I'm on 20mg pred, second week now, doing better than the starting dose of 15..a few questions..
1. Does any one up their dose a bit when they know they will have a stressful or active day or long car ride? And how much..I would assume for only a day or two?
2. Any supplements or vitamin that seems to work? B complex or tulsi tea..things like fish Oil?
3. Heat treatment or ice? Massage? Anything to help a rougher day, which seems to be every 4th day for me..
4. A nightly beer helps me, nothing wrong with, right?
I'm tempted to try some light weight lifting on good days but afraid I'll really pay for it the next day..
Thanks people!!
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daworm
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I'm speaking only for me. No expertise. I do up the Pred by 1mg or so if I know I'm going to have a big big day. I think it has helped. Not sure.
I take Calcium and vit D to protect bones, and fish oil, and magnesium, and a multivitamin. Magnesium helps me with muscle cramping. I also take Omeprazole to protect my gut and vit B12 to protect my brain from the Omeprazole. I reluctantly take Fosamax to protect my bones from the Pred and a tiny dose of statin because my cholesterol shot up after a few months.
I do about an hour of exercises every day, in the morning. Not aerobic, just stretching and some muscle building, especially in my legs that got a bit wobbly with the muscle wasting effect of Pred. I'm also fairly loosely ligamented and that seems to be a bit worse on Pred. The stretching and QiGong helps keep things aligned. I also go to an osteopath once a month. Some people here have recommended Bowen therapy as being very helpful.
I find heat works better than cold on the parts that the PMR has inflamed. A warm shower is good if I'm feeling tight or achey. And for me whisky is great to recoup at around 6pm when I seem to hit a low.
Also, for me, moving around rather than being sedentary is important.
The other day kinesiology tape on my right shoulder and bicep area which were sore from overdoing a bit over the weekend really helped.
Also, best advice I was given when I was about to start Pred was to eliminate all grains (bread, pasta, rice etc) and all added sugars and all foods with added sugars. I even stayed away from sweet fruits. I wasn't 100% of course, but the change in my eating patterns helped me lose weight rather than gain weight on Pred. (there are posts here you can search for on diet and supplements while on Pred.)
These are my adaptations to the puzzle that is PMR. Others will certainly be along with theirs. I'm sure you'll find your own. Mostly accept that this is a day at a time illness, and be patient with yourself and PMR.
Excellent reply! Thanks..Like you I take the magnesium, a multi, D3, turmeric tea, fish oil and C..have taken B12 before and will probably get some..I'm probably too active on good days, not one to sit around, only now it's walking instead of lifting for an hour..so far no gut problems, dr even said I could take a small dose of ibuprofen if needed in evening..he also wants me taking a low dose aspirin..perhaps too much on the gut so I will only take the ibu when really needed..hot showers are excellent, I am going to research the tape, I see a lot of people using it..my left shoulder which I think started it all is still hurting with bursitis or tendinitis or what ever...thanks for the info!,
The newest recommendations for GCA have said that there is no evidence that the advantages of taking low dose aspirin outweigh the disadvantages of the effect on the stomach.
1. Have never felt the need to up my dose after upping initial 15 to 20, like you!
2. As a result of many posts in the last year...I decided to try a group of vitamins & minerals.....have stuck with them everyday. Magnesium, b12 (methol) vitamin d, zinc, viamin k, and turmeric.
3. Hot baths saved my life for the first 6 months at any hour of the day or night for pain and stiffness, also helping me sleep! Massage as often as you can afford!
4. Exercise, not so much (for me, anyway)! Fairly active on a daily basis. I do rest immediately when I feel tired, or I've done too much.
5. I feel I have been very lucky and pretty much live my life as I always did, just taking rest time when I need it. Occasional wine with dinner, beer with Thai food etc! Take Med's at 2:30-3:30 am...now down to 5.5 after a year.
6. Hoping your experience will be equally easy and SHORT! But as all will advise here.....don't rush, PMR will tell you when it's done!
Did you always take your meds at night, even at the higher doses...I am taking my 20 whenever I wake up in the night, never an exact time..usually between 3-5...my dr. Wants me to take them around the traditional 8am..by that time I feel like crap the whole morning...I will deal with the adrenals once I get this under control is my thinking...why hate mornings waiting for pred to kick in?
I couldn't agree more! I started taking them in the morning...but thanks, again, to this forum, I decided to try the 2-4am route and it worked for me! Sometimes the pred wears off before I go to bed..if I've done a lot that day. But once I either go to bed, or am up and moving things improve! Also, I tend to sit with the iPad too long...again, hard to get up, but once up...pain & stiffness goes away. Listen to your own body! No need to be in pain or to feel bad if there is an easy solution!! I wonder why doc insists on morning dose? Maybe he/she can learn from you!!
I'm sticking with it for now..gotta settle on which time, early like 2am or around 4..either is better for me than 8...I don't think family Dr's know much about this, I'm lucky he even wanted to try pred right away..can't blame them, they have to know a little about a lot of illnesses...I told him a few things I was interested in and he said, "I see you've been on the internet, good, I don't mind people doing that"..haha.heres a link I hope works about nighttime pred usage...it for a lower dose but should translate to the same..written for RA but like he says at the end, why not for all these diseases...hope link works..
The adrenal story is for patients on short term pred and at lower doses. Unfortunately too many doctors don't understand that the doses we are on for the length of time we are going to be on them mean our adrenal function will be compromised anyway.
A study showed that taking 5mg at night suppressed the adrenals more than 15mg taken at 8am. So, a patient on pred for a few weeks is better to take their pred in the morning. When a patient is on pred for more than about 6 weeks, there will be adrenal suppression - whatever time you take the pred.
In PMR the sooner you take the pred after the shedding of the inflammatory substances at 4.30am the less inflammation it has to deal with. I do wish doctors would see that getting the best result is what matters - not what time you take it.
I live In the states. I take RAYOS which is time released prednisone. . I take it at 10 o’clock at night and it releases 4 hours later. This has allowed me to wake up feeling great and work full-time.
I was put on Rayos from the beginning. The highest was 20mg. They don’t come in 1/2 doses So when I started getting to the lower numbers I reduced by .5. So I mixed Rayos and reg Prednisone. For instance I’m at 4 1/2 dose. So I take 4 mg of Rayos at night and .5 prednisone in a.m. I am also on Actemra injection once a week.
Never vary my dose... at 17 mg from 25 since June.
Heat, Massage, diet as previously described, supplements as recommended here, positive attitude, Tai Chi, Quigong. I have read that guys have an easier time than women. Good luck!
Some do increase dose in stressful situations, but not something that should be done too often or automatically. Maybe on the day if you feel symptoms are returning/escalating, but best to try and get through with -if possible, but it’s always a Plan B if things get too much.
I always found heat to be good, and maybe massage, but the person’s needs to know about PMR, and it’s effect on your body.
Nothing wrong with a nightly beer.
If you can do stretching type exercises or something more gentle like Pilates, yoga, tai chi even just walking it’s probably more beneficial at this stage than weightlifting- PMR/Pred muscles don’t like too much repetition - they take a lot longer to recover.
Lots of people reckon it does them good, but as I said the practioner needs to be aware of how PMR affects the muscles, and adjust the massage accordingly.
Give it a go, and see how you get on, you won’t know unless you try. What suits one person may not suit somebody else.
I use massage - even get it from a physio at my hospital, courtesy of the rheumy department! It is a life-saver for me.
If you have myofascial pain syndrome along with your PMR, massage may well release the inflammatory substances from the trigger points and the fascia - and they are the same inflammatory substances that cause PMR when they are all the way through the system, in the blood. So it feels as if you are having a flare after the massage - but it will fade as the substances are flushed out of the body.
The only way to really know is by trying - with the knowledge it MAY hurt a bit. I love my massage sessions!
I would never increase a dose solely in anticipation of a stressful day. Pred is not candy, not something you want to take more of than you absolutely need. The other relaxation strategies mentioned in the thread are a better idea in both the short run and the long run. Increases in dosage should, in my opinion, be reserved for dealing with increased activity of the disease, or in the event you need it for medical reasons. Sometimes, too, when we are tapering we may need an extra day of the old, higher dose, because of pain that could be PMR, or pred withdrawal, but this is reacting to discomfort that is present. You should not need pred to get you through expected extra activity, just a good rest or sleep afterwards, especially while you are still at the higher end of a starting dose.
Early on I learned I had to get as much rest as activity, especially as I got my dose into single digits. Better to behave like the poorly bunny you are than to overdo it and really need more pred!🐰
1) Not really - especially at 20mg which is a starting dose and should be higher than you need. Once you get below 10mg it may be a different matter.
2) Not really. Some people use garlic and turmeric in cooking and say it helps. Eating oily fish too. But not sure that just fish oils work.
3) I found cold just made my muscles worse. Sitting against a radiator in the winter helped sore back muscles - but I don't think that aspect was the PMR but myofascial pain syndrome.
4) I haven't cut my alcohol consumption. Don't do beer - but I always found a glass of wine made the PMR feel better in the pre-pred days: I think it is the vasodilatory effect.
If you do weights - start with a VERY low weight - just the bars, no weights! A water bottle with a small amount of water to start is ideal - you really can add just an ounce or so at a time. Whatever you try, don't do many reps (not more than 5 at a time) and have the next day off to see how your muscles took it. Even if you did weights before you have to start low and retrain your PMR-bashed muscles.
if i don't start feeling a bit better today and if this rain doesn't stop soon i will "upping" my alcohol intake for the day!!!! Not too much though...a hangover is not something i need to add to the mix...
In the U.P. Of Mich it's rain rain rain...hope the weather and me both are better tomorrow as we plan on going to Eagle River Wisc Cranberry fest and Arts and Crafts show...if it's sunny the colors should make for a nice ride...
Long weekend there isn't it? Thanksgiving here, Columbus day there? We'd been predicted a weekend of rain but so far so good. Hope your skies clear soon.
Not much of a weekend for many here. The roadworks on our street continue all weekend, except Sunday. As I write a big and very noisy machine is in front of our house scraping asphalt in prep for resurfacing. We did escape for a few hours and investigated a nearby trail (got my 10,000 steps today no problem) but I think they have to work until nightfall to have a chance of finishing this stage on schedule.
Had that going on all spring into summer..new water lines and new blacktop...the whole house shook half the day plus a big diesel sump pump running for a week day and night..all done now, nice new road..
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