Update: Arrived at 4.5 mg & staying for awhile!

[LucilleG]

I started taking 40 mg of Prednisone in late May 2021, so I've been taking Prednisone for 23 months so far. I started having symptoms in early January 2021. I feel lucky to be at this stage after 2 years, although, like many on here, I was told by a GP that it would go into remission in one year!

Up until now (except for when my rheumatologist had me decreasing so quickly in late 2021, early 2022), I haven't had any of the original symptoms returning for very long while reducing. My indication that something might be up is when I get niggles in my neck - it is a different feeling from sleeping incorrectly. Usually, the niggles have been due to steroid withdrawal.

Since finishing the taper from 5 to 4.5 mg, I'm starting to wake up with neck niggles every morning and they are stronger than usual. They start to go away about 30-60 min after I take my prednisone. When I woke up at 5 am this morning, I not only had the neck sensations, I also had a return of the sound of my heart beating in my head. Both of those sensations were my first PMR symptoms. Now thinking back over this last taper, I did have some moments when I could really hear my heartbeat when I was out walking, but put it down to walking too quickly. Once I took 4.5 mg, they both dissipated within the hour. I have not had this pulsating of my heartbeat since January 2021 - it went away and I then started getting the pains in the rest of my body (shoulders, groin, hips, upper arms).

So I will be staying at 4.5 mg for at least 4 weeks. In terms of finding the lowest dose that gives me the same relief as the initial dose did, I think I am slightly below that. However the symptoms do go away once I take the prednisone. I guess if they start to increase, I will need to return to 5 mg. However, I'm going to stay at 4.5 mg for the time being to try to get my adrenal glands to start producing cortisol once again.

I guess my question is, should I stay put at 4.5 mg for now? Or increase back to 5 mg?

On another note, I get my 6th covid booster this afternoon. I have taken an extra strength Tylenol at 6 am and will take another at noon. I hope that the only side effect is a sore arm!

[PMRpro Ambassador]

Up to you - sounds as if you are absolutely on the borderline so I wouldn't be aiming to reduce any further and I htink you need to be very aware of any increase in the symptoms.

[LucilleG in reply to PMRpro]

Good morning PMRpro (actually, good afternoon for you!) I just took my morning dose of Prednisone half an hour ago - I decided to up it to 4.75 mg yesterday. This morning, I woke up with a neck niggle, but don't have the beating of my heart in my head. However, I'm thinking I do need to return to 5 mg. Is it enough to go back to 5 mg (I can take an additional 0.25 mg this morning) or should I go up higher for a few days to mop up any inflammation?

(I had my covid booster yesterday, and only have a sore arm so far, after ~18 hours.)

Thank you to you and DorsetLady, as well as SnazzyD, BCol, and Raewynne for responding to my question!

[DorsetLady PMRGCAuk volunteer in reply to LucilleG]

I always take paracetamol (Tylenol to you probably) day for a few days around a vaccine (any vaccine, whether on Pred or not)… so maybe try that -your neck niggle may be related to that rather than PMR….

Worth trying before you up Pred.

But as already said you might be on the cusp of being enough/not being enough Pred.

[LucilleG in reply to DorsetLady]

I did take two doses of extra-strength Tylenol before the vaccine and then 2 doses after...so far, just a sore arm - no flu-like symptoms at all. I did take another Tylenol an hour after the prednisone this morning. Like the past few weeks, after I take my dose of Prednisone, the neck niggle goes away within an hour. I think 4.75 mg is working for me so far. I will see how things go tomorrow when I take that dose again. The PMR symptoms definitely have lessened in the last 2 days since increasing from 4.5 to 4.75 mg. I will monitor things closely.

[DorsetLady PMRGCAuk volunteer in reply to LucilleG]

ok -good

[PMRpro Ambassador in reply to LucilleG]

If it is working, that's fine I;d say. Though isn't 4.75 an awful fiddle?

[LucilleG in reply to PMRpro]

I thought it would be, cutting that tiny 1 mg pill into 4 pieces, but it wasn't that bad!

[DorsetLady PMRGCAuk volunteer]

Ditto to PMRpro’s comments

[SnazzyD]

If it were me I’d go to 5mg. If on 4.5mg the symptoms are in the shadows until the Pred starts to get into the system each day, I’d want a bit more than that. As with all these things you need to do what feels right to you.

[LucilleG in reply to SnazzyD]

Yes, I think you are right. And in terms of the adrenal glands, being back at 5 mg probably won’t make too much of a difference - they still have to wake up at that low level of prednisone, even if they aren’t doing too much yet!

[LucilleG in reply to SnazzyD]

I decided to take an additional 0.25 mg this morning, so I think I’ll try 4.75 mg over the next week and see if that is enough to keep the symptoms at bay. If not, I’ll go back up to 5 mg.

[Bcol]

I agree with SnazzyD and personnaly I would go back to 5.0mg where you were happy. If you feel 4.5mg is just below what you need then the inflammation is likely to build up and you might need to go even higher to keep it under control. I hope whatever you decide works out well.

[Raewynne]

I had a lot of issues when I reduced to 4.5.Tried it a couple of times.I went back to 5 and I'm better there.Since I ve had a lot of stress an illness over the last few months I have stayed on 5mg.At one stage when I was quite sick the Dr himself put it up to 10mg for a week.Im in no hurry decrease.Not when I am recovering from other nasty things.It will happen in time.

[LucilleG in reply to Raewynne]

Thank you for this. Once I start to taper again (won't be for a month at the earliest), I think I'll decrease by 0.25 mg. I did a good job of cutting the 1 mg pill into 4 pieces!

[sidra1968]

May I ask how and why you started on 40 mg? I am currently on 30 mg and after 3 great days, my neck has started up again. Leaving on my cruise in 2 days, might bump it to 35 mg. I have always been what they called a "high metabolizer", meaning I always needed more of whatever med I am given..they just don' affect me as much as other people. I never get side effects, etc. Thank you.

[LucilleG in reply to sidra1968]

I think the GP decided to start me at 40 mg because when I first started getting symptoms 5 months before a diagnosis, one of the symptoms was a pounding in my head, in sync with my heartbeat. They probably thought I might have GCA. I was at 40 mg for 2 weeks, then 30 mg for 1 week, 25 mg for 1 week, 20 for 2 weeks, 15 for 2 weeks, and 10 mg for 2 weeks. I then was told to go down to 7.5 mg and this was when I finally started to feel the PMR symptoms again...looking back, I can see the taper was too quick. I probably didn't need to be at such a high dose to start.

[sidra1968 in reply to LucilleG]

Thanks..I did see one guy (different site), that needed 35 mg to get it down to where he knew it was really working. I think I may be like him. He was "younger" like me. I wonder if that makes a difference? Maybe faster metabolisms at that age somewhat still..than say someone who is 73? Who knows, right?

[LucilleG in reply to sidra1968]

Yup, hard to say. I was "younger" when I was diagnosed, at 56.

[sidra1968 in reply to LucilleG]

Interesting. I was 53 when it started (almost 55 now)..again, thanks for the info. Every bit I learn helps!

[PMRpro Ambassador in reply to sidra1968]

If you are going on a cruise, do make sure you have enough pred with you to go to an emergency dose for the duration. Once you are on the ship it will be difficult to get any and they almost certainly won't have it in the medical centre.

[sidra1968 in reply to PMRpro]

Yes,thanks..I made sure I got it early..had to do a "vacation override", but they got it for me. Feel decent today, rested yesterday. Going to rest today, too..I leave tomorrow or the 3 hour drive to the hotel airport..then early morning flight Friday. I will rest that night, too and we depart Saturday. This is gonna be interesting, if nothing else. BUT, at least my mind is much more at ease than when this happened on NYE and I had no diagnosis, so I am mentally prepared for anything to happen.

[SheffieldJane]

I wonder if this is Pulsatile Tinnitus? I had this symptom early on in my PMR disease. I would share it with the doctor though.

[LucilleG in reply to SheffieldJane]

When it first occurred back in January 2021, I did ask the doctor if it was pulsatile tinnitus and he said no. It did go away after a few weeks, but that was when the other painful symptoms kicked in.

Since it's return over the past month, it did go away when I upped my does to 4.75 mg, but I'm noticing it again, although it's not as loud. I'm wondering if I need to up my dose to 10 mg for a few days and then go back to 5 mg? I should also mention this to a doctor - that it was one of my first symptoms (and why the eventual diagnosis 5 months later had the GP start me out at 40 mg) and that it's returned almost at the 2 year mark of taking prednisone (with finishing a taper from 5 to 4.5 mg, and then upping to 4. 75 for the past few days).

Thank you for suggesting I talk to a doctor about this!

[SheffieldJane]

Good luck! The others have covered dosage etc.