Tapering question/ PMR

[Musiclady18]

Well November 29, 2019 made it down to 4 mg of prednisone and all was okay from November 29 to January 15, 2020 at that point dropped down to 3 mg. (Rheumy had noticed my face was red around sinus area and said to try to drop every 3 weeks). So January 15, 2020 I dropped down to 3mg since that time my stiffness, sore hands, not as much pain as 1 year ago but it has come back so I went back to 4 mg. on January 16, 2020. Some days have been good and some bad, I have been wondering if weather is affecting this PMR. As of today's date January 26, 2020 I am still on 4 mgs. 2 mgs at breakfast and 2 mgs at supper time??? What shall I do??? Continue at 4 mgs or ??? Looking for your reply/ advice???

[SheffieldJane]

What did your doctor advise you to do about the redness around your sinus area? I currently have a sinus infection ( with blockage and head pain) I have been prescribed 2 weeks of Amoxicillin and then to return. I am also at 4 mgs and am not tapering while this is going on. PMR pain does seem to worsen in cold damp weather.

[Musiclady18 in reply to SheffieldJane]

My rheumy felt the redness around my nose, mouth prednisone related and hence she said to try to reduce the mg every 3 weeks instead of every 4 weeks! It did seem to go away, I also used coconut oil a bit, but it did go away, now at 4 mgs it seems to be getting red again???

[SheffieldJane in reply to Musiclady18]

Do you think it’s Rosacea? I have a bit on one cheek?

[Musiclady18 in reply to SheffieldJane]

She thought prednisone???

[SheffieldJane in reply to Musiclady18]

We can get skin things but mine have improved ( Psoriasis) with Pred. It cleared up in my ears after being there for a few years.

[HeronNS]

Just to clarify, you went down by 1 mg one day and back up the next?

It could have been steroid withdrawal if the pain came back immediately. BUT, and this is a big but, as this low level it's a good idea to taper by 1/2 mg at a time and to use a slow method where the lower dose is introduced slowly. How have you been reducing so far?

If the pain had returned gradually over few days that is more of a sign that it's PMR activity, but a drop of 1 mg from 4 to 3 is 25% of your dose and could well have caused steroid withdrawal symptoms. If PMR is still active then you are still working towards finding the lowest possible dose which controls the symptoms. It might be 3, it might be 4, or it might be 2, but at this stage you can only find out by tapering very slowly in the smallest amounts possible. Your doctor's instruction to taper every three weeks is probably only going to cause trouble at this level.

[Musiclady18]

Sorry I was at 3 mgs Nov. to January 15th was okay, over Christmas and New Years and then beginning of January and back to school okay 'til January, then January 16th went back up to 4 mgs been there ever since???

[PMRnewbie2017]

The redness on your face might have made the Dr think of the steroid induced butterfly rash. However I was under the impression this occurred at higher doses along with the moon face. If you Google these you might find some images to help you. HeronNS is spot on with her advice re 1mg drops at this level being too much. On a practical level, have you changed soap,cleanser,moisturiser,hair product,shower gel etc? Often odd skin rashes have a simple explanation.

[SnazzyD]

I’d want them to explain what Pred process is occurring in your face that necessitates hurrying the reduction. To my mind, “it’s the Pred” is not good enough because speeding up the reduction risks flare and not least adrenal crisis. I know some docs do think that these low doses do nothing to protect against PMR/GCA so you may as well hurry off quick before the Pred kills you which goes against evidence.

Just to compare below 5mg I reduced 0.5mg every 12-14 weeks and I still suffered withdrawal aches, fatigue and adrenal insufficiency but it came back slowly but surely. I don’t know what state I’d have been in if it had to be 1mg per 3 weeks!

[Hidden in reply to SnazzyD]

So what my rheumatologist has advised from Feb 20th to reduce 1 mg a month from 10 mg daily would cause me problems. I've only been taking steroid since the 20th December...certainly does seem a bit quick in reading everyone else's comments. I'd have only been taking 10 mg a month for 3 months. Wondering what the Moderators thoughts are. The only thing I hang on to is the fact I was in pain for 5 months before final diagnosis. He prescribed the steroids, took them the same day and pain was gone within a hour, and never returned. Amazing !!

[PMRpro Ambassador in reply to Hidden]

The Mods are also patients - not medical professionals but like several others on the forums we read the book, saw the film and have the t-shirt. Some have healthcare professional backgrounds.

[Hidden in reply to PMRpro]

Oh, I thought you were medically trained. But you seem to know a lot and that's good enough for me. Only thing I would advise anyone seeking to self medicate with their steroid treatment, leave it to the experts and ask them first before increasing or decreasing. They have a profound affect on our bodies and mental state too....hate the damn things !!

[Hidden in reply to Hidden]

But like all drugs they help one thing and mess up another.

[Yellowbluebell in reply to Hidden]

Seeing as a lot of people dont see a rheumatologist and our gp's are sometimes less experienced than us a lot of people adjust their dose themselves quite safely. If you personally want your gp or rheumy to qualify everything you do thats fine but others who have had pmr for years are more than experienced enouugh to decide how their meds need adjusting. YBB

[diana1998 in reply to Yellowbluebell]

I agree with self dosing as long as bloods are normal. No GP or rheumie know our bodies as well as we do. My rheumie dropped me down far too fast the first year (1mg every 3 days!) which induced such a flare in my spine I thought I was going to die. Upped the pred myself in desperation and got relief within half hour. So from 16mg then only dropped only half mg every 4-6 weeks. He said I could self dose. But I am ultra sensitive. Got to 5.5 after 4 years with a few blips en route. This week up to 7.5 due to flare and pain free again. So annoying to be ayoyo pred dieter!!!

[HeronNS in reply to Hidden]

I was given permission by my doctor to manage my own taper. With this disease no doctor can actually manage the fine tuning of anyone's taper. Most of what you read here is people doing just that, managing their taper in a way which works well for them.

One thing which does concern me is the number of people who post asking if they think it's a good idea if they "up" their pred to deal with life issues or non-PMR health issues. My personal feeling is that pred is a very powerful, potentially dangerous drug and other than the minor adjustments we have to make in order to manage the taper and avoid flares we should not be fiddling with the dose without medical advice. If the disease activity is serious enough that the recommended maximum 5 mg increase for a few days to deal with a flare doesn't work, then absolutely you should see a doctor. Possibly something else is going on. If your own doctor is too busy, go to a hospital emergency department.

[PMRpro Ambassador]

What did redness around the sinuse have to do with you dropping faster? Really - either PMR symptoms or blood markers are the only things to guide you. Once you get to 7mg successfully it is time to slow down not speed up your reduction. You are then in the realm of the same amount of corticosteroids as your body requires to function and if you reduce the pred dose then the production of natural steroid in the form of cortisol should increase. However, natural cortisol is not as good an antiinflammatory so you have to find the balance.

The median time to get to 5mg in PMR is just under 18 months. There are a lot of causes of facial redness - including winter weather drying out skin that is already extra-dry because of pred. You need the pred to manage the PMR at the dose you need for as long as you need - so telling you to go in entirely the opposite way you should be is very poor advice.

I would try 5mg for a week to see if that gets you back to the level of pain management you had before and then try 4mg again. If that works, stay at 4mg for a couple of months to get stable again and then try 1/2mg drops, preferably using a slowed taper approach.

Do you NEED a split dose? Why are you splitting 50/50 if you do? It may simply be that you never quite get to a high enough dose in the morning to mop up the inflammation.

[Hidden in reply to PMRpro]

Great you're in the know for helping us all when needed with regards to PMR and steroid treatment Moderator

[tangocharlie in reply to Hidden]

The rheumatologists listen to PMRPro, doubt there is anybody more knowledgeable in the PMR world!

[Musiclady18 in reply to PMRpro]

Well after going with 4 mgs for a few weeks I have gone to up to 5 mgs, a little disappointed, as I was tapering down in hopes of ....................I don't think I need to finish that sentence as a lot of PMR people want to get off the prednisone but I forget that I need to control the inflammation and that is where prednisone should be considered friend! I am wondering and looking back at my notes it seems my pain is highest after my chiropractor appts. does anyone know is the adjustor activating something ????? I will try 5 mgs for a week and see if that helps??? and then begin a slower taper by .5. My rheumy had said she was hoping I'd be off the pred by Feb., but as many say she is not in my shoes.

[Hidden]

You poor thing. The only advice I'd take is the rheumatologists....they're the experts. Can't mess around with steroids !!

Anne

[PMRpro Ambassador in reply to Hidden]

I'm sure you will live to discover that they often don't know much about the practical aspects of pred ...

[tangocharlie in reply to Hidden]

Sadly many rheumatolgists are clueless when it comes to day to day management of PMR, possibly as the majority of cases are dealt with by GPs and they only see the atypical or complex cases sent for referral so go by what's in their textbooks or whatever the standard approach they've always used. Just look at the experiences of many on here. Some of the more enlightened rheumatolgists have learned from this forum and from meeting people at local groups I'm told, but there are many cases of arrogant ones who think they and only they are right and infallible.

[Noosat]

I am tapering, just going to 4 from 4.5. I would not consider a bigger drop than 1/2mg. , which I hope to do after 4-6 weeks, maybe longer.

[kulina]

I felt great at 4 mg too but the pain came back at 3.5 mg. Below 7 mg I've never been able to reduce more than .25 mg at a time. Anything higher than that brings on the pain again.