Rapid Taper

[3dogsheidi]

My Rheumatologist wanted me to taper in 6 days from 20mg to 0 prednisone in order to reassess me for PMR. Even though I did have elevated CRP and ESR he is not quite sure since some of my symptoms weren’t gone. Will all my so called PMR symptoms return by the time I’m at O and will my markers be back up? I’m at 5 today and have bilateral hip, groin pain as well as lower sacrum and upper thigh pain, some burning on outer thighs. No pain in upper body. I do have spinal stenosis.

[piglette]

How long were you at 20mg?

[3dogsheidi in reply to piglette]

I was on 20 mg nine weeks.

[piglette in reply to 3dogsheidi]

As the others say, dropping so fast is not a good idea and your doctor should be aware of that. It is not like you have asthma and have a high dose for a very short time. Be very careful and any problems STOP reducing and tell your doctor.

[Sandradsn]

6 days! It seems very rapid and not really tapering.

[DorsetLady PMRGCAuk volunteer]

As you’ve been on Pred for at least a couple of months…..that’s a very quick taper! ..and yes you are likely to get a return of PMR symptoms [if that is what you have, and what your doctor is trying to establish] , and maybe some adrenal insufficiency issues … has you doctor given you any advice should that happen?

So it’s not going to be pleasant…..

[3dogsheidi in reply to DorsetLady]

No, they just said I could call the office after hours if need be.

[DorsetLady PMRGCAuk volunteer in reply to 3dogsheidi]

Hopefully you won’t need to …

[PMRpro Ambassador in reply to 3dogsheidi]

You should be absolutely fine - but uncomfortable - down to 5mg. below that I would go a bit slower and keep 10mg on you in case you start to feel really unwell.You could be really unwell and not able to get hold of them, during or after hours. Just be aware and if you feel ill - take the 10mg.

[3dogsheidi in reply to PMRpro]

This sounds like a good idea to keep prednisone on me. What is unwell? I have felt unwell for the last 6 months since this all started. I’m one to push through. I read symptoms of adrenal insufficiency, I have those a lot of the time anyway. Could the symptoms happen weeks of months after coming off steroids, although I’m thinking Dr. Is going to have me go back on them when I see him.

[PMRpro Ambassador in reply to 3dogsheidi]

It takes up to a year for adrenal function to settle down after stopping pred - and that is assuming it is present which you wouldn't know if you haven't been tested.

I'm thinking of impending adrenal crisis rather than insufficiency:

uclahealth.org/medical-serv...

Confusion is an early sign and can get so bad you aren't in a state to seek help. Hence my warning.

[posthinking01]

Hi sorry to hear you are going through this - yes it is important to know how long you have been on this dose of 20 mg as your adrenal glands may have gone to sleep and a very slow taper would only be acceptable not a rapid descent as you are being asked to do. If you could let us know - I have adrenal gland insufficiency so knowing how they work is very familiar with me - I wish it wasn't

[posthinking01]

Hi just seen that you have been on 20 mg for several months - it would not be advisable to taper down rapidly and your rheumy should be made aware of the consequences - I have adrenal insufficiency - Addison's - and you would need to come down very very slowly so you don't have a reaction.

[Viveka]

You can still get symptoms on pred. From what I understand from the Forum at least 70 per cent of symptoms should be improved. But they should not be getting worse between tapers if the pred level is right.

I don't know at what stage after stopping pred pmr would result in increase in blood markers or whether this would happen. Some people don't get raised CRP and ESR or they get them at the start and then not after.

Do pain killers help the pain? They don't usually with pmr. (There are some you shouldn't take with pred, sorry can't remember which, I think it's the ones that are hard on the stomach.)

Hope you're able to take things really easy and you can contact the rheumy if needed.

[cranberryt]

If you have been on prednisone more than a couple weeks, it is extremely dangerous to come off it so quickly. It can take a while for bloodwork to catch up to changes, both increases and decreases. It sounds like your symptoms have already returned and yes, if you have active PMR, stopping prednisone (or even lowering the dose too far) means your symptoms will return, though often the symptoms can move around to different areas of the body. The point of a taper is to find the lowest possible dose that controls the disease symptoms until it burns out. While literature says 1-3 years, it’s very often 4 years or more. I would say there is no point in continuing to taper if your symptoms are already back and can be evaluated.

[3dogsheidi in reply to cranberryt]

I think I will call the office and discuss this with them.

[3dogsheidi]

I woke up this morning, after a hard night. I forgot how this affected my ability to roll over. That was completely gone on prednisone. I am so stiff, worse than I was nine weeks ago pre prednisone. I could barely get up the stairs without deep breathing. Pain goes down both legs and back.

I’m at my last dose of 5 mg before dropping to zero. See Rheumatology on Friday. I am a bit concerned about having a reaction to no prednisone in my body, with my adrenals. I feel fine now. They didn’t mention any side affects. Can it happen later of is there more information on this?

Last question. If it is spinal stenosis and coming from my back, would the prednisone have stopped the pain?

[DorsetLady PMRGCAuk volunteer in reply to 3dogsheidi]

Re steroids and spinal stenosis-see this -

verywellhealth.com/reducing....

..and this link gives more info on adrenals -

healthunlocked.com/pmrgcauk...

You may not have a problem, but you need to be aware of the signs of adrenal insufficiency..

.. and yes do discuss with the Rheumy..

[BarbB]

When you taper off 20mg that quickly not only will you likely experience a flare up of PMR symptoms, you will experience cortisol withdrawal symptoms. Pred at that level for 9 weeks has suppressed your adrenal gland production of cortisol, which is why a slower taper than that is necessary to allow your adrenals to ‘wake up’ and start functioning again.

Withdrawal symptoms can include headache, lightheadedness, fatigue, abdominal pain and digestive problems, as well as flare ups of arthritis and other inflammatory conditions. It will be difficult for the doctor to differentiate between cortisol withdrawals and other pre-existing non-PMR conditions.