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

Sorry for the late reply Eileen I have been at work. I should of said in my original message I am between 8 and 9mg using the dead slow method of reduction. 

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. 

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! 

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

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.

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.

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. ☺️

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.

 

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.☺️

I think that is a fair plan - but you may need a few days at a dose to get a really good effect. But you do need to get the pain under control.

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.