I’m so grateful that this community is here -- yes, I joined!
I’m working with a doctor (who I don’t know) who diagnosed me in 20 minutes… she promptly responds to me… she researches/teaches listening to young doctors at the medical school of the University of Pennsylvania. She did follow up tests (Rheumatoid factor assay and a Cyclic Citrul Peptide Ab igg) after increasing dosage to 30mg to make sure I’m not cooking something else – also warned me of GCA. It’s early days and I’m semi-optimist about her after reading the stories of misdiagnosis or no diagnosis on the website. I think she will trust me to manage this disease but I, in turn, rely on you to share your thoughts with me. I’m reading everything on the site, but it is like drinking from a fire hose.
So… the today’s big question is “How long do I remain on initial dose that cleared my pain?”
I’m on Day 22 of oral uncoated prednisone, and Day 12 of a dosage of 30mg (split am & pm to cover pain) as of July 1. Started at 15mg but lower dosages gave minimal relief from crippling pain. The 30mg dosage gave almost immediate relief of 75% of pain/stiffness and yesterday morning I realized that I have almost NO PAIN. However, I do have immense FATIGUE, alternating with a sense of my nervous system zipping around while my body is exhausted. I’m careful not to overdue on stress and activity. Lots of meditation and Reiki.
So… I have no idea what this means (the fatigue especially) with regard to how well the prednisone is cleaning out my stash of PMR inflammation…
and most important how long do I want to stay on the initial dose of 30mg before beginning to taper and find the lowest dose that keeps PMR pain/stiffness at bay. I’m also concerned about becoming physically dependent on the dosage to keep pain away. As you know, the pain is a nightmare.
Many thanks. Dana
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Chicama
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I think as a rule if thumb I normally go for around 4 weeks when I am reducing. As DorsetLady says as you are on quite a high dose at 30mg. If you are feeling OK on 30mg I should ask your doctor if it is OK to reduce again. Perhaps give it a week to make certain.
Were your sed rate and CRP raised at diagnosis? If so they should provide a means of monitoring this stage - they should be falling to normal range. You can take it that most of the inflammation is gone when they are low and stable. But you may not need to stay on 30mg as long as that takes - 20mg and above are usually enough to keep dealing with it. If the symptoms are improved and stable it is fair enough to try reducing, at this stage 5mg might be OK but 2.5mg is maybe better.
I was diagnosed with PMR in late May 2021 after symptoms coming on suddenly at the beginning of January 2021. Because of some of my original symptoms, the GP was concerned about GCA, so he started me out at 40 mg for 2 weeks. Most of the pain was gone within hours, with the exception of my upper arms which took a few days to go away. (*For more about my PMR background, I will fill out my bio in the next day or so)
I had a phone consultation with the GP every two weeks to discuss my symptoms and the CRP results. The GP was interested in the CRP levels, but mainly went with my symptoms. I was told that if the pain came back, to go up to the previous dosage.
I was referred to a rheumatologist by my request, which I kind of regret. I will be posting before my 4th rheumy appt, which is at the end of next week...not looking forward to it. My tapering hit a few snags along the way, but definitely once I had my first appt with the rheumy at the end of November 2021. I'm grateful that I finally found this website, as I have changed my taper to be more slow and gradual and to know that symptoms can be one of 3 things when getting into single digits of prednisone dosage. (I found PMRGCAuk after my 3rd rheumatologist appt in late April 2022, which was a terrible, stressful experience!!!)
Below is my tapering schedule from May 21, 2021 until now. In regards to your question, I never had any issues with tapering until I hit 7.5 mg.
40 mg - 14 days
30 mg - 7 days
25 mg - 7 days
20 mg - 15 days
15 mg - 13 days
10 mg - 12 days
7.5 mg - 28 days (at end of 28 days, started feeling pain)
10 mg - 28 days (pain gone right away after increase)
8.5 mg - 20 days
7.5 mg - 10 days
7 mg - 1 day (not sure why only 1 day)
6 mg - 16 days
5 mg - 32 days (rheumy appt at day 21)
4.5 mg - 3 days (pain after 3rd day)
5 mg - 1 day
6 mg - 2 days
7.5 mg - 22 days (2nd rheumy appt at day 20)
7 mg - 14 days
6.5 mg - 19 days (pain at 19th day)
7.5 mg - 1 day
10 mg - 2 days
11 mg - 14 days
10 mg - 31 days
9.5-9 mg - 30 days (3rd rheumy appt day 11; found PMRGCAuk after this!)
9-8.5 mg - 20 days (started getting neck pain; took Tylenol for several days with no relief)
From the end of May until the end of December 2021, the taper was going along well, except for the one blip at 7.5 mg at the end of August. Things all seemed to go sideways when I had my first rheumy appt when I was at 5 mg at the end of November. The GP would probably have kept me at 5 mg for a lot longer than the rheumy wanted. She told me to go down by 1 mg every month. When I asked her what to do if I felt any pain, she said "call me". This first appt was at the end of November, so when the pain started, when I called, she was off for several weeks for the holidays. I did up the prednisone from 4.5 mg to 7.5 mg and it did the trick. When I finally spoke with her in January 2022, she wanted me to go down by 0.5 mg every two weeks. I got to 6.5 mg and then had to go back up to 10 mg before the pain was gone. When I had the 3rd appt with her in April, she was not happy that I had gone up and basically accused me of being hooked on Prednisone. She said that I must be sensitive to it - that I "love it" and it was like cocaine to me. I told her I wanted off of Pred and I never got a high from it - it just took away the pain. She said I might say that I want off of it, but my behaviour said otherwise "you behave like you want it." She told me to take acetaminophen or ibuprofen for the pain, which had never worked in the past. However, I guess what she was telling me was that she thought the pain was steroid withdrawal. She doesn't seem to consider the possibility of a flare. We did discuss the adrenal glands and she used the analogy of pred being money, and the adrenal glands not working if there is too much money, but will go to work if they are depleted. I've tried to take the positives from this phone appt (we've never met in person and have only had phone appts), but it was a terrible meeting and I got off the phone being stressed out and in tears.
(*Note - I'm just working on my bio and will upload it soon. Just for a bit of background, I was 56 years old when I started getting symptoms and was diagnosed 5 months later. I'm now 57 - it's been almost 14 months since diagnosis. The rheumy did say to me that I'm too young to be on Prednisone. But without it, I don't know where I'd be! What she said doesn't even make sense regarding age).
"she was not happy that I had gone up and basically accused me of being hooked on Prednisone. She said that I must be sensitive to it - that I "love it" and it was like cocaine to me"
Where the hell do they develop these ideas from???? I hope she gets PMR one days and discovers WHY we want the pred. You aren't heading relentlessly to zero, you are looking for the lowest dose that manages the symptoms as well as the starting dose did and pred is your painkiller - nothing else works for PMR. PMR is very unlikely to have gone after 14 months - about 1 in 5 are thought to be off pred in a year, about 1 in 3 by 2 years. PMR does NOT go in 2 years - that is a myth. As long as it is happening, going below the dose you NEED (not want) will just result in a return of symptoms.
I was 51 when PMR started, 57 when diagnosed and allowed to take pred. It was a miracle - 15mg and 6 hours later I could move normally. At nearly 70 it is still there, a very small number of people have a long relapsing version. And I have needed above 10mg most of that time, had a year or so at 5mg before a massive relapse and 15mg plus for the whole of the Covid time as I was a sole carer and had to be able to function. Doctors are terrified of using steroids - they think everyone develops all of the potential adverse effects. Most can be mitigated or avoided altogether when you know how though. Our collective experiences seem to suggest that messing about with too fast tapers and yoyoing results in even more problems reducing afterwards.
A reduction rate of 1mg a month below 10mg is the maximum - and trying to go faster is predictive of flare. The lower you get - the slower you need to go both to avoid flaring by overshooting but also to allow the adrenal glands to recover in their own time without you feeling utterly awful. Nothing to do with addiction and likening it to cocaine is absolutely disgusting.
And you know - you CAN say no and return to the GP's care.
She did threaten me with returning me to the GP, although I don't have a family doctor and have been working with different GPs at a walk-in clinic. It's so hard to get an appt now with the clinic (phone or otherwise), due to Covid, but mainly because of the shortage of family doctors. However, I have been lucky to access a service in which I can talk to a GP via videoconference. I had a lovely 1-hour appointment with a young doctor and she updated my prednisone prescription and she agreed to meet with me monthly to talk about my pred taper.
I am on sick leave from work and I guess I'm worried that the insurance company might get a report from the rheumy about me not following her taper and of being a "bad" patient! I think I'll meet with her next week and see if I can part with her amicably. She is in my head - I have been thinking about this appt and about what I will say, how I will respond to what she says to me...too stressful and not good for my condition!
I'm so grateful for this forum and for you, PMRpro, and the others who I've learned from over the last few months.
I would say she has well overstepped the mark with her comments. Worth actually telling her that. Personal, prejudiced and unsubstantiated as well as offensive. If you need a rheumy for insurance reasons you would be better off with another if she won't listen to reason. Explain the role stress plays in this condition and how much she is impacting negatively on yours. If she refuses to alter haer approach just get rid of her and go direct to your insurance company if necessary with a concise summary if there are problems. I hope you improve. Sounds like too fast taper , flare and you need to be slightly higher for a period till stable. Good luck
I also got the "we all feel much better if we take prednisolone" from the first Rheumy 3 years ago. First she actually said : "I wish I could give you one shot of pred. and if you get miracuously better we know it is PMR" - later she changed her mind. I really do not know what they are thinking!
And why COULDN'T she give you one shot of pred? Though a week or so of oral pred that induces a speedy improvement is also a building brick in the wall of evidence - though neither is 100% proof. Other things respond to pred too,
I wonder if a "chat" with PMRCanada might be useful - she had a similar experience with rheumies at the start of her PMR journey and she might have some relevant advice.
I would take her up on her threat especially if you have found a GP that can manage and will work with you not against you as she is! Cheaper on the wallet too, no consultant co-pays!The one piece you might do is leave her with a couple good articles on PMR (tho I doubt she’d read them). Maybe if they were from a rheumatology journal?
Outrageous and inappropriate comment. Try not to worry about her taking it further, she should be worrying about you making a complaint.
If you are seeing that "doctor" again, obviously go in a positive way but I suggest you take someone with you for support and that you both make notes. Be clear that you are taking pred for the pain and if she insists on calling it a medication addiction ask her to justify this statement.
Are you in Candada? Have you got Canadian guidelines for tapering which can be referred to? Presume they acknowledge flares.
There have been too many doctors making such claims on this forum and it reflects both sexism and ageism.
Hi Chicama, I had a few days on 15mg, was then bumped up to 30mg for 5 days, 25mg for 7 days then tapered down slowly from 20mg. Two and a bit years later now just about to finish a month on 5mg. Been relatively pain free after first couple of weeks.
I stayed for 6 weeks until everything settled then began a slow taper from an initial dose of 20 mgs. The only tapering guidance I received was from this forum. Drops of 10% worked well.
Ask for a DEXA scan. I had the same situation, automatically put on AA but I recently asked my GP for a scan, easily arranged and it turns out that I don't need it
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