Still Struggling with that last mile on the path to 0 mg

I read all the problems with being on prednisone. I was on and off prednisone for 35 years, mostly on. I am down to 2.5 mg of prednisone now, working down to zero. The only problem I noticed with prednisone was thin skin. I would bleed with only the slightest abrasion. So slight that I didn't notice until I saw the blood. What are all the problems being on prednisone? I found the drug a positive live saver with regards pain.

The problems vary depending on your dose, but I experienced severe insomnia, weight gain, moon face, elevated cholesterol, muscle problems, a bad taste in my mouth for several months, mood swings, lowered metabolism, a tendency to bruise easily, and thinning of the skin. Other side effects can be higher blood sugar, diabetes, thinning of the bones, accelerated cataracts, and glaucoma. Prednisone did save my life and vision from GCA, but it can be a lot to deal with.

I don’t know for sure, which of my new issues are from prednisone, but I sure hope that my glaucoma and thinning hair reverse themselves.

As @jeff97 has detailed all those things are potential problems from "long term" prednisone use. I particularly liked the "accelerated" cataract formation because my cataracts took less than a year from the onset of cataracts to lens replacements at the age of 40. If thin skin is your only problem then consider yourself lucky.

I understand your description of being "on and off prednisone for 35 years, mostly on." I was the same for about 15 years during the treatment of my original autoimmune problems. As long as I could taper off Prednisone quickly and remain off in the interim between high doses of prednisone, I didn't have too many problems except for cataracts.

My problems mostly happened after PMR was diagnosed when I needed Prednisone daily at moderately high doses for another 15 years. I called everything that happened during this time period my "new normal." I didn't realize that there was nothing normal about decades of prednisone use until I tapered off prednisone. That was when many things normalized again.

Sometimes I think PMR was triggered by my prior intermittent prednisone use. Repeated bursts of high dose prednisone use over the years was an insult to my immune system. Chronic prednisone use after PMR was diagnosed compromised my quality of life even more. Prednisone did relieve pain, however, pain was my primary focus. More often than not, pain was my only focus in life.

Technically, I still have PMR but I'm not being treated with Prednisone anymore. If PMR is still present and I feel more normal without all the pain after I tapered off Prednisone, then I can't blame PMR for everything. On the other hand ... I don't blame Prednisone for everything either. There were other "confounding variables" that we all have to contend with.

I wondered why my rheumatologist seemed more focused on getting me off prednisone after the first few years of PMR. I'm glad they were finally able to get me off Prednisone. I didn't want to be on Prednisone for the rest of my life but I thought I was going to be. Lifelong Prednisone was never the intent but for a while it seemed like that would be the end result. My perspective changed after I got off prednisone.

I'm grateful for prednisone. I only wished for an "Alternative to Prednisone."
https://www.healingwell.com/community/default.aspx?f=16&m=4073463

Oh yeah, I forgot about the cataracts that were found at the same time as the glaucoma. But since I was 70 at the time and my mother had had glaucoma at 80, that left room for doubt.

Age related deterioration is usually blamed more than either our autoimmune disorders or prednisone.

I wasn't very old and I didn't have PMR yet when I had a rapid onset of cataracts which progressed very quickly. The only thing to blame was prednisone but uveitis shared some of the blame for my left eye. I never had uveitis in my right eye until much later and it was a mild flare.

Fortunately the cataracts didn't progress at the same rate in both eyes. I couldn't see anything with my left eye when I had cataract surgery. A year later my right eye followed along and I had cataract surgery on my right eye.

Glaucoma only happened when I took Prednisone. It was called Prednisone induced intraocular hypertension but that can lead to Prednisone induced glaucoma.
https://pmc.ncbi.nlm.nih.gov/articles/PMC5577123/#:~:text=Among%20the%20ocular%20side%20effects,resulting%20in%20steroid%2Dinduced%20glaucoma.
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Fortunately my ophthalmologist stayed on top of the ocular hypertension. I didn't have any symptoms of high intraocular pressures except for one time it felt like my eye was going to explode.

My blood pressure registered as high as 210/110 when I was on Prednisone. No explanation for my high blood pressure readings but it was belatedly treated with three blood pressure medications. The treatment came after left ventricular hypertrophy and cardiac arrhythmias were detected on a routine EKG done because of exercise intolerance.

Now I'm off Prednisone and I don't seem to need any blood pressure medications anymore.

Assuming that everything setttles down into some sort of normal, I'm wondering if and when and for how long I should try to pause my glaucoma medication to see if it goes away? I guess that's a question for my doctor, but have you ( or anyone else) tried it?

Is the glaucoma medication you take Cosopt?

First I want to emphasize something. You have to be very honest with your doctor. Saying you are doing something when you aren't creates a lot of confusion. The difficulty was deciding if Cosopt reduced my intraocular pressures or if stopping prednisone resulted in normalized eye pressures.

Furthermore, Side effects from Prednisone don't resolve as soon as you stop Prednisone. I was off Prednisone for 2 years before things gradually normalized.

Cosopt is another medication I no longer take since I stopped prednisone. There was some controversy because my ophthalmologist for 25 years said I could tolerate higher intraocular pressures. The goal was to keep my eye pressures under 30. When my intraocular pressures were over 30 - I was always on Prednisone. I was called a steroid responder, which is someone whose intraocular pressure (IOP) increases significantly when using steroid medications. This rise in IOP can eventually lead to steroid-induced glaucoma if not addressed.

When I tapered off Prednisone my eye pressures stayed under 30 and were closer to 20. My current ophthalmologist wanted to treat intraocular pressures over 20 which is the more common practice. My current ophthalmologist actually said I had glaucoma instead of "steroid induced ocular hypertension."

I wasn't very diligent with the Cosopt drops after I stopped Prednisone based on what my first ophthalmologist told me for many years. At one visit with my current ophthalmologist, my intraocular pressures were under 20 when I wasn't doing Cosopt drops. I confessed to not using Cosopt so my current ophthalmologist agreed that I didn't need Cosopt anymore.

The same thing happened with each of three blood pressure medications. I had extremely high blood pressure when I was on Prednisone. My high blood pressure caused other cardiac problems so my primary care doctor was reluctant to stop my blood pressure medications. I thought my blood pressure was getting too low after I stopped Prednisone because of frequent dizzy spells and blackout spells without passing out. My primary care doctor agreed to stop my blood pressure medications one by one instead of all at once to see what happened. Two years after stopping Prednisone ... I finally got off all my brood pressure medications.

Something similar happened with atorvastatin for high cholesterol. When I stopped prednisone, my cholesterol level was gradually getting too low so atorvastatin was stopped. After atorvastatin was stopped, my cholesterol level increased again and was mildly elevated. My endocrinologist said I was "extremely sensitive' to statins even though I had been on atorvastatin the entire time I took Prednisone. My endocrinologist recommended a different medication to control my cholesterol level that wasn't as strong.

My last comment doesn't seem to have posted, so I hope this doesn't turn out to be a duplicate.
I take Timolol Maleate. My eye pressure has been normal since I started it. I don't like that it's a beta blocker, but I press on my tear ducts for a couple of minutes after application to try to prevent anything from absorbing into my system. That doesn't stop me from missing my eyes and getting drips on my face though.
My eye doctor likes it because it's uncomplicated to use and effective, but would be willing to put me on something else. I told him that I'd wait a while after I was off of prednisone before stopping it. I would contact him before I took any action. My impression was that other options that had fewer potential side effects might require more than one medication.

Cosopt is a combination of two medications: dorzolamide (a carbonic anhydrase inhibitor) and timolol (a beta-blocker). Cosopt was all I ever took to control my IOP.

I don't know how much timolol was absorbed into my system from doing eye drops. It is interesting that my resting heart rate was always in the 50's. The cardiologist said I might need a beta blocker to control my blood pressure in addition to the other 3 medications used to control my blood pressure. The cardiologist didn't want to start a beta blocker saying I was already beta blocked. Bradycardia probably isn't as bad as tachycardia unless you are passing out,
https://www.mayoclinic.org/diseases-conditions/bradycardia/symptoms-causes/syc-20355474