ANCA Vasculitis: Side effects of 60 mg of prednisone a day?

No energy is a classic side effect endured by most vasculitis patients and it goes on and on and on. An internet search on “spoon theory” comes up with lots of helpful explanations to help us cope with this and explain it to others.

If you do an internet search on side effects of prednisone, you’ll see you’re not alone. Unfortunately. Have you asked your healthcare provider about drugs with similar benefits but less toxicity?

You’re right and many doctors don’t know where to start bec they have no idea what they’re dealing with. In my case, the primary symptom was a horrible, hacking cough that went on for 6 months, masking the impending kidney failure. The pulmonologist ran every test he knew of and even repeated some before throwing his hands up. My primary said I know you’re sick but I don’t know even where to refer you. There are some broad blood tests that help doctors narrow down the search for the problem. They just need to know which tests to ask for. It’s a problem.

wow. it is really hard to diagnose it seems. Other than the ANCA blood tests, and maybe the inflammatory ones (CRP and ESR) are there other blood tests that help determine? It seems awful that one has to resort to organ biopsies, etc.. to diagnose.

After the blood test indicating I was ANCA positive, 23 !!! vials of blood were drawn to help narrow down the location and extent of damage. I think the biopsy is to confirm a diagnosis and, in the case of kidney involvement, to assess the amount of damage. The GFR number indicating percent of kidney function. Mine was down to 15%-17% at diagnosis. Much lower and it quits functioning. Was lucky to get referred to a medical school in which people in Rheumatology were familiar w vasculitis and could call on specialists in Nephrology to determine extent of the problem and help develop treatment plan.

I’m hoping once they reduce the prednisone he will get some energy back and start feeling better. I will have to look up spoon theory

They have drugs comparable but far less toxic but I suppose reserved for “certain” individuals? I asked the question, directly to a Health Professional administering that deadly concoction to my sister before her untimely demise. He was so caught off guard that he hesitated, then referred me to someone else. I can only suppose that the consciousness of him got the best of him and the very next encounter between he and I, erupted the subject and he said Yes, there definitely is an alternative drug, used for what Prednisone is given, WITHOUT the dreadful side effects. Btw when she decreased the amount in her own, without doctors direction, during treatment, she did much better. Blessing to you in your journey.

@joroy we just happen to have a discussion on The Spoon Theory!
https://connect.mayoclinic.org/discussion/how-do-you-plan-your-day-and-conserve-energy-are-you-a-spoonie/
It’s very good and can help you to pace your day.
Try it!

When you tapered down did you start feeling better?

Yes. Absolutely! At 20 mg daily I started to feel normal. 10 was even better. I have never gotten off completely. On 2.5 mg for past 2 years. Has not had any noticeable effects on bone mass which is good for my age. Best of everything to you on this journey.
PS The Vasculitis Foundation just published a paper on low dose steroids (with Rituxan) as effective as high dose. Just read it today.