Advice needed please PMR

forgot to add link https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

 

Anhaga, you said, " I went back to 10 which was where I had last been comfortable and that worked."

It would be helpful to me (and perhaps others) if you could describe "comfortable". Is there stiffness? When? Does it go away during the day? Is there pain associated with the stiffness? Where? Must you wortk through pain, or is it quite bearable? Must you rise slowly from a sitting position and/or push yourself up? Is there pain lying in bed at night?

Is energy level involved at all in your "comfort", or is that a separate issue?

Also, when do you take your dose? Is it prednisone ort prednisolone? Do you take other pain relievers? Do you supplement with potassium or other supplements?

I hope I'm not asking too much. It's just that without specifics I don't know how to compare my situation with others'.

66, male, 2 years from pmr onset, 19 months from treatment start. Ive been at 4.5mg/day prednisone for about 7 weeks. I tolerate a bit of stiffness in groin and arms and a few twinges in my arms early morning before taking pred. I dislike the pred mental side effects. Late afternoon is my best time when stiffness minimal.

Prior to coronary stent about 6 weeks ago I balanced pred/stiffness/activity. Now I pace myself on all those little erratic lifting activities like carrying groceries, painting, cooking, polisihing, using spanners, but in coronary rehab found I could use gym equipment quite easily with little or no difference in pmr stiffness.

The effect of regaining some fitness has been huge increase in physical/mental energy level. With all the resulting effects on concentration, memory, problem solving, etc. I guess progression of the pmr, a few months ago on higher pred and same stiffness fatigue meant lots of doing things in small doses with lots of rests and snoozes. From early stages of having to force myself to do things I'd describe the fatigue as steadily reducing, but I also progressively lost my fitness.

For me the coronary stuff seems to have happened at a time that I could take advantage of the rehab for pmr, I don't know how others return to normal activity/exercise levels.

Relatively speaking I've so far been lucky with how the pmr has progressed in a relatively short time.

Hi Philoso4.  I guess after the first month on my highest dose, and down to about 12 I had no PMR pain.  after that there were some little niggles, but seriously nothing that bothered me, nothing that interfered with my life in any way.  At 9 I began to notice it harder to rise from a chair after being seated even for a fairly short time.  I waited longer than a week at that dose and the discomfort got a little worse, rather than better (before, the "little niggles" had cleared by the end of my week at the given dose).  So I know 9 was too low, because I was getting worse.  I went back to 10 and at that dose I had the "little niggle" but no difficulties doing ordinary things, like getting out of chairs.  And that is where I am today, over two months later, but using dead slow method my dose is now 8 reducing to 7.5.  I should add that I have been doing other things to try to reduce the inflammation in my body, including learning a lot more about nutrition although I was always a healthy eater, practising ta chi, more walking as another gently load-bearing exercise, and just recently started getting low intensity light therapy which has been shown effective for RA so I hope it will help me reduce to a lower level of pred.

With regard to pain level, I am pretty lucky in that I do not have a time of day or night which is much worse than any other time.  The worst experience I had so far was a sudden stressful situation which made me feel my body was on fire, and the next morning I took an extra 1 mg, the following day went right back to my dead slow protocol and have been fine.  I was a bit more stiff the morning after my first 7.5 dose, but that has happened to some extent at the beginning of every other drop on dead slow, and has resolved itself away by the end of the sequence.

Energy is a different matter and I seem to feel more tired these days, or maybe I am just learning to relax more and take it easy as I was, like so many here seem to be, a very active (although not athletic) person.

Prednisone. I only take aspirin or acetaminophen for ordinary headaches.  Because of a diagnosis of osteoporosis I am in the process of working up a proper supplement regimen for that which will include calcium hydroxyapatite, vitamins K2, D3, A, E.  I also am taking liquid iron for low ferritin level, but hope that won't go on for long.

I hope I covered everything.  I feel like I just wrote an essay!  

Your turn now!

I define "stiff" as some difficulty in moving because it hurts.  Also my highest dose of pred was 15 mg, early in June.

Right, anhaga, I'll take my turn. Thanks for your description.

Especially thanks for your definition of stiffness. I'll use your definition.

I'll also translate my dosage to prednisone dose. (Prednisolone 4mg is equivalent to prednisone 5mg.) My current dose is 17.5mg prednisone. I plan to reduce this weekend to 15mg, so I have some time ahead before getting to your level. 

I have stiffness for an hour or two after getting out of bed in the morning. Picking up a twenty five pound stack of newspapers from the floor is painful. I need to be somewhat careful on standing from a sitting position, but the small pain is quite bearable. (Obviously I would prefer no pain at all.)

My primary reason for wanting to lower the dose relates to energy level and oxygen update. I have difficulty doing anything very aerobic. I play pickleball, but I have to pause for a minute or so between points to catch my breath. I really do not like having to do that, especially since it is very foreign to what I like to think of as my usual (before prednisone) condition. I would be willing to abide a bit more pain if I could get my "fitness" back.

I am also trying some supplemental chemicals that supposedly are beneficial for inflammation. A couple of grams of curcumin a day is usual, but I cannot say whether it is beneficial. My wife likes to cook and provides a really well balanced diet.

I've been diagnosed osteopena so I'm supplementing with calcium/vitamin D. I also eat yogurt regularly.

I also experience muscle cramps in my feet regularly, so I take 100mg potassium a couple of times a day. Don't know for sure that it helps, either. 

I have read a book called, and I will not capitalize because I don't want to get censored, vitamin K2 and the calcium paradox.  There is a lot of info in the book and unlike some it doesn't lose credibility by trying to promote certain supplements or exercises.  The basic premise is that for calcium to be absorbed into the bones where it belongs, and not deposited on the walls of our blood vessels where it doesn't belong, Vitamin K2 is essential/.  It has been virtually eliminated from our diet through factory farming and feeding animals grain rather tha grass, so most of us will have to supplement to get it.  We also need to make sure we have adequate supplies of vitamin A (not beta carotene) and vitamin E. Apparently it is only within the past couple of decades that wehave learned how important K2 is (as opposed to K1 which has little help for the bones) so I don't imagine our doctors whose nutritional educationis woefully lacking will know much about it.

Philoso4, why do you have a 25 lb stack of newspapers on your floor?

Thanks for the information on K2, etc. I'll look into it.

We live in a high rise condo of 120 units and the newspapers are delivered to the lobby in stacks. I could wait for them to be delivered to our door but I'm out of bed before 0530 and they don't deliver before 0700.