I've joined the ZERO club!!
Posted , 16 users are following.
Hi Everyone!
Just a quick one to let you know it's possible to join the Zero Club - albeit with help of Tocilizumab (Actemra).
I can't tell you how much better I feel off the pred - right down to the last .5mg I still had side effects such as an increased appetite, brain fog, lethargy, etc.
It took nearly a year to get off pred after starting Actemra, but well worth it. Two weeks after my last dose I feel like I have my life back, even though I still have PMR. I'm still a bit stiff, but I have no pain. I have more energy. I eat half what I used to and I am no longer drinking too much because I'm depressed. Pred has a lot to answer for!
I'm injecting Actemra weekly, but the rheumy has mentioned going off it as well early next year - which will be the real test to see if PMR comes screaming back. I've told him I'm not keen to experiment!
2 likes, 52 replies
Bethune FlipDover_Aust
Posted
Michdonn FlipDover_Aust
Posted
Fantastic, congratulations. At what level of Pred did you start with the Actemra. Pred side effects are horrible, but where would we be without it. I am smiling for you and thinking positive that I will join you one day. Thanks for the encouragement. 🙂
FlipDover_Aust Michdonn
Posted
From reading my post last December announcing I'd started on Actemra I was on 10mg pred and 20mg of MTX.
Yes, I'd never have got through the past three years without pred. It certainly is a love/hate relationship!
Michdonn FlipDover_Aust
Posted
Yes, FlipDover I really don't know how I could keep going without Pred, but the side effects, my blood sugar is out of control, which makes the diabetic neuropathy worse. But I am getting down where I hope I can get a handle on the BS. Still thinking positive, with a smile on my face. 🙂
constance.de FlipDover_Aust
Posted
Wow - congratulations, Flip.👍😀😀 One thing now, don't get too enthusiastic and overdo things, you know the drill.
How about weight? Have you managed to get back your shape?
FlipDover_Aust constance.de
Posted
Of course I'm over doing it! lol
yeah, about that weight thing..... Still fat, haven't lost anything, but I'm not ravenous any more and feeling like I can tackle it with some glimmer of success. It's a slow road. I have 40kg to lose to get back where I was.
Even the rheumy was surprised at how much I'd put on - he said he's only had one other patient like me. Must be the genes. I lucked out there! lol
Silver49 FlipDover_Aust
Posted
That's wonderful news, Flip, especially as I remember it was so awful for you and you seemed quite despairing of ever getting better. It makes it especially good to hear your news. Long may you continue to feel so good. Please remember to not overdo everything. It is so easy when we feel so much better. Thank you for the encouraging news.
BettyE FlipDover_Aust
Posted
Congratulations. If you feel good now just wait and see how you feel in a year's time. I went on improving for months. Good luck and don't over do it!
EileenH FlipDover_Aust
Posted
Waaaay!!! That is great!
Is your rheumy going to write you up as an anecdotal report? Would be great to have on file. And it will be interesting to see how reducing the Actemra goes. One lady on another forum has been on it for a long time, GCA I think. She got off Actemra for several months and then had a flare, a few lots of Actemra put her back into remission and she went several months again. If that works that will be quite a "thing".
FlipDover_Aust EileenH
Posted
The last thing I want is a flare and I told him that I'd rather stay on Actemra that risk it. But we'll talk about that next year.
I presume he'll write it up - I started on a trial last year so he'll have to justify it somehow!
Daniel1143 FlipDover_Aust
Posted
You made the observation that while you’re not at zero you still have PMR. I am also at zero after 2 1/2 years and had this very same revelation...that the PMR still with me but I’m able to function without prednisone. I still a concern locations – particularly my neck and my hands. And I just have this visceral sense that my muscularity is off. Muscle fibers just don’t seem to fire the same way or rebuild the same way. Maybe the long term affects of PMR or the world to me facts of prednisone.
I read at one point that there was a side forum for those who have entered the zero club. Does anyone on this thread know about this?
Dan
EileenH Daniel1143
Posted
https://patient.info/forums/discuss/zero-prednisone-discussion-450915
It is listed in the pinned Resources post on the front page of the forum.
Guest EileenH
Posted
the discussion of the zero group is 2 years old. Is this the one you mean?
Thanks!
EileenH Guest
Posted
It was STARTED 2 years ago - but people add to it as time goes on. I think it is probably even older but has been restarted by the Moderator for the purpose - very few people who are off pred stay with the forums, they go off and live their life. If they have posted there, there story is "in perpetuity" so to speak.
BettyE EileenH
Posted
I've a feeling it was started on the NE forum. Our Swedish contributor was the first, wasn't he?. I think it was there when I got to zero four or so years ago. Or am I mis remembering? Anyway, as you say, once at zero part of the raison d'etre disappears for many who are naturally delighted to get back to normal life but know lots of long time strugglers are encouraged to hear good news.
EileenH BettyE
Posted
The "started" dates on this forum vary - it depends a bit on how the revamps were done. I've only been a member for 6 years it says - no I haven't, well over 8 years!
Yes, quite right, it was Ragnar who put up a post when he got to zero because he thought newbies should know there is a light at the end of the tunnel.
FlipDover_Aust Daniel1143
Posted
I'm certainly not the person I was 3 years ago. I was running a lot and doing triathlons. Now I can't walk for any distance at all. I feel 'weak', and unsure. Not quite unsteady, but I'm not my old physically confident self.
I also lack motivation to do stuff that I know will make me work physically, which is also new.
Maybe I just got 'old' over the past 3 years? (I'm only 54!) lol
EileenH FlipDover_Aust
Posted
The motivation thing is strange isn't it? I just look at things and think - can't be bothered even though I KNOW I will feel better afterwards...
Anhaga FlipDover_Aust
Posted
I used the exact same words to someone who managed to get me elected to a board (heritage trust) by leading me to believe I was being asked just to be a member of a committee: I'm not the same person I was three years ago. Yes, I got old. But I'm 16 years older than you, so I really am. 😨
Silver49 EileenH
Posted
Thank goodness I'm not alone. Sometimes it's the energy levels that are the problem and I just think I'll feel worse. Great excuse.
Michdonn FlipDover_Aust
Posted
FlipDover Aust, do not give in. In the spring I could not walk, wheelchair to doctors. I was on the verge of giving in. EileenH and a few others talked me into walking, now back to being very active, 15 tapering to 12.5, looking forward to skiing and working as an instructor. Oh, I am 80 years young. Young LADY, think positive and keep smiling! 🙂