Help with coping with PMR
Posted , 10 users are following.
i was diagnosed with PMR about 8 weeks ago.fortunately my physiotherapist recognised the condition.
i was able to get Predisolone very quickly and i have a GP who understands the condition.
I am wondering if this is linked to the shingles virus, as i did get shingles from having the shingles vaccination.
i also had a very traumatic fall when i smashed to the ground because of an uneven paving slab in a High Street, but i also had a bone removed from my hand in June this year and collagen put into the wrist.
Reading on sites that other people have had shingles, others had trauma, and other operations ,could any of these things be the triggers?
Although i started with 15mg Predisolone that was not enough so the dose was increased to 20mg Myhead was in quite a state and I felt awful, so I have managed to get the dose down to 16 mlg by dropping 1 mlg a week.
i seem to get a good day and then i am in a lot of pain the following day, the mornings are the worse time i have to do anything in the afternoons and evenings. getting dressed is difficult.The pain is worse in my neck and shoulders, but also affects my hands. There are days when i cannot lift a cup or lift my arms. My thighs also get very painful.
There is no joy with this condition.
0 likes, 22 replies
mary19068 maureen49480
Posted
Hi maureen
15mg of pred cleared my pain after 2-3 days. Are you sure you have PMR did you have a CPR and ESR blood tests. 15mg is the starter dose and usually clears the pain within in a short time. You can be left with Post-Herpatic Neuralgia after shingles that can last for quite some time and is painful. I got shingles caused by pred suppressing the immune system and i was left with PHN which i still have. I tapered off pred 2 years ago.. If you have to keep taking higher doses to ease your pain you may not have PMR....see how you get on....
maureen49480 mary19068
Posted
Blood tests have confirmed PMR. i had shingles 3 years ago but yes it does seem to continue for sometime after.
Reading some of the reports quite a few people with PMR have had shingles. i wonder if this is since the vaccine programme.
Anhaga maureen49480
Posted
High inflammation markers and absence of confirmation of any other condition plus symptoms are what are used to diagnose PMR. There is no blood test which confirms a PMR diagnosis.
Given that you have PMR you must learn to pace yourself. Keep active, but rest between periods of activity and let some things go. Eat healthily - lots of veggies, very few carbs especially from grains or potatoes. As much as you can, avoid stressful situations.
The live shingles vaccine has been implicated in development of shingles as well as PMR. Jury still out regarding the new vaccine which is made from killed virus.
Accept that you are in this for the long haul, but things do get better. I've been on pred for over four years, following slightly over a year undiagnosed before that. I'm now cautiously approaching what I hope is the final taper to zero, but I was at 3 from a starting dose of 15 after the first year, and have spent most of the past three years at doses between 2.5-2. Just don't be impatient to get to lower doses. "It isn't slow if it works". "Tortoise not hare".
maureen49480 Anhaga
Posted
Thankyou for your help.
I am increasing the dose from tomorrow to 17mlg and will stay on that and see how I go.
The last two days have been difficult so maybe I need to take the advise from people on this site.
So glad I have found this support group as the last few weeks have been quite miserable.
I have completely changed my diet. Gone Gluten free, mainly cut out carbs. Plenty of dairy and berries and daily handful of nuts.Also mainly cut out alcohol which hasnt actually been hard as I havent really fancied a drink. It may be difficult next month when I am on an all inclusive drinks package on a 28 day cruise!!
celia14153 maureen49480
Posted
Well done! It takes time for all the implications to sink in and sometimes it dents your confidence. You're going to be fine - and I have had a drink or nine while on Pred, (alongside plenty of water), with no ill effects. Happy Cruising! 😃
maureen49480 celia14153
Posted
Thank you, just trying to be sensible so I can manage the journey, Time changes will be difficult - 10hours so I have to work meds out or I will be awake all night, worse than now!
Anhaga maureen49480
Posted
Oooh a cruise! Make the most of the life of luxury!
maureen49480 Anhaga
Posted
will do thank you, booked 18 months ago before this problem came up.
Michdonn maureen49480
Posted
Maureen, I had shingles as a young man, then came down with PMR several months after get the old shingles virus vaccine. Who knows what caused the PMR? 🙂
Michdonn maureen49480
Posted
Maureen, dairy can also cause inflammation in some people, it does not get easier, but once you understand your triggers it will be easier. 🙂
Anhaga maureen49480
Posted
I know people worry about the change in routine. I have to say, from my experience only, I've always felt better when away on holiday.
Michdonn maureen49480
Posted
Unfortunately Maureen, that is true. Too much pain, take too much Prednisone and the side effects are terrible. Here the good news Prednisone can control the pain. The bad news try to rush off the Pred and you will end up with more pain plus end up taking more Pred than if you reduce slowly. I do not rush, my tapering cycle are around 45 days, reducing by 10% or less and never never reduce if I have any PMR pain. Don't rush into a flare! Good luck on the rest of your PMR journey, try to stay active, positive and smile. 🙂 I believe that smiling helps! 3 1/2 years on my journey currently on 3 mg tapering to 2 1/2.
maureen49480 Michdonn
Posted
Thank you for your support, that is my way of handling it as a lot of people have far worse to cope with.
I am trying to get to a place where i can cope with a long haul flight in a months time, particularly with the meds and time change of 10 hours
celia14153 maureen49480
Posted
Others will be along but I think you are tapering too fast. Prednisolone deals with the symptoms not the cause, and it can take some years for remission. To drop from 20mgs to 16mgs in eight weeks isn't giving your body a chance to clear the inflammation which is causing the problem. I would up the dose to where you get at least 70% relief and stick with it for two or three weeks before starting a slow taper. This should be no more than 10% of the dosage you're on. Here's the link for the slow taper. https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
Good luck! Let us know how you get on 😃
maureen49480 celia14153
Posted
Thanks, but the meds leave me feeling totally on a different planet with the higher dose. I dont feel safe to drive and as a widow i have to get about living in a rural area.
i am used to predisolone as it has been the emergency treatment for my asthma for years .
Although that was 5 days at 40 mlg a day and then stopped.
I am having some better days now and i find that having a couple of paracetomol morning and night does help.
I was prescibed 15 mlg but upped it to 20 but with my GP support have reduced and the bloods are going in the right directioN.
It has been good to find a support group.