Hello everyone
I was diagnosed with PMR 4 years ago and each time I reduce I get another flare up. I am trying to reduce to zero as advised by my GP. I started at 4mg down to 3 and a half after 2 weeks then down to 3mg. Now my aches and pains have got worse so I have gone back to 4mg again. ESR test has come back at 15 which is what it was a month ago when I felt generally OK. Could the pains be due to something else? I was expecting the ESR to be higher.
Blood markers often lag behind symptoms - which is why we ALWAYS say symptoms are the key.
Trying to reduce every 2 weeks is much too quick at any dose, and once below 5mg it is absolutely bonkers, no wonder you keep having issues.
Suggest you stay at 4mg for a month, and then continue reducing by 0.5mg a time but no quicker than every 4 weeks, but even longer would be better. The lower you go on Pred dose, the slower you need to go…
Thanks, my doc just wants me off pred because of my osteoporosis. I have a rheumatologist appointment at the end of October, I’m hoping I get a definitive plan.
Your doctor may want you off pred but unfortunately PMR doesn’t want you off yet. The way he is rushing you is just making you be on pred longer. The advice from Dorset Lady is excellent advice as you cannot rush PMR. Good luck
Thanks
Can understand that… but tapering you too quickly has more negative results…
a. It leaves you in unnecessary pain, and
b. Is is likely to mean you end up taking more Pred and for longer.
What’s the point in that? Maybe something to take to the conversation 😊
" I am trying to reduce to zero as advised by my GP"
You are NEVER reducing relentlessly to zero - you are looking for the lowest effective dose, a process called titration and one your GP should be familiar with, albeit with pred you do high to low, with other medications it is low to high.
The lower you get, the slower you need to go - and at any dose every 2 weeks is too fast, Half a mg every months is more than enough. Symptoms flaring at a similar dose more than once is your body telling you that you have arrived at that lowest effective dose. It doesn't mean you won't get lower - just not yet.
The pred cured nothing, it is a management strategy to provide a better quality of life until the underlying disease process burns out and goes into remission. And that may take much longer than the average GP thinks, If you get off pred then the PMR will be back. If you have a problem like osteoporosis there are other solutions to stopping pred which will leave you immobile.
There are bone protection medications that will reduce the risk of fractures and which should have been offered far sooner than now. It is recommended they are started together with pred. Have you had a dexascan? Have you got the results? Has the GP already started you on a bisphosphonate?
I think the bottom line is that my GP, although sympathetic, really doesn’t understand and just wants me to stop taking pred because of the osteoporosis. He initially wanted me to reduce by 1mg every two weeks but I said I thought that was too fast.
I am taking calcium tablets and was offered alendronic acid but as I have a long standing reflux problem I didn’t want to take it.
I had a dexa scan but have been unable to find out the results, I was just told I have osteoporosis in my spine and shoulders and some osteopenia too.
There are other options besides AA - and think you really need to know results of DEXA scan , then you can make a decision . Suggest you look at the ROS site - they have a very good helpline [but would probably want to know results of scan]
There was a very good talk on the subject of bisphosphonates recently at the AGM zoom meeting - why not contact the charity and ask for a link to the recording -
This was reply from Fran to a previous query -
‘The AGM and Members' Day is strictly members only so won't appear on the website. However any member who didn't register but would like to receive the recording can email us and we'll send a link to the recording.’
Thank you, I have asked several times for the results but have just been told I have osteoporosis, I suppose they think I won’t understand them 😂
I will try and get somewhere with the rheumatology appointment. Fingers crossed
You may well have osteoporosis, but it’s still good to how severe -or not-it is…
As DL says, there are alternatives and this was emphasised by the speaker at the PMRGCAuk AGM in early September. You are quite right in refusing AA if you have reflux but there is an infusion form, zolendronate, which is an infusion at yearly intervals. There is also Prolia/denosumab which is 6 monthly injections but either you continue with that indefinitely or you must switch to a bisphosphonate when discontinuing Prolia since there is a rebound loss of bone density when you stop it resulting in spinal fractures, the bisphosphonate stablises the bone and prevents that. Prolia is very effective and increases bone density quickly and the bisphosphonate maintains the improvement.
Although bone protection medications appear now to be as commonly advised as stomach protection meds (which incidentally can lead to bone thinning themselves) it is always better to try to deal with an issue naturally. As you already have osteoporosis then you probably do need good advice about what is the best medication for you as all of them come with differing unwanted, sometimes serious side effects. Please read up on them and don't necessarily accept the first medication offered by the rheumatologist. Colour me cynical but it may reflect which drug representative they were last in contact with.
One place where doing your own research can be very helpful!
In any case anyone can benefit from a bone-friendly diet and some judicious supplements plus appropriate exercise. For those reading this with "only" osteopenia (which is no more than normal bone thinning as we age, but can be exacerbated by medications like corticosteroids) then natural methods are really best. The only side effect is generally better health and many of us have found our bones have benefited enough to avoid having to take medication.
healthunlocked.com/pmrgcauk...
osteoporosis.ca/medical-con...
Have you watched the talk from the AGM? She was very adamant about using bisphosphonates. There is a point where diet and exercise aren't enough.
I will do. Thanks for your help
No. Don't know how to find it. Not that I've looked 
I'm equally adamant that human beings have lived on the planet for a million years and not needed these types of medications. If we do now it's because of the lifestyle of "civilisation."
Did she mention Vitamin K2 and its proven role in maintaining bones? If she did I will trust her more.
You had to have registered and really it is for members.
She mentioned it but was unimpressed with the research.
Humans have lived on the earth for a long time but I wouldn't say they didn't "need" these medications. Archaeological finds show that osteoporosis was a "thing" thousands of years ago and probably contributed to fractures which didn't heal before death. However you want to regard "civilisation", this is how we live now. And that led to a need to develop all sorts of medications, including vaccines for diseases that killed at a young age in the past and antibiotics for the same purpose. I assume you take advantage of those?
HeronNS Yes, that may be true but so is survival into our 80s rather than our 40s and especially for women, only really lasting till our childbearing years are over. Although I am in favour of natural solutions, I think that these medications are often the price we pay for living a longer life
I've never said that people who need the medications shouldn't take them. I say make sure you really need them. If you do, read up on all the options to make sure whatever you are being offered really is best for you. I've been following the bones communities for years and there are so many people who have suffered greatly because they didn't have enough information. I also know that I could have been one of them. And I am not.
P.S. I'm 77
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