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Starting Humira for AS and told to taper steroids quickly....really?!

I am on a 3 month trial of Humira for AS and have been told that after 2 weeks I should start reducing my steroids by 1mg a week. I am worried on two counts. One the effect of Humira on my immune system but feel I have to try it at least but second is the recommended reduction too quick? I know the point of going onto Humira is to get me off the steriods which they are worried about for my Osteoporosis but surely after nearly 2.5 years this is too quick? I have enough steroids to do what I want so would like to know what you think. Eileen your advice would be very much appreciated. 

13 Replies

  • EileenH elizabeth40672

    What dose are you on at present?

    • EileenH elizabeth40672

      In that case - yes I totally agree that 1mg per week is FAR too fast after more than 2 years on pred. Now the limiting factor is your adrenal function returning successfully and I really doubt that it will return that fast. It might, of course, never say never. You should be fairly OK for the first couple of mg, but beyond that I think it is playing with fire. 

    • elizabeth40672 EileenH

      So you think I should stick with slow reduction and I agree. I've been told to book an appointment to see rheumy in 3 months time. If I continue with slow reduction I will be getting closer to 5mg anyway. I wont change my pattern but if what they are saying is right I should be able to get really low or even off pred if it is AS and not PMR. As they are still not 100% sure I would be daft to reduce pred fast and upset things at this stage. Thanks for your advice as always Eileen very useful! 

    • EileenH elizabeth40672

      That really is my opinion - I do hope you can persuade them to let you keep going at your pace. I can't remember what my friend whose PMR was overturned in favour of AS did - I think the reduction to 7mg was speedy and then she slowed down. Good luck

    • sharon35553 EileenH

      HI Eileen,

      sorry to be such a pest. Had all blood work done yesterday and this morning started 5 mil of pred, after three hours groin and leg pains were gone, left shoulder pain gone but oddly my right side of neck and shoulder still very achy.

      cant see Dr unti July 6.

      my question is should I stay at the 5 another day or up it to maybe 7 or more tomorrow. And see if it works any better.

      I had done the dead slow taper when I ended the pred two months and I remember having stayed at the 5 mil for about six weeks and felt good but now not sure zig I need a jolt of a higher dose to start again and then work my way down.

    • Anhaga sharon35553

      You might want to give it another day or so because if 5 mg works you will already be at a level which will cause the fewest side effects, and will make your doctor happy.  But if you wake up tomorrow morning feeling not much better than you did before you took the 5 mg, then I suppose it would be wise to try more.  Hopefully Eileen will see this post in time for you to get her advice before morning.

    • Michdonn sharon35553

      Sharon, here a new concept, listen to your body, if you wake up ready to run a marathon, PMR pain free you have the PMR under control with the Pred. If you still feel like crap, you need more. If you still have a little pain and discomfort, try another day.

      Do not reduce if you have pain and let the inflammation get ahead of you.

      Good luck think positive and try to smile, I know it sounds crazy, but I think it helps. ☺️

    • sharon35553 Michdonn

      Thank you Michdonn,

      Im done shedding tears through the pain, I'm doing exactly as you said. When I wake tomorrow I'll see how I feel and then decided what to do, if needed I'll up the dose to7 mil and see how that goes.

      I don't there's there's harm to doing it this way and hopefully Ill see an improvement.

      Thank you again for your kind words.

       

    • Michdonn sharon35553

      You are welcome Sharon, we have to help each other. If our doctors had to live through PMR pain I know things would be different. The race to be off Pred would be over. Or if they just read the latest article and reports, we all would be much better off. Thank God for the forum. Think positive and try to smile.☺️

  • sharon35553 elizabeth40672

    HI Elizabeth, I too have the worse case of Osteoporosis, had total hysterectomy at 39.

    have been on prednisone for three years and finally tapered to zero on April 2 and now going back to a low maintenance dose,lies it is not good for the bones but in my case life is nothing but days of agony.

    Im sure Eileen with have great advice for you.

    Good luck.

    Sharyn

    • elizabeth40672 sharon35553

      Hi Sharon, thanks for replying. It is definitely trying to find the balance that is important. You need to live your life and if that means a little steroid then that is what you have to do. I hope you find that you can taper again soon. 

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