I'd love some advice...
Posted , 13 users are following.
I've realised that I have no idea any more what I should expect in the way of symptom control. I've had PMR for almost 3 years, and can't get the Prednisone below 13mg. Right now it's at 18mg - flare at 13, up to 16, still no good, up to 18 and after a week on 18 the stiffness and pain are back. I can go up and down stairs only one step at a time and with difficulty, walking is difficult, my legs hurt and feel weak and wobbly. I am wondering if I just have to put up with this, - is this as good as it gets? - or should I up the dose again? What is others' experience of symptom control?
1 like, 18 replies
Michdonn Joannamary
Posted
Hi Joannamary, I am first to answer. I would return to the last dose were you were PMR pain free. Then stay at that dosage for several days to make sure your inflammation is under control. Three years back I was at 7mg flared chase the inflammation a little at a time all the way to 30mg. Now I increase my dosage quickly in large amounts, hoping to get the inflammation under control quickly, then reduce the same way. I do not reduce if I have any PMR pain. I listen to my body and try to keep the inflammation under control. Good luck on the rest of your PMR journey try and stay active, positive and smile. 🙂
snapperblue Joannamary
Posted
Hi J- That is really terrible! Have you been free of symptoms at any time since you were diagnosed?
On prednisone dose, when I was first diagnosed, I had to go to 25 mg to get relief from symptoms and had to stay at that level for a couple of months. In the 4 years since then, I have slowly decreased to hover around 10 mg, even got down to 5 mg, but then would have a flare an have to go up. Sigh!
I recently had to go to 15 mg after a stubborn interval at 10 mg when I just refused to increase the dose despite the gradual return of symptoms. That never works!
If your problem really is PMR, it should respond to prednisone. As you probably know, the recent research indicates that PMR lasts a median of 6 years- so for many people it lasts longer.
What does your doctor think is going on? Prednisone not only controls pain, it controls the underlying inflammation.
I have always opted to fight the inflammation with enough prednisone to control the inflammation-- chronic inflammation is really bad for you. Unless you are having trouble with side effects of prednisone, I'd suggest talking to your doctor about increasing the prednisone until the inflammation is under control.
None of us wants to be on prednisone, especially after years, but PMR is a stubborn disorder and it hangs on as long as it hangs on! Each of us has to balance the bad effects of prednisone against the bad effects of long term inflammation. The recent Mayo Clinic study found much less long term effect of prednisone than had been believed.
I am really sorry to hear that you have such severe symptoms- I remember how miserable that was. The agony of getting out of bed, the Godzilla stomp down the hall to the bathroom, the screeching pain of going downstairs! Taking prednisone, I have been essentially pain free and I hope you can be too! Snapperblue
alebeau Joannamary
Posted
I am only one year on prednisone and now at 11.5 but still have morning discomfort which I chase with a tylenol #3. My blood work is done monthly and my counts are still not where they should be for ESR and C Reactive Protein. I appreciate the advice you all give in staying at a level which feels right as three times I followed the doctors schedule and each time ended up in a miserable state. I was initially hoping the PMR would be gone in a year but am now accepting the fact it is here to stay. I will be trying the DSNS method from now on when reducing but only if I feel I am ready for it.
Good luck to all of us in our daily struggle with pain.
Joannamary alebeau
Posted
Hi folks - thank you for the supportive and helpful replies!!! As you know, nothing like support from fellow-sufferers when you're having a bad day. I can see that I need to follow your advice Michdonn, and increase my prednisone significantly when I have a flare, rather than pinching it upwards. I'm going to go up another 5mg (to 23) to get this current flare under control. 18 did it for a week, but it's all taken off again.
Snapperblue, your question made me wonder, and I looked back over my records...I've had patches of 2-3 weeks of minimal symptoms, several times over the last 3 years, but there's no consistency to the dosage which produces this, and I seem to then have another flare and then need to start the slow taper again.
ina0821 Joannamary
Posted
after being on prednisone since June and is high at one point it’s 40 mg with no resolvement in my pain and stiffness, the drs now say it isnt pmr. we are doing a lot of tests and imagery. I was admitted to the hospital saturday due to shortness of breath and light headedness . definitely some congestive heart failure Waiting for more test results Ive had so much edema from prednisone and in part pred caused the failure With tapering im now down to 8mg Cant wait to be off this pred. waiting for results to echo, heart mri and heart biopsies who h will give us more answers as to why this happened Good luck to you
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maureen49480 Joannamary
Posted
Have you changed your diet at all?
I have gone to gluten free, Cut out carbs, eating nutt each day and cut down on red meat. Porridge and berries and a banana at breakfast and homemade veg soups fir lunch. Gone back ti full cream milk to protect the bones and more protein. i am sure this is helping me.
Three months ago I could not lift a cup snd could hardly move. I am now coping on 17mg predisolone which enables me ti live a reasonably normal life. Also taking meds earl morning has certainly been the answer for me.
I am also having a weekly physio session for the neck pain and that has helped tremendously.
I am hoping these changes to my life are helping.
bob03667 Joannamary
Posted
One of the greatest values of this website is to see and better understand how incredibly individualistic PMR is.
I don't know if it is because I was so physically active prior to being hit about 1 year and a half ago but at age 73, after going from having to use two hands to lift a coffee up to my mouth and putting on shoes, socks, and a car seat belt with great pain; walking, as my wife used to say, 'rocking back and forth' to minimize hip pain, I'm now almost pain free except for shoulder and neck stiffness at night and when I first get up in the morning. But, after doing about 45 minutes of upper body stretching and exercises, leg and back isometrics, and any pain and stiffness mostly goes away.
From 20 mg, I'm now down to 4 mg with no flareups (knock on wood) to date.
I wish there was more research on the advice of working through the pain and stiffness via exercises while going through a declining prescription of Prednisone.
Michdonn bob03667
Posted
Bob, Three and half years on my PMR journey, the one thing that I have learned is that each case and individual is different. I have had some terrible flares and always anything can start me on a flare. I my case I had to listen to my body and adjust my dosage accordingly. I try to stay active, positive and smile.
Good luck on the rest of your PMR journey. 🙂
alebeau Joannamary
Posted
Good for you, exercise is important as I too am finding out. I got PMR at 70 and will be 71 in January and since beginning stretches like you I am getting much more mobile.
Thank-you for sharing.
EileenH Joannamary
Posted
I really think you need to go back to your doctor and get more checks to be sure it isn't something else going on. Once that is established, this needs to be got under control.
My first thought is you needed a higher starting dose - what you describe is what I was like without any pred. And what I would be like without any pred. I take the dose I need and, like some others, it is above 10mg, has been for most of my PMR journey, I did get down to 5mg a couple of years ago but then the disease activity increased again. But when I am on enough - I feel well, I can move normally and I have next to no pain - or at least, no more than most people in their late 60s have. It is perfectly livable with. And that is what you are looking for - quality of life is all.
Michdonn EileenH
Posted
EileenH, quality for life is what it is all about. I really do not care what my dosage is my Rheumey does, it her problem. At 82 I want to be pain free and ski in the winters and ride my bicycle in the summer. Thanks to Prednisone I do! ⛷⛷🙂
EileenH Michdonn
Posted
With you all the way Mich.
And don't you think we both look not too bad on it too??????
Joannamary EileenH
Posted
Thanks Eileen! I've been tested for everything the doctors can think of, and the only conclusion is that I have "an inflammatory condition" which is presumed to be PMR. (And I'm very thankful that nothing else has been found!).
As Michdonn says, it's the rheumatologist who is so keen to lower the prednisone, and to be honest he doesnt seem to give a damn about my symptoms. Sometimes it feels as if my life has become quite limited with this. Is it possible for the disease to fluctuate really widely, so that you can sometimes be ok on 12 mg,and then at other times need 25? If it is, then I'm with you and Michdonn and I'll just increase it when I need to, but by more than a couple of mg. At the moment 18 just hasn't been cutting it at all.
Joannamary Michdonn
Posted
That is so wonderful to hear! I've never been a skier, but I'd love to be able to do my garden and go for walks at least. It's great to think it might be possible.
snapperblue Joannamary
Posted
Grr. As my doctor says, he treats the patient not the numbers- i.e., not the results on the inflammations tests or the dose of prednisone. What matters is how the patient is doing. PMR varies so much, each patient should be treated as an individual.
From what I have learned on this forum, it is best not to vary the dose a lot. If you can get to a dose that works, stay there!! After a month or two, you can start to decrease very slowly.
Doctors often get very concerned about the cumulative dose of prednisone over the years. Even my very accommodating doctor began to worry until I sent him the Mayo clinic article (which he read!) and he was relieved at the evidence of lack of side effects of pred and he relaxed about it.
Most doctors are less flexible, I fear.
You need relief from the misery you are living with. The only good thing about having PMR is that, if you are going to have an autoimmune disorder, this is the one that can be controlled with medication. So there is no way you should be stuck with symptoms as bad as they were without prednisone.
Michdonn EileenH
Posted
EileenH, I think we both look great. Please give my regards to your husband. Enjoy the Dolomite in the winter. ⛷⛷🎅🙂
Michdonn Joannamary
Posted
Believe it, is possible, I think an anti inflammatory diet helps, staying active, positive and smiling will also help. Good luck on your PMR journey. 🙂
EileenH Joannamary
Posted
I skied WITH untreated PMR - I had to start with a couple of VERY short runs at the beginning of the season but by soon after xmas could have a pleasant morning up the mountain. I had to be careful not to do that "one last run" when I knew I really had done enough - got stuck 3/4 of the way down one day, could see the lift station but had to sit and rest for 15 mins or more before I could get there! I could do it because I had a season ticket and was out there 3 times a week, I knew I'd be back soon. I'd even go up and just sit in the sun or do one run at times or go down and back up the mountain on a lift just for the pleasure of the view - much of our mountain is gondolas so you can do that or down and part way up on a gondola and the rest on a chair with just a tiny bit on skis inbetween.