Has anyone "self-tapered" (increase or decrease prednisone)

@lashley75 do you get your inflammatory markers tested with each doctor visit? I would encourage you to know your numbers and consider going on 5mg for 4-6 weeks then taper a little slower if they are high. It is very possible that you still have an active PRM flare and once you get your inflammatory numbers low it is mostly about living a lifestyle that does not contribute to raising your numbers. Things like exercise, low refined sugar, eating fewer refined foods, eliminate fast foods, taking extra time to heal from the flu, etc all help to keep PMR at bay.
I actually developed an allergy to Tylenol (hives and itching - very rare) since my PMR diagnosis by taking too much over several years. Please be careful.

Thank you. Yes, I had my blood tested a week after tapering off steriods. 8.5.

But no doubt higher now, pain has increased.

I only take two Tylenol in the late morning a one a night.

I am trying the below. Supplements come in tomorrow.:

Hyaluronic acid (HA), also known as hyaluronan, is an anionic glycosaminoglycan widely distributed throughout various tissues of the human body. It stands out from other glycosaminoglycans as it lacks sulfation and can attain considerable size: the average human synovial HA molecule weighs about 7 million Dalton (Da), equivalent to roughly 20,000 disaccharide monomers; although some sources report a lower range of 3-4 million Da. In recent years, HA has garnered significant attention in the field of rheumatology due to its involvement in joint lubrication, cartilage maintenance, and modulation of inflammatory and/or immune responses.
This review aims to provide a comprehensive overview of HA's involvement in rheumatology, covering its physiology, pharmacology, therapeutic applications, and potential future directions for enhancing patient outcomes. Nevertheless, the use of HA therapy in rheumatology remains controversial with conflicting evidence regarding its efficacy and safety. In conclusion, HA represents a promising therapeutic option to improve joint function and alleviate inflammation and pain.
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1. Introduction
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Hyaluronic acid (HA) plays an important role in a wide range of medical physiological and pathological conditions: Notably, it finds application in dermatology, ophthalmology, cosmetic medicine, and rheumatology [1.2,31. Its significance extends to wound healing, granulation, and cell migration [4]. However, the efficacy of HA in rheumatology remains a subject of controversy at

Yes, I've controlled my reduction of prednisone. My first 3 years of PMR were a mess, mainly because I had 2 different rheumatologists that were hell bent that I should be off prednisone inside of 2 years time. The fast reduction of prednisone dose lead me to have 3 nasty flare ups and after almost 3 years I was back up to 20 mg to control the pain. Like you, I learned from others that it wasn't a case of constantly reducing the dose but doing so as your body allowed. Without giving the whole tale, after 8 years I've just gotten to zero dose one week ago. No guarantee that the PMR is totally gone but I'm hoping. Once I got down below 4mg, my 4th rheumy made the comment that he had no issue if I was on a light dose of prednisone forever, as the side effects at that level are minimal. The dose needed is the dose that's effective. If you get too low, your body will let you know and one has to increase the dose so you can function with minimal discomfort. We live with a demon in our bodies and have to keep it sedated with prednisone so we can have a decent quality of life. Hopefully we get to zero dose but ultimately it's whatever keeps us functioning with minimal or no pain. That's really what it's all about.

I too am determined to get off steroids asap. Reducing at 0.25mg per week and down to 6mg Pred after a very bumpy 9 months. Hydroxychloroquine is helping me at present, hanging out for the results of the latest blood test to see if the results confirm my feeling that the PMR is better controlled. Like you, i still have pain that has me reaching for strong Paracetamol but its not stopping me from moving. I dont think my blood markers will get back into normal range due to my Osteoarthritis but as long as my CRP is going down and not up, i will continue to press on to zero Prednisone.

@lashley7
I understand you not wanting to live with the possible side effects of steroids. But I hope you will watch very closely for any new symptoms. Most specifically, if you develop some of the symptoms I'll list below it could mean your disease has moved to GCA (Giant Cell Arteritis.) Which can be life-threatening, can cause strokes, aneurisms, blindness, heart attacks etc.

GCA is an inflammation of the lining for the arteries, most often in the upper part of your body (head) but can move to larger arteries in the body. One way it was described to me was people get hardening of the arteries and get into trouble when an artery is blocked. The same thing happens when you have GCA only the artery has the ability to close (with too much inflammation) having the same effect. Which then can lead to those life-threatening consequences I've mentioned.

It is awful and considered an emergency. I knew about GCA when my husband developed PMR but just hoped and prayed he wouldn't get it. I didn't read much about it because it was frightening and I figured no point scaring myself with something he only had a 15-20% chance of getting. Now I wish I had but hindsight is 20/20.

Then as he was tapering off Prednisone (PMR diagnosed May 2023, put on 30 mg prednisone, had tapered to 12.5 mg by February 2024 with doctor's recommendations and weekly labs to check inflammation levels.)

In February of 2024 he developed these symptoms, all consistent with GCA diagnosis:

- Persistent, severe head pain, usually in your temple area
- Scalp tenderness
- Jaw pain when you chew or open your mouth wide
- Fever (he had low-grade fever on and off)
- Fatigue
- Unintended weight loss

Two additional symptoms listed on the Mayo Clinic website are 1. Vision loss or double vision, particularly in people who also have jaw pain and 2. Sudden, permanent loss of vision in one eye.

Very fortunately his eyes have not been affected. Last week I heard him talking to his nurse and telling her he was having a little blurry vision. Hopefully it's nothing. We will have his eyes checked ASAP.

With these illnesses, both PMR and GCA, we have learned to not let things go for very long. If you notice a new symptom that persists or gets worse over a few days, notify your doctor. And if you develop any of those for GCA contact your doctor immediately. If you are unsuccessful at someone listening to your concerns or can't get an appointment head to the ER. GCA is considered a medical emergency and should be treated that way.

I don't tell you all of this to scare you. My husband could have lost his vision or even his life. His rheumatologist wasn't on board when I described his new symptoms in February. I told her I suspected GCA, though hoped not, and she said she didn't believe he had it. She wanted to increase Prednisone a little as his inflammation levels were rising. I told her I felt we should get the arterial biopsy done and she didn't agree. After a few phone calls to her nurses, as his symptoms worsened, and finally the doc called back. I explained how bad things were and she finally agreed to the biopsy, making sure to let me know she was doing it because of my insistence. I felt horrible, having my husband go through this, in the event I was wrong. But what if I was right?

Sure enough, not only did he have GCA, in the end she admitted he had the worse case she'd ever seen. She told us if he developed another headache while awaiting the results of the biopsy, to go to the ER. That night we landed in the ER and the ER doc said he was not being treated properly for the severity of his condition (his levels had been rising quickly) - she put him on a 1200 mg infusion of prednisolone (3 infusions in 3 days). I was scared. I thought 60 mg of Prednisone was high. I didn't know people could take this much.

Those infusions likely saved his life. Once they were over, he went on 80 mg of Prednisone. Once we were out of the ER his rheumatologis would not allow us to split the dose, saying with GCA you absolutely cannot split the dose. Follow this closely. When we gave one single dose his headaches returned in the middle of the night. Headaches are dangerous with GCA. In an effort to not land once again in the ER I made several calls to her office and finally got a really good nurse who listened and cared enough to run his story by the Chief of Rheumatology who told her that it is not safe to take 80 mg all at once and that the dose should be split. We were furious! We asked if it would be possible to schedule an appointment with the Chief of Rheumatology, thinking it was a big ask. She called me back and said the doctor agreed to come to our town to see my husband. Once we saw her she agreed to be his new doctor and things have gone more smoothly since.

There are a few takeaways that I think are really important. First, if you are not happy with the treatment you're getting from your doctor, find a better one. Keep looking until you find one you feel good about, who listens, who cares. Then, be sure you're getting your inflammation levels tested frequently. If they go too high you put yourself at risk. The last thing I want is for you to get GCA. Good chances are you won't.

As far as PMR, I'm not sure it's wise to self-taper. I haven't yet read what others are saying but I think it's important to remain under the care of a doctor and be sure inflammation isn't getting out of control. And listen to your body. If you get any of those GCA symptoms I would not hesitate to call your doctor, as I said, or go to the ER. If your inflammation levels rise again and your PMR worsens you could be forced to start all over again with higher doses of prednisone. I think it's better to follow tapering with a doctor who is testing you often.

That's the best advice I can give. Here's a link to the Mayo Clinic website on GCA. My doctor said Mayo Clinic and Cleveland Clinic are reliable sources, so those are my main go-to's. Also the rheumatology website (can't think of what it's called at the moment.)
https://www.mayoclinic.org/diseases-conditions/giant-cell-arteritis/symptoms-causes/syc-20372758
Good luck and I hope you're doing better.

@raven1955
I find your post very helpful. I am complete agreement that the main thing is keeping this thing under control because if you don't, you get back to square one and have to start the process all over again. My husband has PMR and then got GCA so we've been there. We are now dealing with the GCA he developed this February. He's had PMR since May 2023. He had tapered from 30 mg down to 12.5 mg when he developed new and troubling symptoms which ended up being Giant Cell Arteritis (GCA.) I shared what happened on this thread if you're interested.

@joycj
You and I are in the similar situation. I'm here for my husband who developed PMR in May 2023 and Giant Cell Arteritis in February 2024.

I've posted some info on this thread if you're interested, as well as quite a few posts in the PMR topic.

Good for you advocating for him! Mine is 75 and this was the first illness he'd ever really had, other than normal colds etc. It's been a nightmare for us.

My recommendation to you would be to find another rheumatologist. We did and it was the best thing we've done. Getting off Prednisone too soon and too quickly could cause the PMR to flare and put him back on higher doses of prednisone. I've heard and read that people can stay on low-dose prednisone for years to life, if needed. I would also recommend when you get a new doctor, that you ask that he be tested once every two weeks for his inflammation levels. If they go up at all, they should OK increasing the prednisone a little to try to keep it under control.

Our doctor didn't do that and he ended up with giant cell arteritis (GCA) which is a whole lot worse than PMR. I would take no chances. My husband's situation is so much worse after developing GCA, I wish I'd known then what I know now. I blame his first rheumatologist for not listening to us when we first thought he was developing GCA and delaying a biopsy and a diagnosis.

Thanks for sharing your husband's story. Unfortunately it's a tale I've heard far too many times over my years of reading and learning from this site and HealthUnlocked's site. It's my own opinion (and others will disagree) that many doctors and rheumys focus on curing patients quickly, versus controlling something like PMR and GCA over a longer period of time. One doesn't cure our demon quickly - we keep him under control until he hopefully fades away. My first rheumy said I'd be cured in 6-12 months. After starting at 20 mg and 1 huge flare later I was a year into treatment and taking 30mg. Rheumy #2 said it would take 2 years and proceeded to reduce my dose too quickly until I blew up again at 12.5 mg and 15 mg. At this point I discovered the HealthUnlocked site and learned to be my own advocate besides learning so much from others in this situation. Rheumy #3 was determined to prove I had rheumatoid arthritis and after 9 months of fighting with him, we parted ways. Rheumy #4 was the best one and got me a long ways over years before he retired. Rheumy #5 was around about 1 year and moved. Currently my health system in rural northern Minnesota doesn't have a rheumy but I'm okay with that - He stocked me up with prednisone prescriptions before he moved..lol. Now I'm hopeful I won't need any pred in the future but won't hesitate if I feel the demon coming back. My timeline is long at 8 years but that is partially due to my continuing to work a full time job throughout. I didn't do myself any favors - a tough balancing act. There are many good doctors and rheumies but the ones that are only looking at fast cures or are working from outdated studies can and do cause more problems for us if we don't fight back like you have. I applaud you.

When I was a young boy living in farm country in the 50's & 60's I can recall farmers who suddenly weren't able to handle working the farm anymore and definitely recall a guy who suddenly lost his vision. Makes me wonder if they had PMR and/or GCA.