help please
Posted , 18 users are following.
I am 57 years old and was quite active when the excruciating pain started in my hands through the night. I sluffed it off to all the years of competitive volleyball and early onset arthritis untill it moved to my legs and it was unbearable during the night. Only to move on and get worse with shoulder pain and then my toe. After weeks my Dr diagnosed me with PMR but didn't put me on prednisone hoping to see a Rumi. I ended up in emergency and thank god they put me on prednisone. It has been a week on prednisone and my Dr has increased it to 20 but i still wake up in the morning not able to move my shoulders or walk for about 2-3 hours after i take my pills. IS THIS NORMAL
i know I'm on a long road and it seems Canada sucks for having groups. I look forward to hearing from anyone
Maid Mariane
0 likes, 63 replies
lynn55953 maid_mariane
Posted
i have noticed that there seems to be no groups that i could find in Canada. I was diagnosed in November and started out on 45 mg. of prednisone and now on 15mg. cant seem to get lower than that. it is debilitating and prednisone has so many side effects! I'm glad i found this site.
EileenH lynn55953
Posted
There are 3 based here in the UK, This one is the original and 5 ladies met here 12 years ago and did the spadework to get the PMRGCAuk charity going. We did try to get a North American group going but that failed - there are a lot of Canadians using the UK sites, one here and several on the HealthUnlocked site.
peter48568 maid_mariane
Posted
Hi Maid-Ma
i take my prednisone at 7am every morning.
it doesn't react right away but i saying that, i am at a level where it is not overly bothering me. i can tolerate a small amount of pain, I don't want prednisone masking everything.
Before being properly diagnosed, by me, as my GP was away, via a blood rest at hospital, i did present to hospital twice with server knee pain. They gave me Oxycodone to relieve the pain.
I have only just joined this group but first diagnosed in March. i have learned from my experience that even a 1mg change is very noticeable, others may have different reactions, not everyone is the same.
Some here say i don't have PMR by my symptoms, my blood tests say differently.
i am not rubbishing anyone, just saying we are all different.
EileenH peter48568
Posted
Raised ESR and CRP can be due to other causes - and aren't specific to PMR. There is no test that can say it is definitely PMR. A positive temporal artery biopsy is 100% certainty it is GCA - but a negative one only means they didn't find what they were looking for, not that it isn't GCA.
sierrapamela maid_mariane
Edited
When mine first started it was like yours. But it can get bad very fast with stress. Sounds like you are not on enough prednisone. I am learning that you have to get it under control before you can start reducing. I am going to try the one posted on this site called dead slow reducing that a Swedish gentlemen developed. As they have told me patience.
It is not normal to not be able to move for 2 or 3 hours after you wake. I think this may be a sign of not enough prednisone. I am working with a doctor who is also working with getting the inflammation down in my body by looking at possible food allergies and digestive issues. It is a long slog no matter what. You will be well someday.
EileenH sierrapamela
Edited
Ragnar started the idea, spreading a reduction over a few days for doses below 5mg. I developed the DSNS concept from his idea but took it a lot further, as he will tell you himself.
Many people WILL still find it difficult to move in the morning even on the correct dose of pred for a few reasons. A new dose of inflammatory substances is shed every morning about 4am and if you leave it too long before taking your daily dose the inflammation has time to take hold. Then you have the time it takes to absorb the pred and it to reach an effective level in the blood: about 2 hours. By this time there is a fair bit of inflammation to deal with - and like mopping up a puddle from an overflowing bucket, the more there is, the longer it takes. So the earlier in the day you take the pred, the sooner you get the benefit. Taking it at 2am is the ideal for plain white non-coated pred - it is ready and waiting to deal with the inflammation and it never gets to take a hold and you have no symptoms.
In others, the anti-inflammatory effect doesn't last until next morning, it varies from 12 to 36 hours depending on the person. I can take a dose 1x daily and it is still working well more than 24 hours later but I know people who find pain returning long before bed - but increasing the dose doesn't help, splitting the same dose often works better by extending the duration of the anti-inflammatory effect. Everyone is different...
sierrapamela EileenH
Posted
Dear Eileen, You have been so helpful. I have shared you dead drop protocol with both of my doctors and they appreciate it. I take 5mg twice a day at 5:30 am and pm. As I reduce would it be best to reduce the morning dose or eveningdose?. I take the white pred no coating.
EileenH sierrapamela
Posted
Difficult to say - it depends on the person. Some people try it by reducing 1/2mg on each, or on one at a time. I have never needed to split so I haven't played with it myself/
peter48568 EileenH
Posted
when i went from 25mg to 12.5mg i split a 25 it has a cut mark to split.
Here in Australia we get pills (not coated and taste yukky) in 25, 5, 2 &1mg so you make up multiples out of them.
EileenH peter48568
Posted
Yes, mine are 5,2,1mg - but are Lodotra/Rayos so can't be split. In the UK you get 5, 2.5 and 1 which is a bit more user-friendly! Very very occasionally you can get 20 and 10mg. Prednisone here in Italy comes as 25mg - and that is your lot!
sierrapamela EileenH
Edited
That sounds like a good plan. 1/2 on each. I also have 10/5/1 mg to chose from. So I think it is very doable. Thank you for responding.