New to PMR concerned about the prednisone side effects

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At 56 I came down with this condition.  Quite active with biking and paddle surfing.  Not being able to rollover in bed in the morning with out serious pain was a shock.  The prednisone has helped around 80% after 3 weeks, 20 mg.  Looking to reduce dose Asap to limit negative consequences, diabetes, etc. etc   Not sure my doctors (GP) are familiar with this to any degree.   Thanks to everyone for shareing the journey.

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  • Posted

    I was in the same boat at age 53, three years ago.  I started at 20mg only as a 2-week test dosage for diagnosis, then started a 15mg taper based on my now-reduced body weight of 140lb.

    You will become familiar with the cause-effect of altering your dosage.  I never medicated myself to 100% relief of symtoms, only taking enough pred to prevent loss of sleep, to prevent redness/swelling in my thumb joints, to prevent nighttime ear-ache and to ease any sharp, transient bursitis flare in my shoulder or hip.

    Keep cycling daily if possible, as I did.  I recommend exercise early in the day and to do mild jogging in the evening for at least 15 minutes as soon as your condition and medication level allow this.  The daily approach, at lower, tolerable durations and intensity, definitely seem to keep me from waking with any "flare" of symptoms.

    I also avoid heavy foods, especially sugar and starch as in cookies, crackers, bread or candy. I tolerate good cheese well as a snack but have small pieces and quantities which I eat slowly. This keeps me from craving the bad stuff like flour tortillas, chips and th like, which my primary physician (osteo) warned me of.

    The body's systemic inflammatory response, and thus the symptoms of inflammatory conditions are relieved by partial fasting, for those that have the weight to lose. My rheumi suggested that I didn't have enough weight to play with, though I do notice the benefits from the fasting effect that results from my vigorous daily bike ride, and some level of symptoms typically recurs after any good-sized meal.

    I did also suffer bouts of mid-day fatigue resulting from pmr, but in my case this fatigue was one of the symptoms that did respond favorably to small increases in my pred dosage.

    I am down to just 1.75mg/day after 38 months with pmr, and have not suffered any fatigue in perhaps the last year or so.

    Good luck.

    • Posted

      Thanks for sharing, good advice.  Went paddle surfing a few days ago for over two hours, did well and was pleased I could still do it after not going out since the diagnosis.  Having trouble raising my arms over my head tonight may have over done it paddle surfing,  
    • Posted

      You will get warnings from the wise people here about over-doing exercise (weekend-warrior syndrome), and about any too-large or too-rapid reductions in your pred dosage.

      The body adapts to the smaller dosages such that even tiny reductions are noticeable when the daily dosage is already small, so it is the percentage reduction of dosage that you must consider, not the sort of "1mg per month" recommended by many rheumitologists including my own.

      Many of us get hung up roughly between 5mg and 10mg, having to stick at such a level for perhaps many months before any further reduction can be effected without a return of fierce symptoms.

      And it is not uncommon to have to adjust one's dosage upward, and then to have to return to tapering down from there at the same old, slow rate!

      If you find yourself having extreme difficulty putting on your shirt, the paddleboarding might have to take a long vacation in my opinion.

  • Posted

    At 56 Dr came to same conclusion

    30mg prednsone now at 6 mg 17 mths later

    At 16mths Dr put me on methyltrxate for swelling and aching in hands.had just taken third dose at 25mg a week

    Major heart attack

    In hospital for a few days 100% blockage in one artery

    Received stint

    Dr says do they monitor cholesteral and phones my rumy Dr

    Rumy Dr says Gp does

    No one did

    Cholesteral went to 5 supposed to be 2 or below

    Plugged up everything

    Feel better no more hand swelling or aching

    Pmr seems lower for pain

    Side effects of prednsone

    Puffy face

    Weight gain

    High colesteral

    Sweats

    Cant sleep

    Getting new rumy

    • Posted

      Thanks for sharing we really need to look out for ourselfs, cant relie on western pill pushing medicine, hope your on the mend.
  • Posted

    I was diagnosed at age 60. I had symptoms I believe for years. I was very active. I actively cycled, ran, swam and

    kayaked. I still do just not to the extent I used to do. I'm now going on year 4 with Prednizone. I am currently on 5mg. I started st 15mg in the beginning. It has been a lifesaver for me.

    I believe stress brought it on in 2011. A horrible year for me. Many people in this forum can relate to a stressful event bringing on the PMR.

    I have little side effects to the Prednizone. My weight hasn't changed, but I do get bruising and I bleed easily. My stomach also is prone to heartburn. I had a dexascan in Dec and I now am borderline osteoporosis. Some is my age of 63, I'm small boned and my mother and sister had bone issues too. So I suggest regardless if you are male or female you take Vit. D and calcium. Prednizone long term can cause bone loss. They plan to start me on Prolia, a twice yearly injection. I was to take an oral pill weekly but I have developed the stomach issues. The pills are not coated. I said NO!

    The only suggestion I have is to stay active.

    It seems to me the longer I have PMR, the more easily the flares come. It doesn't take much to set it off, especially stress.

    • Posted

      Thanks Pam, yes this year was very stressful.  I love being active and want to manage this the best I can.  Thank you for sharing!
    • Posted

      I live in Australia and was very surprised to see that enteric coated prednisolone isn't apparently available here - or if it is I haven't found any suppliers of it. This is obviously a major issue for many people - especially in the longer term and like me I'm sure injections don't appeal. I already take an acid reducing drug and have for years - gastric reflux runs in my family - but that isn't 'perfect' with tablets either. However lining my stomach (prior to taking them) with oatmeal for breakfast  (only a small bowl) seems to be helping. Like you i had the stress 'triggers' so many refer to.

  • Posted

    You've had good advice from the people who are similar to you in that you all exercise regularly. That works fine and is to be recommended - although you MAY find you can't do as much or you need a longer recovery period. Don't force yourself to do too much though as the delayed onset muscle soreness (DOMS, google it) may become far worse than you have previously experienced and can, some experts think, lead to longer term muscle soreness as your muscles don't repair themselves in the normal way. In some people it has been very long term - much like ME (myalgic encephalopathy).

    " Looking to reduce dose Asap" - don't rush, don't try to force a reduction because all that will happen is you will have a flare - and sometimes that is harder to manage the next time. The disease is still there, the pred is only managing the inflammation caused by the underlying autoimmune disorder to allow you a decent quality of life until it burns out and goes into remission. For about 75% of patients that takes up to 6 years - but men seem to do better with easier and shorter journey. 

    Limiting weight gain and reducing the risk of diabetes can be achieved with a low carb diet - take all the junk out! That is also eliminating sugar and white carbs which are very pro-inflammatory so that has an effect for many of us.

    • Posted

      I have been taking 20mg before bed so I wake up able to function to work or excersise.  Have seen three young GP doctors that dont seem to have had much if any experence with this.  Hoping to get past them to a rheumatologist referal.  Wonder if 10 mg in the morning, and 10 mg at night is a option.
    • Posted

      Rheumi's often aren't any better, though will usually have more experience dealing with pmr.

      I also started taking my dosage at 6pm, for the same reason.  I like to be able to get going earlier in the day, and so I do better with the 6pm regimen.

      I began taking it in the evening when my dosage was low however, and higher dosages may impede sleep.  Some patients split their dosage and take half in the morning at half at night, trying for the best of both worlds.

    • Posted

      I know a few people who take their pred before bed and I did for a while when I was on Medrol - it was the only way it worked before early afternoon. However - many doctors really don't like it as they insist it depresses adrenal function on the basis of a study that showed 5mg taken at night depressed adrenal function more than 15mg taken in the morning about 9am. But let's be realistic: for someone with PMR taking their pred at 9am is about as much good as a chocolate teapot! Half the day will have gone before you are any use! At doses above 10mg there is going to be adrenal suppression. One approach is to take the pred very early and settle down for another couple of hours - it takes about an hour and a bit to start working. But you won't be able to stay at 20mg for long - after about a month you should start on a slow downward taper to find the lowest dose that works for you for the longer term.

      As Dan says - rheumies aren't guaranteed to be any better than a GP! Go here:

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

      and do some reading to inform yourself. 

    • Posted

      Thanks for the feed back.  When I wake up in the morning my shoulders make some poping noises,  After a month may try to go to 15mg.  Looking for best course to lower dose.  I have about half the energy paddle surfing as I did,  Tring to excercise and do what I love with out straining or injuring my muscles.  My GP wanted me to go from 20 mg to 10mg to reduce.  When I shared the groups experences he was more open to a slower reduction, probably cause he has never seen PMR.
    • Posted

      In the replies section of that post I gave the link for you will find a slow reduction approach that has worked extremely well for many people on the forums. It has an explanation in it - but a basic tenet is not to reduce more than 10% of your current dose. At 20mg that would be 2mg, not 10mg! And that is advice from top experts in tapering pred not something a patient made up! I think 2mg is about the absolute limit - 2.5mg maybe if you are lucky once you get to this stage. 1mg is better.
  • Posted

    Hi Woodrow, 20mil was the magic dose for me too, was pain free within a day and then my Rhuemy began the taper,  haven't been the same since. I was at the 20mil for about a month, he took me down to 8 mil way to quick and refused to put me back up. Needless to say I'm at 10 mil now, lots of pain did go up to 15 the other day and was slightly better so now I'm doing the slow taper, new dose one day old dose etc. my main side effect after a year of the pred is dry eyes, funny thing is my eyes fill with water constantly but it's called dry eye. I do see a neuro Opthomologist every three months who says I should use my judgement, if I get the scalp tenderness I should immediately increase the dose to even 40 mil. It is very confusing to say the least. All I know is that. Cannot live in the chronic pain I was having. Good luck to you in your journey.

    Sharon

    • Posted

      The dry eye syndrome is probably nothing to do with the pred (though it probably can be) but to do with the autoimmune part of PMR. 

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