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2 year struggle to get off prednisone still hard to get from 3 to 2mg
Was started on 20mg prednisone for PMR May 2022 significant pain relief but within. Few weeks awful insomnia and had a week of quite manic behaviour
Then breathlessness increased heart rate loss of muscle strength and low energy gp first thought I had long Covid after 7 months musculoskeletal physician said I had all the side effects of prednisone then seen by rheumatology service in public health beginning of 2023 who confirmed this and told had to persevere to lower dose I work as a social worker in mental health every time I reduced had to take time off work overwhelming fatigue nausea headache and pain it has taken me 22 months to get to 3mg my face is back to normal not so many headaches and less nausea but still fatigue and discomfort now trying 2mg alternating with 3mg to get down to 2 and then down to 1 and then none I had no idea this happened and have recently found this support group which has been helpful I long for the day I am off it Victoria B
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Thanks for your response prednisone certainly relieved the pain but the side effects were intolerable, where I live in Aotearoa New Zealand I wasn't offered an alternative and our primary care doctors are only allowed to prescribe prednisone all other drugs require a specialist, unfortunately none of them offered me an alternative but a physician friend said you can swap over to hydrocortisone from prednisone once you are down to 5 mg prednisone and it is apparently more tolerable but by the time my primary care doctor and I found this out I was down to 3 mg and prepared to persevere and have just gone down to 2mg the withdrawal symptoms aren't as bad as they used to be. I am really pleased the treatment your rheumatologist suggested is working well for you. Victoria B
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1 ReactionHydrocortisone was the suggestion I received when I got to 3 mg. It was just a suggestion and my endocrinologist said it would be okay to stay on prednisone if I wished.
I want to commend you for persevering. It was extremely difficult for me at those lower doses. I was so tempted to increase my prednisone dose when I was encouraged to do so. My endocrinologist supported me and said I could increase my dose if I 'felt the need.' She wanted to know about it preferably before I increased but she didn't require that I notify her first.
I hope you are getting the support you need. I had the advantage of being on an alternative medication that wasn't suppressing my adrenal function. That allowed me to taper off prednisone more easily but it was still extremely difficult.
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2 ReactionsThank you for your kind reply, I have coped quite well going from 3 to 2 mg so decided to just persevere hard to believe it is 2 years since I started it, I work in mental health and it was interesting that I saw a handful of patients over that time who were on prednisone for different reasons and struggling and because of my experience I was able to give them some support I otherwise wouldn't have been able to, I have been surprised by the lack of information about side effects and withdrawal symptoms and Mayo connect has been helpful in knowing that my experience isn't unusual. Victoria B
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2 ReactionsThanks for this link. I believe we all develop cancerous cells and infections but the immune cells do their best to keep it in check and clear the damage.
"My rheumatologist doesn't think my immune system will "forget" anytime soon what it has been attacking for many years.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4067599/
I wish someone would debunk this idea for me."
If these immune cells are involved in pmr, suppressing them would, it seems to me, only lead to other health issues.
You mention that when your Rheumatologist made application for the biologic it was advised "that all other alternatives had failed". Do you know what evidence was presented on the application to show that the other alternative drugs had failed ? Were there objective biomarkers that demonstrated drug failure or was it you telling the Rheumatologist that you still needed Prednisone to control symptoms? I am curious because i will probably be going down this path and its not clear to me what specific criteria have to be met for a PMR patient to be approved for biologic drugs (its likely to be fairly similar in the US and Australia)
At the time, Actemra (tocilizumab) was FDA approved for GCA but not PMR. My rheumatologist wanted me to try Actemra for PMR since he was reading the available research from the GIACTA trial.
https://www.nejm.org/doi/full/10.1056/NEJMoa1613849The way my rheumatologist asked me was, "IF he could get it approved, would I be willing to try Actemra?" He made it sound like it would be hard to get it approved but he would make the effort and submit the paperwork that was needed.
I was interested in trying any biologic but I wasn't too excited about Actemra simply because I had never heard of it. No biologic was FDA approved for PMR at the time. The request was made but it didn't seem likely to be approved. The FDA doesn't control what doctors prescribe but doctors must follow the current "standards of care" for treating patients. If a medication isn't FDA approved for a condition it is considered to be "experimental."
Insurance companies don't usually pay for experimental treatments. Hospitals also follow a medication formulary. For expensive medications doctors need to justify why they want to give the medication to the patient if it isn't FDA approved for the condition being treated. This is because the hospital won't be reimbursed for the cost of the medication. Also, if the treatment causes harm to the patient, there are liability issues.
Every hospital has their own protocols for this situation but doctors are required to give justification if their treatment doesn't follow current standards of care. I wasn't involved in the decision making but I read the documentation that was put in my medical records. That was where my rheumatologist made the assertion that all other alternatives were tried and had failed.
I personally think my rheumatologist embellished my case but technically he was correct. There was some kind of medical panel that decided to approve his request. The recommendation by the medical panel was to follow the guidelines for treating a patient who had GCA. Since Actemra was an FDA approved biologic for GCA, they concluded Actemra "might work for PMR." It was essentially a "trial of one" to give me Actemra --- that was in 2018.
Last year Kevzara was FDA approved for PMR.
“With the approval of Kevzara for polymyalgia rheumatica, patients now have an FDA-approved treatment to help offer relief from the disabling symptoms of this disease and long-term dependence on steroids.”
https://www.vasculitisfoundation.org/us-fda-approves-regeneron-sanofis-kevzara-to-treat-polymyalgia-rheumatica/#:~:text=Kevzara%20has%20been%20approved%20as,IL%2D6%2Dmediated%20signalling.Kevzara and Actemra block the IL-6 inflammation pathway that is implicated in both PMR and GCA. The criteria for allowing doctors to prescribe these biologics to treat PMR and GCA has now loosened considerably in the US since they are FDA approved. I think "long term dependence on steroids" is no longer applicable because many people seem to get Kevzara soon after being diagnosed with PMR.
Actemra still isn't FDA approved for PMR because the research seeking approval from the FDA hasn't been submitted. However, many people are being prescribed Actemra for GCA.
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4 ReactionsAre you talking about hydrocortisone cream?
Oral hydrocortisone, typically 15–25 mg daily, taken in divided doses is used for adrenal insufficiency.
Topical hydrocortisone cream is more for localized inflammation on areas of the skin.
Hydrocortisone is short acting so in theory, hydrocortisone tablets don't suppress adrenal function all day long like prednisone tablets do.
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2 ReactionsI used Dexamethasone. Medicare drug plan did cover. I am not sure if its similar to Rayos but it works quicker and lasts longer. Its about 5 to 6 times stronger than prednisone so you need to adjust the dosage accordingly. I had no trouble with tapering off. My PMR lasted about 6 months and I was off.
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4 ReactionsI just reread your question.
Simple answer ... yes my inflammation markers (CRP and ESR) were checked routinely. I don't recall any time when these biomarkers were not elevated. Prednisone decreased my biomarkers but rarely were they within the normal range. Actemra normalized my CRP and ESR. I was so surprised that I asked by rheumatologist if my CRP and ESR were "too low." These labs aren't reliable when a person is taking Actemra but my symptoms were also nil.
I still recall the day when I was on 30 mg of Prednisone. My rheumatologist was surprised when my CRP and ESR were STILL elevated and said I should take 35 mg. On 35 mg, my ESR and CRP were "mildly elevated." Multiple NSAIDs and DMARDs in addition to prednisone were tried but mildly elevated was the best I could ever achieve unless my prednisone dose was very high.
My biomarkers were used in conjunction with my symptoms. I would tell my rheumatologist when I experienced more pain when I tried to taper Prednisone lower. I think she believed me but she would check my inflammation markers just to see if my inflammation markers correlated with my symptoms. My CRP and ESR always correlated with my symptoms so my rheumatologist would say increasing my prednisone dose was warranted.
Actemra was approved on the basis that nothing else worked well. The other criteria was that I was "unable to taper off prednisone." All other alternatives including methotrexated had failed to normalized my inflammation markers but also for other reasons like infections and/or side effects.
Sometimes the failure of a medication was because of my intolerance for the medication. For example, methotrexate was working to control my PMR symptoms. I took methotrexate for more than a year. However, methotrextate over time increased my liver enzymes and was making me sick.
Does that answer your question any better?
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