29 July 2025

MY SITUATION
I have GCA (confirmed by symptoms of headache and jaw claudication and by biopsy in February 2025).
I am male, 72 years old, retired, comfortable but not rich, speak English and French, weight-stable at BMI 22, living a low-carb lifestyle for 3.5 years (constant moderate ketosis).
I am an alcoholic with nearly 40 years complete sobriety.
I am in the public health system of the Algarve, Portugal (SNS).
I have a small private health insurance, but with the co-pay I cannot really afford to use the private system much.
The SNS doctors are fine, but the system is overburdened and inefficient.
The ER situation is particularly bad (average waiting time about 12 hours).
For example, my family doctor (Dr. Carneiro) is responsible for more than 2000 people.
Tests can take weeks or months to happen, and I can only see my doctors (family doctor and rheumatologist) every 3 months or so (and even then, appointments are only 15 minutes or so - I must enter with my thoughts and questions very well-organized in advance).
Dr. Teixeira is my rheumatologist.
So the normal advice of "Talk with your doctor about..." is really not applicable to my situation.
In the SNS, there is a certain amount of prejudice against me because I am an expat who does not speak Portuguese very well.
I have learned that I must more-or-less manage my GCA myself.
The good news is that labs are relatively cheap here with my private insurance, and I can order most of them myself.

OSTEOPOROSIS
A complicating factor in my case: I was kept at 20mg of prednisone for 6 weeks while my autoimmune doctor (Dr. Gina) was on vacation.
I did not worry about this at the time, thinking 20mg to be a relatively small dose in comparison to the 60mg prednisone I started with.
But now I know that 20mg is actually a high dose (while 60mg is close to the max that the body can handle, and must be tapered down quickly).
At the time, my GCA symptoms were dormant and my PCR and ESR numbers were extremely low - meaning there was no clinical justification for the six weeks of prednisone at 20mg per day.
Five weeks into the six weeks at 20mg, excruciating back pain suddenly began.
Now I have three compression fractures in my back and Osteoporosis has been diagnosed.
This is treatable but not curable.
I cannot prove that this was caused by six weeks of prednisone at 20mg with no justification for not continuing to taper, but I have no doubt that this is the primary cause of my bone density problem now.
I am no longer under the care of this SNS autoimmune doctor (Dr. Gina), having switched to an SNS rheumatology doctor (Dr. Teixeira).
I have learned that I must more-or-less manage my bone problem myself, along with the GCA.

VISION
In September 2024 (regular checkup with Dr Lares) my vision was 90% in both eyes.
In May 2025 (8 months later) my vision was 80% in left eye and 70% in right eye.
This may be due to GCA and/or developing cataracts (the cataracts themselves may be related to the GCA and/or prednisone).
My vision must be controlled regularly - Dr Lares suggested six months.

GOUT/URIC ACID
A legacy of my alcoholism is gout, since about age 31.
For 39 years, my uric acid was not particularly elevated, and I had the standard classic 2 or 3 gout flareups per year in a big toe, some flareups worse than others, but manageable without anything but ibuprofen for pain.
Starting October 2024, I began to have constant flareups in one foot then then other, with constant high uric acid.
Finally in November 2024 I began febuxostat, which brought down my uric acid from 9-ish to 4-ish in a month.
I now believe that the uric acid/gout problem was the opening salvo with my autoimmune condition.
Now, 40mg febuxostat every other day seems to keep my uric acid around 4 or 5, without gout flareups.

GNG, GLUCOSE/INSULIN
It is my understanding that GCA and/or prednisone stimulates GNG, to the point of T2D for some people.
I have lived a low-carb lifestyle since early 2022, in ketosis nearly non-stop (I monitor glucose and ketones often with a Keto-Mojo, a finger-pricking device).
My markers are a mixed bag: my morning fasting glucose labs tend to be normal (70-90 mg/dL).
My HbA1C has been on the high side (5.5-6.0 pct).
M fasting insulin has been variable (from about 5 to 12 UI/ml; was 7 about a month ago).
My late-afternoon Keto-Mojo readings (usually about a 6.5-hour fast since lunch) have been variable:
- ketones 0.7 to 2.5 mmol/L (usually around 1.4 mmol/L )
- glucose high (6-8 mmol/L, but now coming down with prednisone tapering to about 5.3 mmol/L.
(The Keto-Mojo glucose reading always seemed inconsistent with the morning fasting glucose, but I read that this is a late-afternoon prednisone effect).
I have a prescription for Metformin, but have not started it (I hesitate to add another strong drug as long as fasting insulin is relatively low).

WHAT I KNOW/BELIEVE
GCA is a form of vasculitis, particularly dangerous due to the increased risk of stroke and/or vision loss.
The basic standard protocol is prednisone to stop the inflammation, then tapering off prednisone, then return to prednisone during relapses.
If steroid-sparing agents are used, usually the reliability of PCR and ESR diminish or disappear, and monitoring must be done by analysis of symptoms and/or imaging.

SITUATION NOW (end-JULY 2025)
- I am at 5mg prednisone.
- I have avoided steroid-sparing agents and metformin.
- I supplement vit D/K2, calcium, chromium picolinate (possible help with glucose control), bisglicinato de magnesio (for deep sleep)
- I used to supplement B-12, but my last lab was 994 pg/mL, so I stopped.
- At higher doses of prednisone, I took pantoprazole, but Dr. Teixeira recommended to stop unless I started having stomach problems.

FOOD/LIFESTYLE
I have two 'windows' of eating per day: 11h-13h and 17h45-19h45.
I rarely snack.
I do not count calories or carbs; I simply avoid high-carb foods.
For the past month, I am weight-stable around 71 kg.
I do 50 repetitions of a public exercise pull-down machine that does not hurt my back.
I walk about 3 km every day.
These days, I sleep from about 23h to 7h. Usually I get up once to go to the bathroom, and I take the bisglicinato de magnesio pill (for deep sleep).
I have many creative/academic projects that interest me, but sometimes I am discouraged with life.
I live alone. In the past, I would often visit Switzerland, but I have not been able to go this year. The dangers of flying with vasculitis are not clear to me.

MY SELF-DEVELOPED PROTOCOL
Effectively, I have two conditions to monitor and treat: the vasculitis (GCA) and the osteoporosis.

My personally-developed plan moving forward is:
- to taper off to zero prednisone if possible
- to avoid the steroid-sparing agents (to keep visibility of PCR and ESR)
- keep regular SNS medical appointments as often as I can get them scheduled
- to do a full set of labs at the beginning of each month (SNS-ordered when possible, otherwise I order/pay)
- to do PCR, ESR, and Leukocytes at mid-month (I order/pay)
- to decide on an imaging technique that I can afford (if not ordered by an SNS doctor) and do regularly (a few times per year), in order to monitor inflammation.
- to consult my ophthalmologist every 6 months or more often, if vision is deteriorating for comparison.
- to decide on a regular test to monitor the condition of my bones (either SNS or private) every few months.

Please evaluate my protocol.

End