PMR and Excersize - Experiment in Progress

Well done, Nick.  Your comments about carbs - I have reduced my wheat intake because the refined white flour did seem to be problematic for me, and generally cut back on any grains, but haven't eliminated anything entirely.  I think if there are no real reactions to various whole foods it's a good idea to keep eating at least a small amount of them.  Grains are such a good source of B vitamins for example.  The secrest, for me at any rate, is eating as much organic and/or local food as I can, and a wide variety, particularly of vegetables.  

Looks like you are on the high road to recovery! 

one of my "secrets" is rice steamer... Besides white rice, my wife puts small amount of whole rice, 30+ different kinds and steam them all together...As far as ingredience that's it, water and rice, no preservatives and it is steamed fresh for each meal.  That is my main source of carbs. 

As far as recovery, one of the main things I worry about is reducing pred too fast.  My rheumatologist is pretty agressive and probably  will ask to reduce more on my next appointment, in 2 weeks.  Reading around this and other forums on PMR, I have learned that 5-8mg is a "danger" zone and should be approached carefuly.  I will probably try to reduce as close to 5 as possible and then stay at level or in that zone for longer period of time, maybe 6-9 months and then try to move lower.  It all depends how my body reacts.

Nick, I've been posting on the HealthUnlocked site about low intensity light therapy I've been getting.  I've reduced from start at 15 June 2015 to nearly 5 currently (March '16).  I can't quite believe it myself, but there it is.  I keep expecting to have to slow down, currently using the dead slow taper, the 4 day version. Only stutter was at Christmas time when my therapist took time off and I was starting to reduce to 6.5. (I had started with the therapy when reducing from 8 to 7.)  Once the sessions started again (twice a week) I was able to carry on.  It's still 1 mg per month, and because of what I read here I'm very careful to pay attention to symptoms.  As I've reached the top level of the therapy we'll soon be reducing the number of sessions and it will be interesting to see how it goes after that.  

I am glad that you are doing fine too and experimenting with alternate methods. Will read up on low intensity light therapy, since I have not heard about it until you mentioned it. 

Nick, this all sounds very impressive and well done. You say you are reducing from 9-8mgs and feeling some symptoms. I only ever reduce by .5mgs and for me that makes all the difference, perhaps that's something you could try.

i noticed that when I was on the higher doses i suffered no adverse bodily reactions to my exercising or work duties. As I lowered and now I am on 5.5mgs I do notice that when I exercise or doing anything strenuous I do experience pain. Presently I am decorating and at the end of each day my arms, shoulders and neck hurt a bit. They are OK in the morning. I don't know why this is and I definately don't think it is a flare. I think that possibly over my 2.3year journey of pmr and preds my muscles have wreaked and now that I'm exerting more it is more noticeable. However, having said all that I hope that with each day's exertion they are getting that little bit stronger. All the best tina.

Tina, thanks for advice.. My next reduction will be 0.5mg.  For this one I was thinking I can still get away with 1mg taper.  Time will tell... I have been on pred therapy only since December, so 5th month.  My rheumatologist is agressive as far as reduction, but on next appointment (in 4 weeks) I will talk with him and negotiate slower taper. By that time I will know if I can stay on 8mg or have to go back up..

Decorating is pretty strenuous work, especially if you have to work and hold arms above your head. I agree with you that muscles are weaker after PMR, especially if you have not used them. Mild areobic activity and weight training is probably necessary, as hard as it is, to maintain muscle mass, or at least prevent a loss. This is the only reason I am putting so much effort, so in the long run I dont become so weak that I cannot take care of myself or even immobilized.

The pain I have is not strong, easy to tolerate. It is at the same level as exercise pain, except it does not go away in a day or two. It is there lingering, so I know it is not from exercise, but from mild inflamation. 

I'm using dead slow nearly stop taper, going down by .5 mg, but midway, when you get to the place where you'll be having old dose two days in a row I have started dropping a further .5 mg, and making my "old dose" the original .5 reduction.  Worked going from 7 to 6, and 6 to 5.  I always go by my symptoms, and I'm just barely dabbling toe in 4.5 waters so I don't know if I'll be able to carry on with this method from now on.  But it's something you might keep in mind if you are about to slow down your taper.  You still get there in the same time.  Now I do make sure to stay at my new level for more than a week, sometimes longer, before attempting another taper.

I like the fact that everyone has their ow version of DSNS .  It is good indication that our spirits are still alive and kicking.  I do have my own version... short 16 day version 3 old 1 new, 2 old 1 new, etc... this gives me a chance to do 2 cycles in one month, and in each cycle I could reduce by 0.5mg. 

I don't think details are so important, as long as you monitor overall body response to the taper.  I definatelly will be doing it slower now that I am close to physiological dose.

I also find that it is more about my response to a reduced dosage than it is about the mathematical pathway toward the lower dose.

When the weather is good, and I'm more active, I can often make a relatively big drop in one go. While in the winter, I can't really consider any reduction at all unless everything happens to come together in terms of diet and exercise.

I've been testing a reduction from 3mg to 2mg/day about every other day for the past week, and with no big flare-ups.  While last week, I had to bump up to 4mg/day from 3mg, just to control my alternately aching right shoulder and left hip, this the apparent result of too little exercise and a couple of heavy restaurant meals.

It's those days when I can get in three hours of solid exercise or landscaping work that I seem to get by with a smaller dose, assuming that I don't indulge in any heavy snacks or restaurant foods.

I think that everyone with pmr should keep an eating diary going, so as to correlate flaring symptoms with particular types and quantities of food.

Perhaps include an exercise diary as well, the better to map out all of the causes and their effects.

I saw both my rheumy and my pcp last week for the first time in two years.  My rheumy prescribed daily 400mg of Plaquenil (I haven't acted on this) while my doctor recommended avoiding grain foods like wheat and corn, suspecting that the long-term storage of these grains taints them with molds which might cause or aggravate pmr.  I am now limiting my grains to oats and sprouted wheat that isn't subject to such silo storage conditions.  So far, so good.

Dan I have noticed that after moderate, (recovery level) exercise most of the discomfort or pain is gone. For example, if I had some pain in my shoulders, after swim session it usually will be gone and I would feel more flexible and relaxed. I attribute that to increased blood flow thru the area that brings nutrients and washes away waste products from the muscles, so they feel refreshed.

I have not found much correlation between food and PMR. I guess it is all individual, as well as dependent on what our diet composition is. The only change I have seen is that my stomach is more sensitive to oily food then before, probably because prednisone irritation of the lining of the stomach.

I have not changed my eating habits and I really don't skip any food, and certainly do not avoid carbs.  I would say that 60-70% of my intake is carbs, in a form of rice, bread and lots of cooked or fresh vegetables. We don't eat out much, mostly home cooking. ( I hate eating in restaurants, had enough while traveling for work).

I try to keep log of time I took medication and the dose as well as if there was any unusual symptom(s). Nothing fancy, simple and short.  I take that with me to appointment with rheumatologist, so he gets more detailed update.

Glad things are going well with you ( 3hr workouts hey), but don't quite understand why would you add another med, if prednisone is working. At the low level you are, I would assume there would be  no side effects.

Oh I forgot to mentioned... Yesterday I went up 1mg ( to 9mg for just one day) to help recovery from yard work and today by late afternoon most of the tenderness in arms is gone and I am back to 8mg dosage.

Glad to hear you are still managing your pmr toward a comfortable-enough reduction in prednisone dosage.

I am solid now at just 2mg, split dose, 1mg at 6-7pm and 1mg before bed.

I am exercising at least a couple of hours daily, now doing more "technical" mountainbike riding (abrupt, steep, undulating terrain) on a whopping 45-pound bike, which involves more of the entire body exerting higher forces.  I am finally managing to avoid hip and shoulder pain while doing this (along with my now-daily pull-ups), which encourages me to be more active and which signals that a further reduction in dosage is not far off.

It is the time of year for me to do this.

I still feel that there is a strong metabolic correlation with pmr activity, seems that the more-lengthy workouts blunt inflammation more effectively, and remembering that it was a December 2013 cold spell which kept me indoors for three days that brought on my pmr in the first place!

So as part of the metabolic fix for my pmr, I am also trying harder than ever to limit my intake of any unnecessary calorie-heavy foods, which has me sleeping more soundly.

I still haven't gained back any of the weight, even as I have built my strength back up to nearly where I left off 28 months ago.

Enough about me for now. I hope your own regimen continues to maintain steady progress as you are moving quite well along already.

 

Although my weight isn't piling on as such, it is at the top end that I was pre PMR. Trouble is it used to be a lot more muscle that fat.

Got a bit of a shock today, shaved my beard off this morning (first time for years) guess what? I've got hamster cheeks. Will be growing the grey old man beard again pretty pronto. ;-)