Now 2.5 years into PMR. Can’t get below 10mg..have tried with DS method but 9.5mg makes the fatigue, and pain really bad. 10mg gives a ‘relatively’ normal life for most of the day until early evening.,I do split evening/morning dose. By 6pm legs and arms seize up and go to bed; only place that offers comfort and respite.
Is this normal? Life seems a daily struggle. Mr GP is not unhelpful and leaves me to my own devices...he is super busy, overloaded with patients, majority of which are old! AND COVID.
Should I be concerned? Will I ever be able to reduce? I have tried several times over a long period (weeks not days) to go from 10mg to 9.5mg but without success.
What should I do?
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Pmrmolly2018
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It took me over 4 years to get reliably below 9mg pred - 10mg isn't that different. I've had the symptoms for 15+ years, been on pred for 11+ years and more recently have needed 12mg at least and currently 15mg again - where I started. My rheumatologist here says he sees a lot of patients who need pred for a very long time and struggle to reduce - I'm stuck at a higher dose than most. I did try methotrexate but couldn't cope with the fatigue it caused together with apparently enhancing pred side effects I have never had with pred alone. I do know that stress makes me flare badly and I have a low threshold: quality of life is the most important thing as far as I'm concerned and luckily I have doctors who agree with me! I am a sole carer, I must be able to function and I haven't time to need to worry about some of the adverse effects of adding in other drugs like methotrexate or leflunomide. I get on well with pred and know where I am. Better a few mg more pred than (maybe) adding in another drug and its side effects.
But two and a half years is only early days - the median duration of management of PMR with pred is just under 6 years:
It’s known that prednisone is the only treatment to help control our PMR. Then why do rheumatologists suggest us to start taking methotrexate to enable us to get off prednisone.
Because for some people it does seem to change the way the body metabolises pred and you get the same result for a lower dose of pred. For me it just made pred side effects I'd never had appear! And if a diagnosis of PMR is wrong and it is really an inflammatory arthritis, then mtx is the first line approach.
As PMRPro has said 2.5yrs is not that far into most people’s PMR, so don’t get yourself in a tizzy about it. Obviously 10mg is what your illness needs at the moment, so just stay at there. Doesn’t mean one day you won’t be able to get below, but not now.
I’m not surprised people are finding it hard to reduce with the amount of stress going on over the 8 months or so, and likely to continue for another few more. Add in it being winter and that makes it even more difficult.
I know you want to get lower, but being comfortable is better! Just be relieved your doctor is not hassling you to reduce.
Thank you to everyone who has sent encouraging messages. So many of us with our different journeys. It is helpful to learn of others experience snd knowledge.
I am nearly 5 years into PMR and like you stuck on 10 mg per day. Also like you I've tried DSNS method.... last time 2 months to get to 9mg but I couldn't cope with it for long. Next time I'm going to try DSNS to 9.5 mg over 2 months but I'm hopeful rather than expectant as I feel like 10mg is just about keeping me comfortable enough. If I was having to retire to bed by 6pm I would be considering increasing my dose by maybe just 1mg. I'm all for quality of life over worrying about pred. dose, especially in this day and age.
I’m in the same boat, 2.5 years on pred and “stuck” at 9mg. I flared 4 times during that time, and lowest I got was 8.5mg before flaring and having to up my dose again.
I will say that in the last 5 months or so I went from 10mg down to 9.5mg, stayed there 3 weeks, then down to 9mg (where I’ve been for a month now). Because my taper was extra slow, and I stayed at each level 3-4 weeks, for the very first time my ESR and CRP have remained at the same, low level. I am ever hopeful, and after my blood work next Monday, I plan to try and taper down to 8.5mg, fingers crossed.
My GP is supportive and patient and just tells me to continue on this very slow taper, monitor symptoms and bloodwork results, aiming to get down to 5mg (NOT “0”).
Keeping calm and peaceful, eliminating stress also really helps. I’ve been on a break from social media for a few weeks now, intentionally filtering all incoming content (no election or pandemic news for me, I only check updates in our small. rural health region).
This has actually meant ending a long term friendship that has been filled with stress and conflict the last few years. I also avoid another person who is filled with anxiety and fear as they believe alternative theories and are angry about health restrictions, masks and vaccines. Being around that person and witnessing their anxiety is stressful itself.
Exercise, rest, nutritious food (mostly), and time with my twin grandsons keeps me healthy, happy and mostly stress free.
In the end, we need what we need in the current course of our condition. I’ve learned “forcing” a taper to achieve a certain number, invariably leads to a flare and upping my pred dose anyway. If I can’t lower to 8.5mg I’d be happy to stay at 9mg for more months and try again later.
Wishing you all the best in your efforts. It is a complex process for sure, usually not a straightforward path forward. It is challenging to remove all stress from your life, but worth trying.
Agreed! We can do our best to reduce stress, but never completely eliminate it. Life happens and certain events, people or even places can generate stress.
You can't remove stress but you can control the way you react to it with things like mindfulness, gratitude, loving kindness etc etc. Accentutate the postive, eliminate the negative, as the song goes
Like you I’ve had PMR for 2.5 years and the lowest pred I managed was 8.5 mg and then I had a flare so went back up to 10 mg. I’m back down to 9 mg but do notice the difference . I did started taking methotrexate when I was struggling to get lower than 15 mg and I think it definitely helped me get to 10 mg . My GP is very supportive and says the side effects of pred are greatly reduced when you are 10 mg and under, so I need not worry . He thinks if I can get to 7.5 I would be fine staying at that indefinitely. In fact he told me that he was on 5 mg daily for over 30 years and only recently stopped taking it - and his adrenals started working again ! I hope all our posts have put your mind at rest .
Pmrmolly2018 what you are experiencing is so like what I’m experiencing. I’ve been on prednisone for a little over a year and this is my second time trying to get under 10 mg and feel good. The first time I got to 7.5 but everything came back and had to go back to 15 mg to get under control. I’m at 9.5 now but shoulder pain is back along with fatigue and depression so most likely will up dose again, get rid of inflammation and start my taper again. From all the other responses we aren’t alone in this!
You would be better to try just going back to the last good dose - yoyoing from 15mg down to 9 and back to 15 and repeating will make it more difficult to reduce. When creeping down, never let a flare get going. Stop reducing straight away ...
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