Can you split Prednisone dose for GCA?

Interesting development today. I called the doctor’s office and told a nurse that what the doctor has asked us to do - let him develop a headache, go get labs while I call the doctor or if it happens outside of business hours to go to the ER - is just not working. And that her treatment plan was not sustainable. This nurse took the time to really listen. I explained he’s on 80 mg and that his doc (rheumatologist) said he must take it all at once. I explained that we have gone around and around about this issue and she just won’t budge.

The nurse took the initiative and spoke with the Chief of Rheumatology who said 80 mg is too high a dose to take all at once and that we should split the dose. She said she is fine with us splitting it any way that works to eliminate the headaches.

Wow! I think I will take the advise of a Chief of Rheumatology over our current doctor who initially told me she thought I was wrong and that she didn’t think he had GCA. I had to fight to get the biopsy which came back positive. Then he ends up being resistant to treatment, hospitalize and with 1200 mg IV infusions of methylprednisolone.

It’s been a ride. He first had PMR diagnosed back in May.

How is the Actemra working for you? Did it help to reduce prednisone? My husband is asking if you had any side effects from the Actemra. Also, he’s on 80 mg right now of the prednisone and we are contemplating having him take 60 mg in the morning and 20 mg in the evening. That’s my recommendation. He would prefer to do 50 mg in the morning and 30 mg in the evening. Yesterday he took 80 mg in the morning before they told us we could split it. He took an additional 20 mg in the evening and did great. He woke up headache free. And in much better spirits. The Chief of Rheumatology said 40/40 or to play with it and find what works so long as it’s 80 mg per 24 hour period.

I’m so glad you did that and shared your story. Your husband is lucky to have you!

There comes a time you just need to do what you feel is best for your body, and I’m glad you were able to find someone to really listen and look into it more deeply.

I don’t have experience with a split dose for GCA, but this is a great group and hopefully someone else will chime in.

From my experience, a split dose is less common and it’s not mentioned as frequently in the literature or proposed first, but can be done for PMR if you’re having side effects. That’s what happened to my dad, but it turned out a split dose was worse for him, go figure. I didn’t find any data on GCA specifically.

Were you able to ask the doctor about your concerns and why they didn’t want to split the dose? If it’s a safety or an “evidence shows” reason, that would make sense, but I’m wondering if it’s just not something the doctor is used to which led them to give a flat out “no.” My dad and I both have significant medication sensitivities and need to adjust doses and tapering/titrating schedules often, but just for this. But we’ve found some physicians are simply not flexible. If it’s a gray area, hasn’t been proven ineffective or unsafe, and makes you and your husband more comfortable, I don’t see why it would be a problem.

Hopefully someone else will chime in, and wishing you all the best.

I like the sound of a 50/30 split. I'm partial to 2/3 of the dose in the morning and 1/3 of the dose in the evening. That would be closer to a 55/25 split but it doesn't need to be precise.

I'm impressed with what that Chief of Rheumatology said ... "find what works so long as it's 80 mg per 24 hour period."

When you taper to 60 mg daily, the split dose can be 40/20. If all goes well you can taper in 3 mg increments with the morning dose decreased by 2 mg and the evening dose decreased by 1 mg. The 2 to 1 ratio is maintained that way. 38/19 ... 36/18 ...34/17 ... 32/16 ... 30/15 and so on. Fun with numbers!

It helps to have a good supply of 1 mg tablets! Actually 20 mg, 10 mg and 5 mg tablets are all good to have. My doctors would order all the different strengths of tablets and the number of tablets to be dispensed. My instructions were "take as directed" without spelling it out. The pharmacist dispensing the prednisone will appreciate it being ordered that way. This depends on your doctor trusting you to take prednisone as directed and not going rogue!

When you get below 10 mg, I would consider going back to taking the entire dose in the morning. The issue is about adrenal suppression when a person is on long term prednisone. Supposedly taking the entire dose in morning reduces that risk of adrenal insufficiency. At higher doses above 10 mg daily, the adrenals will be suppressed whether you take the entire dose in the morning or split the dose.

I have never tapered for GCA. However, I have followed these guidelines many, many times for uveitis which can also cause vision loss. How fast one tapers depends on what is being treated. There is no single best way to taper prednisone!

Thank you @emo. I took your advice and tried to find out if it was a safety or evidence reason and got the run-around. My question wasn't answered. I think it's her having one flat answer and maybe she has her reasons. However, yesterday I spoke with a nurse after getting so frustrated with so many aspects of what's happened since he developed GCA. It's been a ride. I finally decided to ask for a 2nd opinion and the rheumatology department seemed to take offense to that. I was told they would not approve the request because it was outside our insurance, however, the doctor we want takes our insurance. Regardless, they knew I was at my wit's end with no good solutions. Basically we were being told by his doctor if he gets a headache during business hours to go to the lab for CRP & ESR levels while I call the doctor. Well, calling the doctor is no easy undertaking and takes time. If after hours, go to the ER. With an upcoming weekend I was frustrated and told the nurse that we need a better treatment plan going forward and that I found this unsustainable. Since when he takes the 80 mg all at once he will wake up with a headache around 6 am and under her orders we'd be in the ER every day. We felt there had to be another solution. She really listened and said she would talk to the doctor who was available, that ours was out until next week. It so happened she was able to discuss it with the Chief of Rheumatology who came back with a completely different approach to dosing, one we feel is appropriate for my husband. She said take 80 mg within 24 hours. We can split it 40 mg in AM 40 mg in PM or any way that works for him, so long as he gets the full 80 mg within the 24 hours. She also completely contradicted our doctor who said to take the full 80 mg in the morning when she said 80 mg is too high a dose to take all at once. My Lord this has been frustrating. We did it our way and he woke up pain free and is one happy man today. Relieved for sure.

I have GCA. I split my prednisone dose after the first week, with my Doctor saying either daily or splitting is okay so long as the prescribed dosage is taken daily.

I began at 40 mg and have now tapered down to 10 mg daily plus Actemra once weekly.

Thank you @emo. I took your advice and tried to find out if it was a safety or evidence reason and got the run-around. My question wasn't answered. I think it's her having one flat answer and maybe she has her reasons. However, yesterday I spoke with a nurse after getting so frustrated with so many aspects of what's happened since he developed GCA. It's been a ride. I finally decided to ask for a 2nd opinion and the rheumatology department seemed to take offense to that. I was told they would not approve the request because it was outside our insurance, however, the doctor we want takes our insurance. Regardless, they knew I was at my wit's end with no good solutions. Basically we were being told by his doctor if he gets a headache during business hours to go to the lab for CRP & ESR levels while I call the doctor. Well, calling the doctor is no easy undertaking and takes time. If after hours, go to the ER. With an upcoming weekend I was frustrated and told the nurse that we need a better treatment plan going forward and that I found this unsustainable. Since when he takes the 80 mg all at once he will wake up with a headache around 6 am and under her orders we'd be in the ER every day. We felt there had to be another solution. She really listened and said she would talk to the doctor who was available, that ours was out until next week. It so happened she was able to discuss it with the Chief of Rheumatology who came back with a completely different approach to dosing, one we feel is appropriate for my husband. She said take 80 mg within 24 hours. We can split it 40 mg in AM 40 mg in PM or any way that works for him, so long as he gets the full 80 mg within the 24 hours. She also completely contradicted our doctor who said to take the full 80 mg in the morning when she said 80 mg is too high a dose to take all at once. My Lord this has been frustrating. We did it our way and he woke up pain free and is one happy man today. Relieved for sure.

Sheesh, that’s a red flag to be asking why they’re recommending one way over another and then not get an answer!

I’m glad the new chief-of-radiology-approved plan is working so far. Hopefully that holds and it’ll be smoother sailing for you both moving forward.

How is the Actemra working for you? Did it help to reduce prednisone? My husband is asking if you had any side effects from the Actemra. Also, he’s on 80 mg right now of the prednisone and we are contemplating having him take 60 mg in the morning and 20 mg in the evening. That’s my recommendation. He would prefer to do 50 mg in the morning and 30 mg in the evening. Yesterday he took 80 mg in the morning before they told us we could split it. He took an additional 20 mg in the evening and did great. He woke up headache free. And in much better spirits. The Chief of Rheumatology said 40/40 or to play with it and find what works so long as it’s 80 mg per 24 hour period.