I have been tapering off pred since diagnosed July 2018 started prednisone at 15mg tapering 1mg every 4 weeks this was too fast and GP agreed so went to 8 weeks all went well until Oct 2019 got to 5mg and it flared ended back up to 9mg this time tapering down 9mg for 6wks then 9 & 8mg alternate days for 6wks then down to 8 and so on Sept this year I was blame down to 3 I was so please I had got down that far but sadly as I went to the next taper it flared and unfortunately, I have had to increase, been trying to do so 1 mg at a time and just gone up to back up to 6 and still in pain. Trying to speak to a GP is imposible. Since diagnosis each Dr seem to have their own thoughts on prednisone so it is confusing, seem reluctant to refer me to a specialist. I went part-time working in March this year as my job was sitting and driving it didn't help, it still caused problem so am giving up the job. I know GPS are busy and COVID hasn't helped. I just feel so down with it all, I hate going to bed laying there is like torture. Today I just felt so alone, Which is how I found this site, and reading some of your post has made me realise that I am not alone. Thank you for sharing your stories have answered so many of my questions.
PMR : I have been tapering off pred since diagnosed... - PMRGCAuk
PMR
It sounds that currently 6mg is too low a dose to keep you comfortable. If you go back to the dose where you last felt OK and reduce from there, I would have thought would be the best thing to do.
Possibly but I will try fit a few more days. Thank you
I personally have found from bitter experience it is not worth trying to live it out as in my case it does not work.
Hi Twinkling1. Others more experienced will be along, but just to say you're honestly not alone......there are so many of us here who have felt very isolated too but have found support and what I consider to be a kind of 'forum friendship' when becoming part of this community. You are also experiencing what many of us are experiencing with regard to lack of access to medical professionals and mixed messages from them. I'm 2yrs into PMR diagnosis and found this forum approximately 6months ago. Best advice given to me was to:-1. realise quickly that eventually I will probably know more about my condition than many of the health professionals I'll come into contact with! 2. Remember it's NOT a race to get off pred asap because you have to concede only to the lowest dose that will successfully manage your inflammation and symptoms, and 3. Tapering is a very slow and delicate process that demands patience.
People on here are knowledgeable, informed and most importantly provide a reliable source of help, information, support and advice. You will have 'down days' but all the positive things you'll experience here will maybe allow you to feel more hopeful and supported now. Wishing you all the best.
Thank you so much, I was in tears reading this and it felt good so thank you
Oh dear! I didn't intend to make you cry, but it is important you know you'll be supported now and that you'll get through this. It's not an easy journey and there'll be constant moments of unpredictable 'frustrations' but PMR is treatable and in most cases, eventually burns itself out....as it did with my sister. My dad had it for the last 8years of his life but lived very happily on ½mg to 1mg pred daily to control and manage inflammation and symptoms. (He passed away from a completely unrelated health issue.) This can be a very unpleasant and long condition to live with but acceptance and no (or at least realistic) expectations are the key! I know it won't always feel like it, but there really are far worse medical conditions we could be suffering from and I try really hard to remember that on my 'down days'. Not easy I know.
Oh No sorry I should have said happy tears I didn’t feel so alone. So thank you for both replies Thank you 🤗 and I will remember that too
Haha! Thank goodness for that! I'm pleased you feel less alone now and know from my own experience you'll be well supported by this community. You're in the fold now.🙂🙂
Welcome. This is a good forum and better than the general Facebook groups. Are you in UK? If so you may find it helpful to phone the charity’s helpline and speak to someone. You will also get great advice here from some very knowledgable people. You definitely are not alone.
Yes in UK I will consider that thank you
Hello, sounds miserable and it doesn’t help at the moment when many doctors have enough time to pass judgment and tinker but not enough to be there to support if there’s any fallout.
Have you tried dropping in half mg steps? I could never cope with 1mg and had to do it in 0.5mg every 6-8 weeks.
It was until I saw these post wow the support here is Brilliant and I will try the 1/2dose thank you
Hello Twinkling
So glad you’ve found us & you’ve had a lot of sound advice, as Kendrew has explained it’s not a race to zero, the aim is to find the lowest dose possible to control the symptoms & keep you comfortable & as SnazzyD says 0.5mg drops are better once you reach 9mg as it’s suggested we don’t reduce nub more that 10%
The alternate 9mg/8mg often suggested by Rheumatologist’s is ‘the same’ in theory but many people don’t respond well to the Up/Down Dose.....
If you ask for some 2.5mg & extra 1mg Tablets along with your 5mg you can make the dose up accordingly. Keep them in a 7 Day Pill Box, make it up once a week & it’s also an easy way to check if you’ve taken your Meds or not.
Don’t get too disheartened, you’ll get there. I too took Early Retirement, l tried working part time but was expected to still produce the same results but in less hours!
Kind Regards
MrsN 🌸
Thank you yes I do use a 7day pill box. Working yes same results impossible task. I haven’t tried the 1/2 mg that’s may help so thank you
Welcome Twinkling, I am so glad you have found us,
There are so many people on here who know,from experience, what they are talking about,
Things will get better.
Jane
Thank you
Hi twinkling 1. I am just reading all the responses you have been given so far and really in this group you receive and give, a lot of support. In my 4 yr PMR journey I personally manage my own “ illness” and don t expect anything from my GP. other then sending me the outcome of my blood test. I know she will be there if I need her. I got my own blood pressure machine knowing that the PMR does not kill me but high blood pressure can! So I keep a close eye on that...
I too had to retire from my work which was sad, but... I can t change it. I am OK on 3.5 to 3 mg prednisone and have been stuck there now for a year. I rest an hour a day, most days, and supplement my prednisone with paracetamol. I walk at least 40 min a day, and started to pick up some mindfulness meditation again...
Empower yourself by reading a lot about this PMR , that decreases your anxiety about the whole thing...yes, this forum is very empowering and informative. Go with the flow if you can, don t fight it. All the very best.
Thank you I do Palaties and walk most days and try to be heathy thank you again for the support.
Hi, and welcome.
As others have said you are not alone!
First thing, PMR can last a lot longer than you might have been told - anything between 2 to 6 years - so s others have said you probably have gone below the level of Pred you need.
The fact if you've flared before, doesn't seem to help either, it seems to make the tapering process more difficult. A stated you are not reducing relentlessly to zero despite what you may have been advise, you are reducing to find the LOWEST dose that gives you relief - and that needs to be done relatively slowly - too fast and you shoot below it!
You may also be feeling rough because of adrenals not working properly as yet.
'
Have a read of these 2 links - one is a general view of PMR/GCA and aimed at new patients (although you aren't I know) - and the other a link to slower tapers -
healthunlocked.com/pmrgcauk...
healthunlocked.com/pmrgcauk...
Come back with any more questions whenever.
Thank you I have to admit, I was led to believe this would be at max 3years. Reading the post and see how long this is for some, I understand it is a slower process. Thank you
Welcome Twinkling1, I tried twice to go from 10 to 9mg. Managed to go to 9.5 on the third attempt and have done 0.5mg tapers since, staying longer the lower I go. SI recommend Kate Gilbert’s book Polymyalgia Rheumatica and Giant Cell Arteritis; A survival Guide.
Thanks meggsy I have to admit I didn’t realise there is so much out there. Thank you again I will have a look. 😊
👍 🌻
Hi Twinkling . So pleased you have found this site. You will get there- just takes time and patience ( which sometimes wears thin but then we’re back on track) You are definitely not alone!! 💐
Thank you Jackoh yes just in time I have learnt so much in 48 hour wow I will be recommending this site to someone else.
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