Tapering.

[mgrogers99]

Tapering prednisone and doing pretty well. I know about lowering in small increments but am stuck with what the doctor says...it's worked okay so far. Today I had a sed rate that's the 2nd highest in 2.5 years of PMR so tapering has stopped for now. This is my 4th attempt. To top off my day I took a bad fall walking into my house. I don't need tapering advice but would like to know if someone in this forum sort of gave up on tapering...not forever, just a break from trying. It is so discouraging. I want to concentrate on a rehab program I start next week for Longhauler's COVID....walking without falling might be more important than PMR right now. I hope I am making sense!

[SnazzyD]

Lots of us have taken a break, I did a few times. Sometimes it felt that the body just couldn’t deal with it and it’s one issue at a time. Increasing sed rate may not be the PMR as it is not specific and may reflect inflammation of a different kind. How is the the Long Covid taking you? I had that for a good 7 months and possibly a bit longer but didn’t get rehab as I was one of the early ones. There are a few other Covid people on here too. What dose are you on?

[mgrogers99 in reply to SnazzyD]

I was on 15mg then to alternate 12.5/15 starting thus past Sunday. My long Covid symptoms are several but walking, endurance, fatigue, and breathing difficulty are the worst.

[mgrogers99]

Thanks. The steroids definitely help me but I am eager to get off. I feel a break might be best.

[SnazzyD]

Although it is a recommended drop, in reality for many a drop of 2.5mg at this level would be too much in terms of withdrawal and certainly I would have not coped with alternating the dose; far too much change. On paper it looks like it should help the body by not plummeting to the new dose 100% in one go. However, for those who are sensitive to Pred drops, it can feel more like a rollercoaster than gentle ride. I know some docs like to do that to try to nudge the adrenal glands into action but at this level their function will be non existent because you have so much Cortisone on board. It’s really for doses well under 10mg when adrenal function is expected to improve. I smoothed out the ride by drops of 0.5mg and at this level it was every week or two but got longer as I went down and according to how my body felt.

[mgrogers99 in reply to SnazzyD]

I tolerated alternating previously and it is the way she wants me to do it. I have changed doctors once and don't want to do it again although I am tempted. I don't have a lot to chose from in my medical group. I asked her the plan when I am at 10mg but she didn't give me an answer because I am "not there yet"...ugh!!!

[SnazzyD in reply to mgrogers99]

Often it gets harder as the dose drops so the steps need to get smaller, however we’re all different and you are also listening to your doc. It’s so tricky. I hope you can get your ‘holiday’ and feel a bit more stabilised to contemplate the rest of the journey.

[cycli in reply to mgrogers99]

from everything I am reading it is the same story. We are all different. We react slightly differently. We have similar reactions to different levels. How can a Dr or Rheumy. understand and proscribe let alone prescribe a schedule that will work individually for each of us? I now know that I will reduce as I see fit and they can supply the necessary qty accordingly.

[mgrogers99 in reply to cycli]

I can't count on getting the meds I need unless the doctor agrees!!

[cycli in reply to mgrogers99]

what a system mgrogers99. you have to really advocate for your state and condition then because they clearly have no concept and are not the ones experiencing the consequences of their intransigence. best of luck and stay strong.

[mgrogers99 in reply to cycli]

It's the specialists not the system here. I'm a retired RN with over 40 years experience and pretty much know how to play the game with my medical group....and what things to drop and not push with them!!

[cycli in reply to mgrogers99]

sorry to upset and offend. Nothing in your profile to give me a lead . glad you have so much experience therefore I'm sure you will sort your issues out with them. The specialists ARE the system They set the rules as it doesn't set itself.

[mgrogers99 in reply to cycli]

I'm not upset and you didn't offend me.l..no problem! I've got the best primary doctor who listens and if she could treat me, I'd be less frustrated but I don't have a choice with the system I'm in....I could change systems but financially that is not a good choice for me. I've had excellent care for decades except for the two rheumatologists I've had with PMR.

[cycli in reply to mgrogers99]

thank you for that. It's always difficult to interpret reactions on forums and sometimes people misunderstand. It would help enormously however if everyone filled in their profiles with some significant details so that the more knowledgeable sufferers can offer focused advice and experiences

[Boss302Fan in reply to mgrogers99]

Pick a DSNS method and tapering that works for you. If you’re not at the Doctor’s prescribed dose at the next appt. or you need a prescription refill before, tell the doctor you had flares. Can’t expect you to taper in a flare.🤷🏼‍♂️😂

If the doctor wants to be stupid there is a way around it. My doc now just asks me what dosage I’m on, how am I feeling and do I need any refills.😂😂😂😁

[mgrogers99 in reply to Boss302Fan]

She is a difficult person to figure out. I don't see her for 2 months now and she wants me to stay on 15 mg which is fine....I'd like to be on 5 mg!! I'm thinking I might try tapering in a couple of weeks....and not tell her but she might fire me as a patient!

[Boss302Fan in reply to mgrogers99]

I wouldn’t rush it. Recommend 10% reduction over a 5-7 week period and only if not experiencing any symptoms of PMR.

[mgrogers99 in reply to Boss302Fan]

Oh I won't rush it that's for sure!!! I've taken 20 mg for the past two days because of my pain and it is effective and works well.....but I'll return to 15 in a few days. I'll review the Ragnar method for tapering.

[PMRpro Ambassador in reply to mgrogers99]

There is no "Ragnar method" - Ragnar was the person who first introduced the concept of spreading a drop over several days. On the forum you will find the DSNS (Dead slow, Nearly stop) and the DL (DorsetLady) versions - it is a case of which suits you better.

[mgrogers99 in reply to PMRpro]

Thanks.

[PMRpro Ambassador in reply to mgrogers99]

You cannot taper until things are properly under control - rush it and you will just nd going backwards. Usually pretty quickly!

[cycli in reply to Boss302Fan]

my Dr. has always started her conversation with how am I and what dose am i taking now. I am fortunate.

[piglette]

Around 15% of people who have classic cases of PMR in fact do not have PMR at all. Be careful suggesting people stop taking steroids, even if it worked for you.

[mgrogers99 in reply to piglette]

Sorry...realized it wasn't me you were addressing. I thought I was losing my marbles!!

[PMRpro Ambassador]

If the pred never helped at all - it wasn't PMR they were dealing with. Pred is NOT "awful stuff" for many of us - it is a life saver for many patients with various disorders but here at the very least it is protecting people's vision.

[mgrogers99 in reply to PMRpro]

Agreed! Also steroids help with breathing disorders.....the idea of saving vision and helping someone breath are so important!

[PMRpro Ambassador]

You are NEVER reducing relentlessly to zero - you are tapering the dose looking for the lowest effective dose - the lowest dose that gives the same result as the starting dose did. Lower than that will leave a small amount of unmanaged inflammation which will, over time, build up until there is enough in the body to cause symptoms again.

If the sed rate is rising - that is happening and you need MORE, enough to keep the sed rate, at worst, steady. If it is rising, it is out of control. And as that happens you are likely to find the symptoms you are blaming on Long Covid may not be Long Covid at all but PMR. Many of us have similar symptoms - but it certainly isn't due to Long Covid!

[mgrogers99 in reply to PMRpro]

During the night and this morning my pain was the worst it has been for a while. I told the doctor I don't want to try tapering again very soon...maybe next year!

I don't think my Long COVID symptoms are PMR related. Wasn't it you who said not everything is PMR???!!!! The involvement of my legs might overlap.... My neuro and respiratory symptoms only started in December when I got COVID.

[PMRpro Ambassador in reply to mgrogers99]

Oh yes, not everything is PMR - but by the same token, some things are PMR that you wouldn't think are ...

[mgrogers99 in reply to PMRpro]

Yes, I agree. I didn't give myself the diagnosis of Long COVID though!! I haven't breathed normally since December and that's the worst symptom. The fatigue of PMR and COVID feel different.

[PMRpro Ambassador in reply to mgrogers99]

I can imagine that - but not being able to breathe is horrible

[mgrogers99 in reply to PMRpro]

I remember thinking I might die....someone I know died of COVID six months before I got it....she was only 44. It was very frightening. I made the decision to refuse any vent and to let me go.....talk about 'being real'!

[cycli in reply to mgrogers99]

while everything may not be PMR that doesn't mean it isn't. If it waddles, swims, and quacks like a duck it's safest to assume it is a duck.

[PMRpro Ambassador in reply to cycli]

Unless it's zebras ...

[cycli in reply to PMRpro]

do they lay eggs as well?

[PMRpro Ambassador in reply to cycli]

Don't be silly!

[cycli in reply to PMRpro]

it's that time of night. enjoying preds latest surprise. Just developed swollen knees, calves and ankles with fluid and skin very tender and red. Happy days. Off to elevate and read a book . Farley Mowatt never cry wolf. 4 pages in and tears of laughter. poor granny. Highly recommend.

[PMRpro Ambassador in reply to cycli]

Don't ignore it if it is red and tender ... Keep an eye on it

[cycli in reply to PMRpro]

what do I do with it then. Certainly not massage. It's the lymph not coping. Reminds me of when I had cellulitis at 23 but there's no fever or shakes. Interesting, pulse up to 104 and not normal 68. Fingers wanting to cramp . Happy days. Think it's an early night.

[PMRpro Ambassador in reply to cycli]

That sounds like a warning to me - how is it this morning? Are you keeping your magnesium level up? That will cause cramps, worse when on pred.

There is a form of massage called manual lymph drainage - brilliant!!

[cycli in reply to PMRpro]

morning PMRpro. that's freaky. we posted almost simultaneously. I'll look into it, thanks. My sister does this as a masseur, I'll ask her but she's 200 miles away and shielding.

[cycli in reply to PMRpro]

Morning all. Legs seem ok. tenderness, swelling and redness all reduced overnight, still some fluid and may build again during day. good nights sleep till 7am. first time in a long while. sun shining, no rain or wind, taking dog for a walk. a good day. correction, 2 hrs. later fluid still an issue, increased pulse and shortness of breath. System probably trying to clear, think I'll look for a lymph masseur PMRpro and see if that helps. Another little puzzle to amuse me.

[mgrogers99 in reply to cycli]

“When you hear hoof beats in the hallway, think horses, not zebras".

[cycli in reply to mgrogers99]

shod or natural?

[mgrogers99]

Thanks.....been on Actemra and it didn't help me....6 months and nothing but 2-3 days a months of feeling miserable! The $55,000 per vial/month (insurance paid) nearly gave me a cardiac arrest!

[mgrogers99]

I was happy about trying Actemra. Maybe the literature is wrong about taking 6 months to test. I think PMR is often not the correct diagnosis and I asked my primary doctor to run certain tests that would rule out other disorders. My primary doctor is a gem and she said 'sure' and it was done......all came back negative. My mother had awful rheumatoid arthritis so I've been tested for it for years....always negative. Yes, prednisone works.....2-3 days after starting on it was like a miracle.

I'm on methotrexate also and asked my rheumatologist yesterday if I can go off it since it apparently isn't doing what it is supposed to. She gave me the most indirect answer it was humorous. She didn't say yes or no but wrote that I could possibly lower the dose but changing things while other changes are being isn't always a good thing. Huh I thought....what other changes.....but I bit my tongue. I'm trying to play nice!

[mgrogers99]

Thanks!

[mgrogers99]

She isn't thinking of another diagnosis and thinks it is PMR.....the methotrexate is being used as a steroid sparer. ......but I think I'm going off it soon.