Just had my first flare....What to do now?
Posted , 13 users are following.
Diagnosed late April, 2018, and prescribed 10 mg Pred by rheumatologist. She said she was going to let me self medicate and try to get down to 7 mg by end of September. I had not read about the DSNS method, unfortunately, and tried my own.
Everything was fine until last week. My neck started hurting on left side and
pain became a little worse every day. It never occurred to me this might be a symptom of a flare and attributed it to pinched nerve.
Yesterday, pain was intense, so went back up to 10 mg (from 9 mg). Woke up this
moring and it was still worse. Took 15 mg today and am feeling some relief.
My question is, what do I do now? Should I do another 15 mg tomorrow (if I'm pain free by then)? If I do, how should I go about getting back down to original 10 mg?
Love finding this group! So many people willing to share their triumphs and tragedies.
I can't tell you how much time I spend on this site reading. ;-)
Thanks so much for any input!
0 likes, 13 replies
Anhaga MartiFL
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MartiFL Anhaga
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Thanks for your advice.
Much appreciated.
patricia38799 MartiFL
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amkoffee MartiFL
Posted
Your doctor really started you out on a very low dose. I think most people are started out at 15 to 20 mg. But you're saying it did control your pain initially at the 10 mg, right? I don't know what to say because it doesn't sound like a flare to me. It sounds to me like you've still got a lot of inflammation that you need to flush out before you can really start a taper. I'm sure Eileen will come on and give you some great advice. This process can take a very long time or it can be short but I think your way early in thinking that you could be done by September. That is crazy talk.
nick67069 MartiFL
Posted
Let's hope it is a flare. You would need to "flush" the inflammation and it can be done with higher dose of pred. Now this is important : As long as you don't stay on higher dose more then a week ( 10 days max), you can go back to your previous dose ( 9-10mg) directly. In your case, it seems that 9 mg was not quite enough, so maybe 10 mg is better. I would stay at 10 for at least several weeks before attempting next reduction.
Pred does not cure PMR, only manages symptoms, thus you need as much pred as to remove and prevent inflammation. Dose is individual and it can change over time. Keep in mind that average PMR lasts almost 6 years, so rushing to reduce pred makes no sense. If you reduce it to far too soon, you will eventually have to increase the dose to prevent or mange flare. So take it easy.
MartiFL nick67069
Posted
Thanks, Nick. Have just heard back from my rheumatologist who advised me to go back down to
10mg and stay on that dosage for several weeks, then try again to reduce.
I have noticed that being on 15 mg daily is giving me the shakes. At first, I thought it might be low
blood sugar, but, I've eaten enough that it cannot be the case. Is this something others have noticed?
My son is a type 1 diabetic, and I am hypoglycemic, so I know very well what low blood sugar is.
Have been on 15 mgs for 5 days now. I think I will cut back to 12 tomorrow, then 10 the next day and see what that brings.
Thanks very much for your input! I hope you are right about fewer than 7 days (or so) being okay to reduce back to original dosage.
Marti
EileenH MartiFL
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Anhaga MartiFL
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Are you on a low salt as well as a low sugar diet? Try adding a small amount of salt to your food. I actually discovered through a series of happy coincidences that I really need more salt, having added only minimal amounts of salt to cooking, and none at the table, for many years. The way I judge if I need more salt is to taste a few grains. If they taste disgusting I'm okay. If the salt, on the other hand, tastes okay then I need more. The more salt I need, the better it tastes and as soon as you've taken in enough it quite suddenly tastes awful! Since starting this about six weeks ago I have generally had more energy, and no longer wake up with a headache which had become quite a regular thing over the past few years, and much worse lately.
Prednisone does have a deleterious effect on one's electrolyte balance, so I suggest this as a very safe way of testing if it might be part of your problem. If it works, much better than adding more medications. If you do end up taking more sodium, make sure your diet has enough potassium in it as well, quite easy to do. Btw, potassium supplements are not necessary and should never be taken without a doctor's direction anyway. In case you are wondering, as this problem was developing, my blood pressure had started to increase. It eventually got to the place just below the red area on the chart. This is after a lifetime of low to low normal readings. Since taking in more salt blood pressure has gone back to my usual low normal and I've not had a single unexplained morning headache.
And just a bit of context: after I'd been on pred for about a year I started to get a bit shaky and had spells of feeling I wasn't quite there, not really dizziness. My doctor wasn't worried about this. At that time, not receiving any medical advice, I experimentally added a little more salt to my diet and it helped, but apparently not quite enough.
Anhaga
Posted
Oh yes, when I had the odd sensations a couple of years ago, I also felt my heart was beating irregularly. Again, the doctor wasn't worried. This did go away. So even the tiny bit of extra salt I started consuming at that time (a sprinkle on morning eggs) was enough to help and I never notice that funny fluttering sensation any more - something which I'd noticed long before PMR/pred, btw, but it got much worse. I assume it was the salt which helped, nothing else changed.
EileenH MartiFL
Posted
In my opinion, a good start would be to use a sensible starting dose - and that is more than 10mg! The aim of the starting dose is to clear out any existing inflammation that is stll lurking. If you don't, while you may feel OK at 10mg, as soon as you try to reduce the dose you get below the threshold where symptoms return very quickly.
There is another thread where we have been talking about weak points and ease of pulling muscles when we have PMR and are on pred - the actual cause of the symptoms we call PMR is an underlying autoimmune disorder which makes your immune system attack your body in error - and it leaves your muscles intolerant of acute exercise and prone to injury with far less cause than you are used to.
I'm not sure the neck is entirely PMR though - it sounds as if you have wrenched your neck or it could be myofascial pain syndrome raising its head. It often makes shoulder and neck muscles tight and painful it used to be a real problem for me.
Any while the 10mg may have apparently been enough to start with - you are already 5mg closer to the dose you will be looking for in tapering: the lowest dose that manages the symptoms as well as the starting dose did. You have only been reducing for less than 2 months - and seem already to have had flares due to lowering the dose. Most doctors leave their patients at the starting dose for 4-6 weeks - and use a higher dose.
MartiFL EileenH
Posted
well, that boast has come back to haunt me. Big time.
Polymyalgia
rheumatica
prednisone
tapering
flareups
these are words that were not even in my radar. Now they precede almost every sentence.
I just have to thank thank my stars that we have the internet available today. Am learning new stuff every day and hope it will help in my—and our—journey through PMR and related consequences. I can’t imagine trying to manage without support groups like this one,
Three days now of 15 mg prednisone and not even a little relief from neck pain. Will call rheumatologist tomorrow and see what she recommends.
Thanks, Eileen, and all of you whose posts I love to read. It makes
this process seem do-able, in long term if not in short term.
Hugs.
Marti
EileenH MartiFL
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alley2 MartiFL
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