Thinking of our conversation on pred level and how to handle stressful moments to keep adrenal drama at bay....

[Wallysma]

So things for me and PMR and pred have not gone the way a lot of folks have. I read about when you take the pred in the beginning most have amazing relief then begin the journey of slowly reducing to find the next good dose. Then reading the symptom tea leaves of symptoms to make decisions on the next dose with the goal of getting that same experience from the beginning but with less med.

When I was diagnosed it was not explained to me what PMR is do.dince I have lived with 4 other autoimmune conditions since the 90's I got instructions for the pred and left focusing on the med schedule I was given. While I had great relief I never had full relief and that took several days.

What began after that was an insane roller coaster ride up and down on dosing, mostly up...it was crazy. My symptoms were ok but several were not touched. They were debilitating! I spent a lot of time m e on here reading, writing, asking.....learning.

So I have been on 29.5 pred for.months but my issues have worsened. I know.I have been on this dose for too long but I just moved to a new state and started feeling sick not long after getting here so I don't know anyone....I have to be.able to function

My rheumy lost her mind st the.dose and so we tried Lefludemide...which made me 100% total mess on the first.day....it was crazy. So she tested me and my RA is active so.we.set up for infusions of Actemra. I have one so far.

I have developed a lot of the side.effects of prednisone. It is hard to look in the mirror, I have gained a lot of weight and am trying low carb but...I also am carrying a lot of fluid. And now they thi k I have venous stasis in my legs...which are a mess. I have to bandage them because the blisters popped and I have to deal with wounds and they drip fluid. This has been going on for months and today I finally.have this 1.5 long scan or whatever that will confirm what is happening.

I have bad knees and OA, RA, fibromyalgia, Sjogrens disease. So thete is pain that is not PMR...but I had/have the typical pain points of PMR.

SO: about a month or so ago my.legs/knees.started.to.really cause problems. Basically it is really hard to walk even around the house, which is one level and small. At this point I am huffing m and puffing...hanging on to walls, using my cane...but it is bad. I am not sure how I will get from my car into the building layer this am....it is that bad.

SO #2: I am stressed beyond my limits. Hobbling around here panting and sweating just.trying to get to the loo. Weeks of this is too much,

Yesterday started to feel lightheaded and just strange. Then the posts about adrenal crisis and pred hit me. Has this situation.stressed me to the point where I need more pred because of the constant n stress.and physical limits and having to push through.

I added 5 mg when I took my dose at 1:30 AM and my.one leg feels better. After getting up dealing with the dog and making coffee I started to feel lightheaded again and shakey.again.

Is the 5.ok? Should.I do more? My stress is about to go.up as I.have to get dressed and go to this test....so I.don't.to put myself at-risk when it never occurred to me at this high dose it could be an issue. But....

Ok... I hope.this makes.sense and my concern is clear. I am grateful for your reading this long explanation. Take care!!

Mickie

[PMRpro Ambassador]

If you are on the best part of 30mg pred the likelihood of it being an adrenal crisis is very very low UNLESS there is a serious problem with how you absorb pred or your pred receptors aren't working, Adrenal crisis is less likely at any dose over 10mg, it is above the usual steroid replacement dose for someone with Addison's disease when the adrenal function is totally shot.

Have you been checked for diabetes? A long time on high dose pred may be causing problems there.

[Wallysma in reply to PMRpro]

Hi Ms.PRO....I hope you are well.

That is what I thought.....but then it did occur to me it has been like doing way too much every day....no way around it since I am just trying to move around the house. And it's been long term. Then yesterday it popped in my head. If you are on a high fose and drop suddenly would that make a diffetence....yes obviously but not necessarily so crisis...but just you have used it up. Know what I mean? I do lose the effects as even9ng comes on. I want to start reducing but that is weeks away to even just my 2nd Actemra and there are no guarantees.

Just had labs done week ago no diabetes. When you try to walk on legs extremely painful and the hips chime in

...you shake and sweat and slowly make your way. It's probably just that overdoing. But I felt I should ask about am I depleting the benefit of the pred at these moments which are all through the day. Anyway I need something to give but not sure what.

[PMRpro Ambassador in reply to Wallysma]

What sugar tests? Spot tests only show what is happening just then, Hba1c is an average so doesn't register the extremes and what you are describing COULD be hypos, you would have to test at that moment. Or have a continuous monitor

[Wallysma]

I had the Hba1c a month ago and glucose labs every month and they ate all in the same range...and have been. Obviously we are watching it. My PC and I have talked about it and I will work with him here on out. I will see him again in the next couple of weeks. I want my rheumy to focus on the rheumy side....I was just looking at my daily notes where I track my pain meds and saw that the pred wears off quite a bit and my leg spasms started early April so earlier than I thought. It becomes a blur......

Any general advice for me is welcome. I am in such a bad place and have no clue what I should do. I think the pred's affect on muscles, etc. is a part of this too. I wish.I could know what damage is there and what is what...RA vs OA vs PMR.....vs. Pred. Anyway...mthanks as always.

[SheffieldJane]

I have nothing more useful to add and my heart goes out to you. I pray that you get wise doctors who set you on the road to recovery. My instinct says less meds not more and some physical help in the home. Moving home is so stressful and will magnify how badly you feel. I know what is feels like to be casting about for a correct diagnosis and a clear treatment path. 🌷

[Wallysma]

Jane thank you for the kind words. I also agree less is better, I hate that this is happening. Especially since I have always managed my autoimmune stuff quite well. PMR beat me for sure. Anyway I just got out of the sonogram test, no blood clots at least. That is a good thing. Will find out the rest of the results on June 1. I am glad I posted ....I have been around and around as things change....although it's usually the same main theme...and asked for help here. I may call my.pain doc to see what he thinks since it is several things at play at the same time including PMR and the pred.

I am so grateful for the words of support. I know you have been through so much! I wish you the best as well.

I will keep you on my thoughts.

Mickie

[powerwalk]

Oh my heart goes out to you. I hope you find relief soon and proper meds. Sounds exhausting and scary. Let us know how you get on.

[Wallysma in reply to powerwalk]

Thank you so much. I appreciate the support. Hopefully I will figure out a path that will work soon.You take care of yourself! Be well.