PMR tips
Posted , 13 users are following.
I was diagnosed at age 70 with PMR, both ESR and C Reactive Protein were in the 70s - 8 months ago. I am now at 12 MG prednisone and it is a slow process to reduce. I got to 9 and was in so much pain my doctor told me to go back to 12 and start again to try and reduce but I am not hopeful.
Has anyone had success by combining prednisone with a holistic method as well as I am thinking this current method is just too slow.
thanks
Al
0 likes, 11 replies
EileenH alebeau
Posted
It is not the reduction is slow - it is the autoimmune part of your PMR that is slow to die down. There really is little you can do to speed that up, PMR calls the tune and does what it wants to.
Cutting carbs may help - sugar is very pro-inflammatory and many people say they have been fine at a given dose of pred until they had a party or something and binged on the carbs they had been avoiding. It also reduces weight problems and the risk of developing steroid-induced diabetes. We have had a few people who thought they couldn't stop eating carbs until diabetes poked its head over the parapet. but when that shocked them into trying it they couldn't believe the difference.
People absorb between 50% and 90% of the oral dose - if you are a 50%-er you will seem to need more pred. to manage your symptoms than your neighbour who is a 90%-er. PMR requires pred for a median duration of 5,9 years. That means half of patients take longer - but also that half of patients are off pred sooner. Only fewer than 1 in 5 are off pred in a year, a third take up to 2 years - so at 8 months this really is early days.
There are other drugs that are touted as "steroid sparers" - but they may or may not work and often only allow a mg or two difference. Even the very expensive biologic Actemra only works to get about half off pred altogether. I'm not sure what you mean by holistic treatments - but in all the 10+ years I have been on the forums I have met no-one who has found anything that really works.
You will get there but you will have to be patient.
alebeau EileenH
Posted
Thanks for your answer and the heads up on duration
I will lay off sugar as you suggested and see if that helps.
I am taking Risedronate which is supposed to help counteract the damage done by the Prednisone
I think as far as holistic I was thinking of taking daily doses of anti-inflammatory spices like tumeric and ginger and maybe other supplements like Devil's Claw.
EileenH alebeau
Posted
After over 7 years on pred my bone density had hardly changed - and that was on just calcium and vit D. Osteoporosis is not a given - about 40% of pred patients lose bone density, it is said that 50% of the US population develop it even not being on pred...
Careful with the supplements - they can interact with other medications. There is a chap in Australia who does a lot with Devil's Claw and swear by it - there is a website. Several people have used turmeric and ginger and garlic in cooking and say they feel they do make a difference in that they notice when they haven't had them. But again, it depends on other medications too and for some people the supplements of turmeric cause stomach upsets although dietary turmeric seems OK for most.
Anhaga alebeau
Posted
Have you been tapering using a slow method?
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
This is known to reduce the risk of withdrawal symptoms, and lessen the likelihood of a flare of PMR by tapering too fast, past your current ideal dose.
alebeau Anhaga
Posted
With various setbacks I am now on a slow method that was working till I hit 9 mg then pain was getting unbearable again so now I am back to 12 and will taper verrry slowly.
Thanks
EileenH alebeau
Posted
It doesn't matter how slowly you go - you won't get lower than the dose you require to manage the current level of inflammation.
You are never reducing relentlessly to zero. You are looking for the lowest dose that manages symptoms as well as the starting dose did. The slow approach helps get lower - but there is a limit. When the pain returns at the same point more than once it is your body saying enough.
Michdonn alebeau
Posted
Alebeau, Three years on my PMR journey on 4mg tapering to 3.5. I am never sure what really helps, but I take turmeric, cinnamon, calcium, magnesium, vitamin K and MSM daily. I try and stay active, positive and try to smile. I would advise you not to rush. I started on 20mg of Prednisone and following doctor's orders rushed into a bad flare had increase from 7mg to 30mg to get relief. Nice and easy does it is NOT a RACE! Good luck. 🙂
alebeau Michdonn
Posted
I appreciate your feedback.
It is definitely a challenge to manage the correct dose, my doctors have made several mistakes on that front so now I will be the one deciding if and when to cut back from my current level which BTW seems too low still as I have been resorting to TYLENOL #3 for pain relief. I am apparently seeing a PMR specialist at a hospital but even a specialist can't know how individual patients are going to react to their scheduled reductions.
I will give it another week then probably increase the dose, but I am afraid to go too high, maybe 15 mg at first from my current 12
Good luck to you as well.
Anhaga alebeau
Posted
Sadly a PMR expert should know enough that only the individual patient can really control the rate of taper. An expert can only offer advice and guidance. The patient is the only real expert on his/her condition!
EileenH alebeau
Posted
The first mistake is to SCHEDULE tapering. It must be flexible and tailored to the patient and their needs and symptoms.
Michdonn alebeau
Posted
Alebeau, I also never reduce if I have any PMR pain NSAIDS really have little to no effect on PMR pain which is caused by the inflammation. Thanks for best wishes I doing well preparing for the upcoming ski season. 🙂