Flareups, Prednisone, Tapering

@susanew, My PMR has been in remission now for about a little over 6 years but I still feel some stiffness and minor aches and pains in the morning. It's nothing that I can't live with and it gets better after stretching and exercising some. I also have degenerative disc disease along with arthritis so I'm sure that's responsible for a lot of the aches and pains. I've had PMR twice and the first time it took me 3 and half years to taper off while going back and forth between 1 mg and 1/2 mg until I could finally stop taking it and my pain was still below the threshold I could live with - 2 or less on a scale of 1 to 10. My second time with PMR 6 years after tapering off the first time was much easier and only took me 1 and half years to get off of prednisone. I think I owe most of that because I made lifestyle changes after my first round with PMR and tried to eliminate most sugar and inflammatory foods. Hoping you find some answers. Do you keep a daily symptom/pain level log along with your prednisone dosage? That really helped me figure out how to manage the symptoms and get off quicker.

you dont say how far along this journey you are but like John mentioned the longer you have been on steroids the more difficult the taper can become. I have been off two years and I got stuck at about 5mg. I gave it a day or two and then went back to 5mg. A month later I dropped to 2.5mg and pain was manageable. One month later I just stopped. I had only been on for 6 months. It took about 3 months to feel normal. Now two years later I still have some aches and pains. It does seem to most of us that PMR sort of uncovered any other hidden gems in our body. PMR can last anywhere from 1-2 yrs so the risk of trying to taper is that the disease may not be gone. Regardless of what your blood tests show. The pain of low cortisol is almost identical to PMR pain. The flare can cause your PMR to come back. At 1mg your body is producing some cortisol so you should be able to stop. Just go slow and you will have discomfort but OTC pain killers can help at this point. Google prednisone and cortisol. Tons of reading on what your body is going through.

I have been diagnosed with hypogammaglobulinemia 18 years ago, but have been on IVIG monthly doing well. Five years ago, I was diagnosed with Polymyalgia Rheumatica and have been on prednisone trying to taper down, but not going much beyond 10 mg per day. After a virus in the beginning of June, I now have Guillian Barre Syndrome. My prednisone was increased to 15 mg per day. My PCP is tapering me for one week at 12.5 then going to 10. My feet are on fire; I have soaked for 15 minutes and rolled on Nervive. It is not working well. My hands healed after 4 IVIG treatments in a row, but feet aren’t.

My experience was the same. Tapering off Prednisone is uncomfortable and painful even when PMR isn't active.

It is very easy to mistake Prednisone withdrawal symptoms for PMR. If you are having withdrawal symptoms your body should adjust to the lower dose of Prednisone after a few days. In the meantime it is uncomfortable but the pain is not as bad as PMR pain. "Niggles" of pain is not a good reason to increase your Prednisone dose. Unfortunately, withdrawal symptoms if they get worse, are treated by increasing your Prednisone dose by 1 mg or 2 mg. A PMR flare might need a bigger increase in dose but that is only when the pain continues to get worse and gets more severe.

I think withdrawal symptoms are usually felt around the 7 mg dose of Prednisone. That is when you probably need to wait and see what happens. You can experience more withdrawal symptoms with every subsequent decrease in your prednisone dose so tapering gets slower and slower if you don't have a PMR flare first.

There is a tipping point when your body just doesn't have enough cortisol from the adrenal glands to offset the decrease in synthetic cortisol from Prednisone. When this happens, the body lacks the ability to regulate inflammation. More stress of any kind be it physical, mental or due to an infection may trigger another flare of PMR or something much worse.

Secondary adrenal insufficiency from long term prednisone use is another beast to slay. It can take a year or longer for adrenal function to improve depending on how long you have been on Prednisone. Sometimes adrenal insufficiency is permanent. I was just lucky my adrenal insufficiency wasn't permanent even though I was on Prednisone for 12 years. In most cases adrenal function will improve as long as you can stay on a lower dose of Prednisone. Adrenal insufficiency is also painful and characterized by overwhelming fatigue.

It took me almost a year to taper from 3 mg to zero simply because my cortisol level was too low. My endocrinologist could only tell me to wait until my cortisol level improved. She said I shouldn't even attempt to taper any lower than 3 mg until my cortisol level increased. As far as I know waiting and checking a cortisol level periodically is the only way to know when your adrenals are able to produce adequate amounts of cortisol again. Waiting that long on 3 mg of Prednisone or less was very difficult for me to do. My endocrinologist wasn't optimistic that my adrenal function would ever improve since I took Prednisone for 12 years.

I think the only reason I didn't have a PMR flare was because I was on a biologic that prevented the inflammation caused by PMR.

Incredibly helpful. I have had PMR for 3.6 yrs. 7mg is my sticking point. Tried Methotrexate to wean but too many S/E. I feel I am in remission for the last cpl of months...labs great, extreme fatigue much better, gait easy & no bilateral pain. I do have aches & stiffness like with arthritis so I think the cortisol adjustment theory is right on. I'm reducing 0.5mg every 2 wks & checking CRP & Sed monthly. Fingers crossed I can get off the Prednisone without a flare. Thanks to everyone for the advise & support.❤️

Good Luck! it is so difficult to know what to do.
I have been on 15 mg Prednisone for one month the blood tests are better but still having stiffness in right hand in the morning that usually passes by noon and also sometimes shoulders and neck pain in the mooning. not every day one day is ok another not soo...
Could not get in touch with my rheumatologist and went to my GP. he said I should up the Prednisone dose top 20 mg. 10 in the morning and 10 in the evening. Has anyone every tried this?
Frankly I did not want to increase mg but wanted to decrease as my rheumatologist had originally suggested. to 12.5 mg but since I cannot reach him I do not know what to do.
The aches and stiffness is not unbearable but really do not know how to go forward.
any feedback is apprecaited

You have not been on very long. Good news if your blood tests are better. I would say you can always go up. Going down is the hard part. Particularly the longer you are on steroids. I would try for the least dosage you can. If you are at 15mg try 10mg and 5mg. If this causes sleep issues then try your morning dose earlier. My Dr. left my taper up to me . So I did lots of experimenting. If you have less pain then try 5mg and 5mg. Find a comfortable spot. The Dr doesnt know where your comfortable. If you tell him lots of pain in the morning then mostly likely he will say ok take more prednisone.

I was hoping someone could explain to me how Actemra works as an IL 6 inhibitor…does it bind with what ever that causes inflammation there by not allowing an inflammatory response ? If it does that , does one need to not be in an inflammatory state for best results when a flare happens ? I wonder this because I’m curious if I should be taking enough prednisone to feel nothing while taking the Actemra …or just enough prednisone to get through the day ?

this would be just my take on it./ IL-6 has been found to be active in cases of PMR and GCA. Kevzara is the PMR drug and Actemra works better on GCA. The idea is that these two biologics can prevent an inflammatory response while trying to taper prednisone. Prednisone also fights inflammation but in addition it takes over control of your cortisol production. You might not have any inflammation from IL-6 but still have inflammation from trying to stop prednisone. Your pain may all be prednisone related. So the biologics will have no effect. The biologics can also take 6-10 weeks to start working. Prednisone is the only one that is controlling your cortisol. Here was a comment from the Actemra web site . /"When your body produces too much IL-6, it causes the immune system to attack healthy cells. This may contribute to the signs and symptoms of GCA. In other words, IL-6 is believed to be a key source of inflammation. ACTEMRA is designed to block IL-6 from activating the immune system to attack your healthy cells."/

The following link is a good place to start.
https://www.pmrandil6.com/il-6-and-pmr/
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IL-6 is a cytokine (protein molecule) that binds with receptors in cells and triggers inflammation.

Actemra is a protein molecule that is chemically similar to the IL-6 cytokine. An Actemra molecule is able to attach to the IL-6 receptors. When the Actemra molecule rather than the IL-6 cytokine attaches to the receptor it prevents the inflammatory response.

The reason for taking Actemra is to decrease the inflammation so that you can taper off Prednisone. With any luck you won't need Prednisone after Actemra is started. However, you still need to taper slowly off prednisone to give your adrenals a chance to recover from the effects Prednisone.

The exact mechanism of how Actemra works in the body isn't well understood. I have been on Actemra for 5 years. My response to Actemra has been nothing short of remarkable. My quality of life has dramatically improved compared to the 12 years I was on Prednisone to treat PMR.

PMR has been in remission thanks to Actemra. I have been completely off Prednisone for the past 3 years. I still do monthly infusions of Actemra.