Starting treatment with Kevzara: My journey

Hi @edinnola, Thank you for starting this discussion and sharing your PMR treatment journey with Kevzara. I think this will really be helpful for other members struggling with questions. @dadcue, @wilmingtonemperor, @mahernm, @faerifrann, @nyxygirl, @paulagcl, @martiesowers and others have posted about Kevzara and may have some thoughts about your question on the possible cause of an enlarged spleen.

Hi; I am on a 14 week taper from prednisone in order to move to Kevzara. I was off prednisone entirely for 5 weeks. Three weeks into the pause the symtoms came back big time. I had a five day flare that was brutal. Had labs and the Sed rate was out of sight and the hemoglobin numbers were way off also. So now I am back on 20mg for 2 weeks, then 15 etc. It will be next year before the tapering down is over. I am blessed that as retired military my co-pay will very affordable for Kevzara. You love and hate prednisone at the same time. Wish you absolutely the best. Please keep posting as you make the switch.
Wilmington Emperor

Many things can cause an enlarged spleen including autoimmune diseases. Chronic inflammatory conditions can cause an overactive immune response and spleen enlargement. Let's hope whatever underlying condition has caused your spleen to enlarge improves and your spleen returns to the normal size.

I hope being on Kevzara so soon will be helpful because "long term" prednisone use wasn't very kind to me. I think prednisone in the "short term" is a good thing. I'm not sure what constitutes short term use as compared to long term use. It probably depends on the person.

Don't expect Kevzara to work immediately like prednisone does. My rheumatologist said generally it takes about three months to know if a biologic is working or not.

I wasn't sure Actemra was working so I tapered by 1 mg per month for the first three months As I gained more confidence after 3 months, I tapered by 1 mg per week until I reached 3 mg.

When I could maintain a 3 mg dose of prednisone, an endocrinologist was consulted. Secondary adrenal insufficiency gets complicated. I had to stay on 3 mg of prednisone for an extended period of time.

Prednisone replaces the cortisol our body normally produces. You will not feel well when your cortisol level is low. The symptoms of secondary adrenal insufficiency can mimic PMR symptoms so it becomes very dificult to know if PMR or adrenal insufficiency is the problem. Sometimes it is a combination of both PMR and adrenal insufficiency.

The treatment for adrenal insufficiency is cortisol replacement with prednisone or another corticosteroid. The medication that causes adrenal insufficiency is used to treat it.

You can see how complicated this gets. I always say that taking prednisone is an easy thing to do. Getting off prednisone is the hard part.

Hopefully, Kevzara will help you get off prednisone as soon as possible.

I am on Kevzara, too, starting in April, soon after I was diagnosed and started on prednisone. Now I am starting to taper off from 9 mg but at 7 was exhausted all the time so am back on 8 and I think will try a slower taper.

"Extreme fatigue" is one of the primary symptoms of adrenal insufficiency. Autoimmune disorders like PMR also cause fatigue but not the magnitude of fatigue that people experience when their cortisol level is too low.

Approximately 7 mg of prednisone is when people begin to experience a shortage of circulating cortisol in the body. Somehow you need to find a way to maintain the 7 mg dose of prednisone and continue to decrease your dose over a long period of time. It is why we are instructed to taper off prednisone slowly in the first place.

I completely understand why you would increase your prednisone dose. I might have done the same on many occasions. Unfortunately, increasing your prednisone dose won't get you off prednisone any sooner. Taking more prednisone will continue to suppress your adrenal function and make it harder to taper off.

Discouraging.

So now have 3 doses of Kevzara on board. Next dose is Dec 5. Absolutely no adverse side effect or adverse reaction. Down to 10mg of prednisone and depending on labs Friday, expect Doc to drop me to 5 mg. Feel as good as I have felt through this whole thing. Can't attribute it all to Kevzara at this point. Expect to go off prednisone entirely next month(fingers crossed). Good luck.

Hi ... I really hope Kevzara works for you. Are you doing weekly injections? I'm not sure what the dosing schedule is for Kevzara. I assume you have PMR.

I shouldn't compare my experience with Actemra with your experience with Kevzara. You and I are different too so other variables to consider.

I get my medications from the VA so we do have the military in common. I currently have zero copay for Actemra but the VA does get some reimbursement from my Medicare supplement.

I wouldn't be surprised if you could go from 10 mg to 5 mg in one shot! However, 1 mg per week might be better. You are heading into the adrenal zone and that is another beast to slay.

I went with a 1 mg per week reduction from 7 mg to 3 mg until my rheumatologist intervened and told me to stay on 3 mg until I could be evaluated by an endocrinologist. An endocrinologist didn't clear me to go to zero prednisone for another 6 months until my cortisol level was in the low end of normal. My endocrinologist said it would be okay to go from 3 mg to zero but I should be prepared to take prednisone again "if I felt the need."

My first attempt at zero didn't go as planned. Unexpected things can and do happen.

There are other factors to consider like how long you were on prednisone and the cumulative dose of prednisone for the duration of time you took prednisone.

Good luck and I hope things continue to go well. I have been off prednisone for a couple of years. I currently do Actemra infusions monthly with minimal if any side effects.

Hi everyone. I have had PMR for about one and a half years. Up and down on Prednisone, on MTX, and just had 4th dose of Kevzara. I am feeling very good honestly, better than I have since this journey began. I have tapered down to 5mg of Prednisone and will continue to taper down about a half milligram every 2 weeks. There is hope for all of you.

@edinnola good luck with Kevzara! I did change my Medicare part D plan to be able to cover a tier 5 drug in the coming year if I need it. Thanks @dadcue for that link to the NADF.