Wow, did I have a headache yesterday...all day despite Tylenol? It felt like my head was tightening and I even hated to move my eyes. Unusual. Much better today, just a light headache. Also had 'meathook' leg cramps and I have a really good tolerance for pain.
I'm a GCA-er~~On January 12 my rheumy had me stop my 12 mg of prednisolone and go to 15mg of prednisone in anticipation of starting a taper on February 8. I did that with no problem. I was wondering if there could be a connection?
In 2019 I started with pred but was switched to prednisolone in a few months. He switched me because in the states you cannot get prednisolone in anything less than a 4 mg tablet.
Always value your input....maybe I just had a 'headache day'. Just wondering .
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Grammy80
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No - it is METHYL prednisolone (Medrol) you can't get in smaller than 4mg tabs. There is prednisone and prednisolone as well. So confusing. But 15mg prednisone is slightly less than 12mg medrol.
Yes, sorry, I skipped the methyl....I have been on methylprednisolone since the fall of 2019. I didn't realize there was a difference between methylprednisolone and prednisolone. What is the difference? Thanks as always~~💖
The name says it - the prednisolone molecule has what is called a methyl group attached to it (it comprises a carbon atom and 3 hydrogens, all organic chemistry stuff) and that changes some of the properties, supposedly making it more anti-inflammatory although I found that didn't happen, but the steroid adverse effects were worse!!! Horses for courses - or the awkward patient ...
I had a terrible time with prednisone. No relief from bad headache and neck pain. I was switched to Methylprednisolone and the difference is significant. I am now alternating 4mg and 2 mg daily as I hopefully continue tapering. I cut the 4 mg. in half for my 2 mg. dose. I am feeling better than I ever have since being diagnosed with GCA in 8/2019. I am talking Actemra injections every 2 weeks also. Marilyn you have had such a tough road. I wouldn't even consider giving you advice...just sharing my journey. Prednisone was a nightmare for me. Hoe you feel better soon.❤️
I'm so glad to hear how well you are doing and the success you are having with tapering. So happy for you. Got to love that Actemra.....or anything that works.
Prednisone didn't seem to impact my symptoms when I was initially diagnosed, plus I began having the type of aura I had over 40+ years ago when I had seizures. That would have been a real game-changer for me...I think my family wouldn't have trusted me at all to be alone. Keppra was added to my list of meds. That was when they put me in the hospital and gave me Medrol IV, then tablets, and monitored me while they adjusted the dose of Keppra. Happy to say it is almost 45 years now, seizure-free and the Medrol did lessen my symptoms. It is confusing, to say the least.
They didn't want to give me Actemra because of my history, but finally, that was what made the difference. My brain has been through a lot...maybe that is the reason the road is a tad bumpy. I had a stroke at 42, later a TIA, and two closed head injuries; one a car accident and the other a concrete floor at the end of a flight of stairs.
All in all, I could be a whole lot worse off for sure.💖
I wonder what that was? Possibly the change in your meds. as you can see, differing versions of a similar drug can cause problems. I would definitely report this to your doctor. They might have to think creatively about next steps with the tapering. I just realised that I haven’t had that awful eye pain for weeks. Perhaps Tocilizumab is doing its stuff, I’m never quite sure. I know you stopped it. Did that have any effect on how you are day to day?
Hi Jane..???? Sometimes I shrug my shoulders, but I agree; I'll call the doctor tomorrow to double-check. I was off the Actemra while they treated the staph infection in my leg. I was able to resume the injections in mid-December. When I went to the rheumy on January 12, he wanted me to do one more month of the Actemra before tapering while transitioning to Prednisone from Medrol.
I am also on Medrol and side effects have not been horrible. Medrol does come in 2 mg tablets here in South Carolina I am able to get it from CVS. They do have to order. Perhaps you could ask your Pharmacist?
Thanks...I have tried that but CVS says they can't get it? Two mg tablets would work fine for cutting. Actually, maybe I could get them from a CVS in South Carolina...mail order. I was content with the Medrol for sure. I'll look into it...thanks💖
I understood that Actemra helps with the tapering. My rheumatologist put me on every 2 weeks because my liver enzymes were elevated. I am on so much other meds that something else could be causing the elevation. Have not touched alcohol since 12/28/20 when we found out about the blood work results. Next appointment is Feb. 18. Will then see what's next. You are a walking miracle with all the health issues you have gone through! Be well and keep in touch. I have a soft spot in my heart for you. Our GCA journey began at the same time but you have had so many stumbling blocks in this short time.
You have a great spirit! I think the forum friends make this journey so much easier. So glad you are watching those lab reports. I have a friend in Maine who has PMR and GCA and just switched to a new rheumatologist because SHE had to keep asking for bloodwork. Fortunately, this fellow sounds like a good one. She also is on Actemra every two weeks. You take good care!!💖
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