem quite scary coming off the anti-tnf infusions because, as I remember you saying, you were getting regular monitoring while on them and are then very well looked after. Having not been montitored much at all for my RA and having been left to sort a lot of things out for myself I can imagine how it would feel to no longer have the same support. But the support you do have sounds great and I think your mindset is very positive and will be favourable for your remission to continue - especially as you are switching to injectable MTX now. Good luck and please keep in touch even when not on here much and keeping your distance - you know where I am anyway! Tilda xxxx

  • Thanks guys, I will keepin touch, and am lurking so I know what you're up to! Latest dev is we've found a brilliant furniture maker in duddingstone, tilda, who is going to help us put some order in our lives. Even perhaps a plan chest for my growing body of drawings and paintings. Keep well

  • Brilliant - my uncle lives on old church lane - look out for a big old guy with a walking stick and tartan beret with a sporen when you're there! I did smile as initially read that you are having a plan chest made for your growing body - images of you crushing bits and bobs of yourself to slide into large flat drawers sprang to mind - and with all the tai chi and walking your body is going to be trimmer and more agile than ever soon I'm sure - no need to stick it in a plan chest though! Tilda x

  • Oh congratulations what wonderful news long may it last xx

  • Congrats Cathie. I am so envious but really pleased for you x

  • I put it up in the hope that people will derive some hope. It is possible. I have been on the edge, the only thing that has made a huge difference (apart from being lucky enough to have responded to the meds) is less stress. I had a very stressful job, loads of pressure not much recognition. Family worries - parents becoming very old, ill and dying and then daughter in a horrible divorce. But I've found things I've always wanted to do and have a really supportive partner - and daughter. So it is possible, I just hope that more people can get here - and stay.

    Incidentally there may be more than we think. My rheumy told me that recent figures showed that quite a lot of people in Fife had withdrawn from biologics because their disease was inactive. Apparently this was data presented at a recent conference.

    XX

  • Cathie good news for you and i hope that with the injectable mtx you will manage. At least you know if your ra flares up again it is but a skip and a hop to going back on them. I am pleased for you my darling.xxx

  • Thankyou sylvi. I hope you get a good outcome once you get on them too

    Xxx

  • Try asking for your med records, they cant refuse...good luck!

  • ???

  • sorry should explain, if you know where your disease is going you can prepare for the future, thats why youre medical records come in. The truth is there "in the pudding" as they say. Chin up!!!

  • Wonderful to read thankyou and long may your wonderful news continue. Good luck cathie xxx

  • that's great Cathie, and it sounds as if new consultant is on the ball and someone to have confidence in. Just one question, what in heaven's name is the difference between disease in remission and inactive disease? Pollyx

  • I think they mean the same, but inactive is a more precise way of saying it.

    Thank you all for lovely wishes. May they all come back to you.

    Xxx

  • How wonderful Cathie :-) so pleased for you. It's a fantastic feeling isn't it. I was on Infliximab in the UK doing amazing but when we came here, because I was in remission, I wasn't given it. Thought I would dive bomb but I continued on leflunomide and was inactive/ remission for over 2 yrs! My new rheumy is now hoping to get me back on infliximab which is great. I wish you all the best Cathie and hope your inactive/ remission is long. Love Janet xxxx

  • I am so happy for you Cathie. U have been through a lot and coming out the other end.xxxx

  • Thanks again. Janet, it might be interesting to share experience of inactive disease, I intend to periodically.

  • I'd be very interested in people's experience of inactive disease, I think a lot of us would. Hope springs eternal but real examples make hope so much easier & obviously more justified. x

  • very good news xx

  • I,m so happy for you cathy! Having some joyful tears for you! Xx

  • O dont cry suns shining and we tidied up garden today

  • Excellent news, I am very happy for you xx

  • Thankyou xxx

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