Reducing steroids to fast?

[Anitao2]

Hi everyone just wanted your thoughts on my situation My rheumatology doctor is reducing my pred by 2.5mg every 2 weeks in order to get me off them in a year Was only diagnosed in July and to be honest it's not going well my legs and knees quite painfull and am exhausted most of the time As anyone any advice on this? I realy need to get back to work asap but don't feel well enough : (.

[PMRCanada]

Sorry to hear of your rapid taper as directed by your Rheumy. What is your current dosage? Many on this site will recommend only a 10% drop in your pred each time you lower the dose. Others here can provide some suggested tapers that are slow, yet effective, as this method is better for avoiding flares.

I am fairly new to this whole PMR thing, diagnosed May1 and started pred at 20mgs. Flared going down from 15 to 12.5 following my rheumy’s instructions. This time around I went slower reducing 15 down to 13.75, down to 12.5 and now alternating 12.5/11.25 daily for a week or two. Then I will take 11.25 daily for 10-14 days, and so on.

Stick with us, collectively a wealth of experience and knowledge about PMR/GCA (others more than me), all willing to share and support one another. I have found this forum to be very helpful as I navigate these new waters and go through the various stages of this condition. These folks are very inspirational and have a wonderful sense of humour. I’m in Canada and as of yet have not found any support group meetings, but in the UK there seems to be plenty.

Wishing you all the best moving forward. You are not alone, we are here with you.

[Anitao2 in reply to PMRCanada]

Hi thank you for the advice I am on 15mg at the moment and reducing 2 .5 every 2 weeks so it does seem rather fast compared to you Hope all goes well for you Think I may need to check this all out with my GP will keep you posted

[Pym1 in reply to Anitao2]

My experience would suggest halving the reduction and doubling the time! Hope you can sort it out.

[Suffererc in reply to PMRCanada]

I am tapering the same as you. Found the 2.5 too much. Dr doesn't know yet am also using the DSNSmethod.

[Primarose]

Hi Anitao2 PRMPro or Dorset Lady will be able to help you with this. It doesn't sound right to me. How can anyone predict how long your illness will last.

[Primarose in reply to Primarose]

Error, should have said PMRPro!

[Anitao2 in reply to Primarose]

Thank you will see what I can find out

[PMRpro Ambassador]

"My rheumatology doctor is reducing my pred by 2.5mg every 2 weeks in order to get me off them in a year" ... anyone any advice?

My advice? Find yourself a doctor who bothers to read up-to-date info about the disorders he is diagnosing and managing. I'm sorry but PMR does not last under a year - there may be a very small number of patients who present with apparent PMR and are off pred in under a year. It probably wasn't the PMR we talk about.

practicalpainmanagement.com...

is about new work from a group of the top experts in the field, some of them at the Mayo.

Less than 1 in 5 patients get off pred in under TWO years, 1 year is very very unusual. And those who get off pred quickly tend to be at a higher risk for a relapse later. Most people I have known are off pred in something like 4 or 5 years - but the median duration of pred is 5.9 years.

What dose did he start you at? To aim for a year at 5mg per month it must have been a highish dose. Is your diagnosis PMR or GCA? Pred doesn't cure anything - it MANAGES the inflammation created in the body each day to allow a decent-ish quality of life in the meantime until the actual illness that causes the symptoms we cal PMR, an autoimmune disorder, burns out and goes into remission. Sorry - I know you don't want to hear this.

If it is PMR then a much more usual approach would have been 20mg to start and stay at that for at least a month or until the blood markers (if applicable) and symptoms have reduced markedly and you achieve a stable level of freedom from pain/stiffness which is more than 75% improvement on how you were pre-pred. Then you reduce SLOWLY - 2.5mg per month to 15mg and then probably slower from there. No reduction should be more than 10% of the current dose - you aren't racing to zero, you are looking for the lowest dose that gives the same result as you managed with the starting dose. That will be higher early in the illness than it will be later - it does tend to fade away over time, and the aim is to get to about 5mg if you are lucky but that often simply doesn't happen for a long time.

Where are you? And what is your job? That makes a great difference to whether you will get back to work easily or soon.

[Anitao2 in reply to PMRpro]

Hi that's for the advice I am a physical therapist and work with adults with brain injury tge job usually means lots of massage and passive streaches for my clients my rheumatology clinic is the haywoodifference in Stoke on trent and they do have a very good reputation as a rule so maybe have just been unlucky I started on 25mg and only have PMR but going down fast now 12.5 and as yet not reached a stage when I am pain free fingers crossed that will come in time

[Anitao2 in reply to Anitao2]

Sorry that should say thanks for the advice PMR in my fingers now lol!

[PMRpro Ambassador in reply to Anitao2]

"as yet not reached a stage when I am pain free"

Then you weren't on 25mg long enough - I am assuming the PMR dx is correct - and whatever you should be doing you shouldn't be reducing hell for leather. Without more details - date of starting pred, response on your part, and rate of reduction (how long between drops) it is difficult to comment. But I can assure you one thing: if you aren't at a low level of pain now, you won't achieve it at a lower dose. Someone hasn't a clue about PMR - however good they may be with other disorders.

You needed the starting dose for a month and then drop to 20mg for maybe a month - so if you were doing that, you would still just be at 20mgand considering dropping to 17.5mg. If you had done that - you might be in a far better state.

This isn't just according to patients who've consulted Dr Google - this is internationally renowned PMR expert stuff:

rheumatology.org/Portals/0/...

rcpe.ac.uk/sites/default/fi... (bit fast but will work better than what you have been told to do.

[GerriMc]

That guy (I’m assuming it’s a guy) needs a smack. What is the point of him putting you on steroids if he doesn’t let them do their work? Sorry, the other more experienced here will explain why but this doctor and ones like him make my blood boil. 😡

Really hope you get the care you need soon!💕

[Anitao2 in reply to GerriMc]

Ahh thank you good to know I am not going mad !! Did wonder why I felt as though am making no.progress

[piglette]

I am totally flummoxed by your rheumatologist’s thinking. He gives you a product to reduce your pain and then suggests you cut down on it at a rate of knots so you can get off it. Why does he think he gave you the pred in the first place if he then intends to take it away from you? What is frightening is that he calls himself a rheumatologist but does not seem to know about PMR and how to treat it with steroids.

[Chrob]

This is why I’m not bothering with a rheumatologist. I think 75% seem to just pull stuff out from a hat .

[karools16 in reply to Chrob]

In 13 years of GCA, never saw a Rheumy...treated by marvellous Neuro, who, at 3mg Pred, handed me over to my GP.

[DorsetLady PMRGCAuk volunteer]

Yes you are reducing too fast.

PMRpro has given you good advice - the only thing I would say is get yourself a Rheumy who actually knows something about PMR and it’s treatment! And is up to date with current thinking.

Work will be difficult, but it will be a darn sight easier if your PMR is under control - current regime of tapering will make virtually impossible.

[Hidden]

My Rheumy told me to reduce by 5mg every month and it was too much , so to get to the same point He waNted me to I did it slower.

I too was tired and had pain, but once my body adjusted it slowly got a bit better. I think the withdrawal from the Pred is almost as bad as the PMR/GCA symptoms

[PMRpro Ambassador in reply to Hidden]

There is no need for withdrawal, or just minimal effects if you reduce the way we bang on about on the forums. We've all been there - and are here to report our findings to save others suffering it too!!!

It doesn't apply for GCA starting doses but in PMR reducing at more than 1mg per month is predictive of flares. That was said by top experts in PMR.

[Oldman-1]

Hi Anitao, Yes, a good quality Rheumy will only plan you to drop 1mg per month. There are known issues with dropping too quickly which effects blood pressure. If you`re unsure ask for a 2nd opinion.

[painteratheart]

In my opinion, WAY TOO FAST...I was diagnosed in late February and started on 15 mg. That took care of immediate inflammation; stayed on that for 2 months before slowly reducing to 12 and half, which my body tolerated quite well. Am presently on 10 and half, and that is going fine, but have been reducing by half mg at a time. Luckily, my doctor said to listen to my body and not to reduce more than 1 mg a month. Said they don't worry so much about long-term effects of pred when we reach 7.5, but goal is 5 mg. She has patients who have been on from 2 to 5 mg for 2 yrs or more. Average length of PMR is from 6 mo to 3 yrs. I realize from reading this blog that I am one of the lucky ones in that my doctor pinpointed the problem early. Each case and each person is different, but don't despair! Trust your body and your judgment. Whole goal is to avoid flares but we have to be patient and as comfortable as possible, even if it takes longer. Please keep us informed and good luck!!

[PMRpro Ambassador in reply to painteratheart]

The average duration of pred treatment or PMR is 5.9 years - a recent study established that, The PMR itself is probably a bit less, but not much. But that will vary from under 2 years (less than 20%) to life - so the standard deviation is fairly high.

[painteratheart in reply to PMRpro]

I stand corrected. Will proceed with good advice from all going through this weird condition

[PMRpro Ambassador in reply to painteratheart]

Your suggestion was more realistic than some doctors manage!!!!