Second guessing myself on how to proceed

[perceptual63]

I've had PMR since January 2022 and was initially put on methylprednisolone (4 mg twice a day) for about 2 months but that made me ill so was switched to prednisone (5 mg twice a day). I started tapering several months later in 2022 and got down to 7 mg but then flared so went back up to 10 mg and stayed there for several months but I was still experiencing residual pain and then asked rheumatologist if I could increase to 15 mg and she agreed. This was around April 2023.

In August 2023 my housemate had major back surgery and I became his 24/7 caregiver for 2½ months. In addition to taking care of his dogs at 5 AM, cooking for 3, house cleaning, laundry, food shopping, and his doctor appt.'s. I felt remaining at 15 mg would be in my best interest to help me deal with everything and it turned out to be a good decision.

For the record, being a 24/7 caregiver is crazy stressful so my hats off to those who do it for much longer than I have had to.

At the end of October 2023 I began a taper from 15 mg and by June 2024 I was at 9 mg but then started to feel pain in my buttocks and the back of my thighs so I increased to 14 mg for 12 days and to much of my relief was no longer in pain. After 12 days I then dropped back to 10 mg but now I experience the same buttock and thigh pain but with some good days and bad days. I mentioned my buttock and thigh pain to my rheumatologist and thought it was muscle weakness from prednisone and she said muscle weakness doesn't cause pain, but I don't know if that is true.

Where my second guessing is coming in is with several medical procedures/diagnostics I will be going through in the next 1½ months (bone marrow biopsy, endoscopic ultrasound, colonoscopy, 7 day heart monitor, echocardiogram, carotid ultrasound, and removal of a chemosis in my eye).

Currently I'm on 10 mg of prednisone but my rheumatologist wants me to taper and my gastro doc would love for me to get off prednisone all together and go on a biologic (Kevzara) instead. Neither of my doctors know of all the procedures/diagnostics that I will be going through in such a short period of time.

I don't think I should continue to taper at this time but am unsure how to proceed heading into all that is in front of me in the next 1½ months.

Do I wait to really flare (if I'm going to flare?) to then titrate up on my dosage (Sick Day Rule) or do I preempt any such flare by increasing my dosage to, say, 15 mg and remain there until the "storm" is over?

I'm trying not to stress about all of it.

Thank you. 🙂

[DorsetLady PMRGCAuk volunteer]

Definitely no tapering on the immediate horizon- no matter what your clinicians may want, and maybe if they were aware of your upcoming procedures they’d give you a a bit of breathing space. .

If 10mg is just borderline - then I’d be inclined to increase at little - maybe not as high as 15mg initially. Perhaps try 12 or 13mg for a week and see if that helps. If not, then obviously you’ll need 15mg until all procedures completed.

[perceptual63 in reply to DorsetLady]

Thank you for your reply and I'm sorry for the long delay in replying as yesterday was such a busy day. 🙂

I saw for the second time my new ophthalmologist regarding the chemosis (blister) in my eye and he thinks it's due to an allergy after he put me on a month of steroid/antibiotic eye drops. It started to resolve on week 3 but blew up at week 4 when the eyes drops were tapered to once a day. He wants to repeat the treatment to see if it resolves this time but in the meantime I'm to look for an allergen source that is contributing to this blister. But for the life of me, I can't think of anything that I've changed (i.e. laundry detergent, fabric softener, soap, etc.) to warrant such an allergy and have been on an antihistamine for ages so I don't know what it could be.

Aside from treating my chemosis, my ophthalmologist is very concerned with my eye pressure that is very high, and being so, he's put me on glaucoma eye drops in hopes to bring down the pressure and has referred me to his colleague who specializes in glaucoma. 😳

But getting back to perhaps raising my prednisone to help me get through these next couple of months I feel I'm in a "damned if you do, damned if you don't" situation where increasing my prednisone (whether flaring or not) may help me cope in the ensuing couple of months with all my procedures/diognotics but might not be a good idea for the pressure in my eyes. But then again, it might be okay to increase my prednisone because I'll be on eye meds that lower eye pressure.

Do you think this make sense?

I so dread telling my rheumatologist all this. 🫣

I need a vacation (holiday).

[PMRpro Ambassador in reply to perceptual63]

Just because YOU haven't changed something doesn't mean the manufacturers haven't.

Raised occular pressures aren't unusual but the drops are enough for the majority of patients, it is quite rare not to be.

[perceptual63 in reply to PMRpro]

You make a good point about me not changing products but the manufacture might have. Thanks for that insight.

Concerning the glaucoma eye drops. you also shed some light on that it's not unusual to be on glaucoma eye drops for increased eye pressure, and in my case due to prednisone.

What made this a little alarming is that it seemed my eyes were suddenly cascading in the wrong direction where my eyesight is being affected. My vision is like swimming under water with my eyes open.

I'm hoping with all the eye drops being prescribed my vision will improve.

In the meantime, I'll try changing my laundry detergent, fabric softener, and face wash.

Thanks, again. 🙂

[PMRpro Ambassador in reply to perceptual63]

The eye effects can be due to pred but not the pressures - lot of us found problems focussing.

Two of those are dead easy - I gave up fabric softeners years ago, you get used to it and remove a LOAD of chemicals from life. And only water has come near my face for even longer There are non-chemical alternatives for detergent too.

[DorsetLady PMRGCAuk volunteer in reply to perceptual63]

How high are your pressures?... mine did go up a bit when on high GCA doses... but the eye clinic [attending due to sight loss through GCA] just monitored them, and they did return to normal as I reduced the Pred.

[perceptual63 in reply to DorsetLady]

My eye doctor noticed my high eye pressure on the previous appointment and said at yesterday's appointment that it's higher than last time but did acknowledge that since I was recently on steroid eye drops for my eye blister that perhaps is the reason why it's now very high. He didn't specifically say numbers concerning how high is very high but a technician who also checked my pressure prior to seeing him also mentioned that my pressure was very high where she became very concerned and thought at first the eye pressure meter wasn't working right.

The interesting thing is I'm only on 10 mg of prednisone (with the highest being at 15 mg) which is nowhere near a GCA dosage that you were on to warrant such an eye pressure change. The eye doctor is very concerned with long term high eye pressure and damaging my optic nerve leading to a loss of vision.

But now at least I feel my eyes are being better taken care of than the local eye glass store that also does eye exams that was done just 3 months ago. 🙂

[PMRpro Ambassador in reply to perceptual63]

It doesn't matter WHY it is high - it needs managing with drops. But if you are on pred - that is the most likely reason and they should know that. And it isn't unusual for PMR patients to develop raised pressures despite rarely being on over 20mg.

[PMRpro Ambassador]

"my gastro doc would love for me to get off prednisone all together and go on a biologic (Kevzara)"

The way to go about that is to add Kevzara and then taper off the pred as the Kevzara allows it. You don't need to stop the pred first. I was at high pred to cope with caring responsibilities and was only able to get the dose down after a massive flare after my husband died by starting Actemra which has enabled a taper from 19 to 7mg pred.

You are right to be reticent about tapering with all that lot on your plate. You need to tell your other members of your medical team. Too much to hope they will talk to one another but they do need to know,

You don't use Sick Day Rules for a flare - there is a separate protocol for that, In a flare you add 5mg to the dose where you flared for up to 10-14 days and then drop back to the dose above where you flared. Not a lot of difference in some ways but for a different situation. And it presupposes the flare is due to overshooting the dose you need. A flare can also be due to an increase in disease activity - and that is different,

[perceptual63 in reply to PMRpro]

Thanks for reply PMRpro and my apology's for the delay in replying.

Yesterday I went for a follow up with my new eye doctor regarding my chemosis (blister) in my eye and he thinks it's an allergy and it putting me on another course of steroid eye drops for another month to see if it helps decrease the blister size.

But my eye doctor's biggest concern is that I have high eye pressure in both eyes and it has increased since I last saw him a month ago and is worried of this high pressure damaging my optic nerve. So he also prescribed glaucoma medication eye drops in hopes to bring the pressure down and then wants me to see his colleague who specializes in glaucoma.

Are Actrema and Kevzara similar?

I ask 'cause I know you are on Actrema but for me I would be on Kevzara here in the States and was wondering if either those medications would effect the eyes like steroids do as in "steroid-induced glaucoma" that seems to be where I'm heading.

I understand that Actrema a Kevzara are steroid-sparing meds and that I would sill have to taper prednisone while on Kevzara but if I could lessen some of the prednisone eye pressure and cataract burden on my eyes it's something I should seriously consider as I will still be on prednisone for quite some time.

Like I mentioned to DorsetLady, I need a vacation (holiday).

[PMRpro Ambassador in reply to perceptual63]

They are both IL-6 antagonists with slightly different mechanisms, the difference is basically that Kevzara is FDA-approved for PMR. Once you are on one of them it is relatively easy to taper the pred within a few months though half of patients don't get to zero because their inflammation is not due to the action of IL-6 but one or more of other mechanisms. Biologics are extremely specific for one thing. In the US there isn't usually a time limit on the posh drugs - if they work well for you you may not be on pred for long at all, at least, not on much pred!

Cataract isn't much of a problem really - excellent surgical options are available and in fact some techniques deal with raised pressures at the same time.

No need to apologise for a delay in replying - I don't expect a reply unless I asked a specific question as I don't ask questions without a reason. Usually to improve our responses to you!!!