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Flair up

Posted , 18 users are following.

megangrammy
megangrammy

Hello everyone 

Looking for expertise of you all. Was down to 1mg of prednisone and trying to taper off. Must have been too fast or stress of life but had a flair up. Of course I thought it was hurting myself in Pilates. Suffered shoulder and neck pain plus a dull headache but only on my right side for 3 weeks which just kept getting worse. Anyway after acupuncture, massage made it worse my Dr. said 20mg Prednisone for 3 days. Pain headache gone. So it was a flair. My question she now wants me to stay at 20mg for 4 more days then drop to 15mg for a week then drop to 10mg for a week and then we talk. She called off the MRI ‘s she had scheduled. I hate that I have to go back up on the Prednisone. It was so hard to get below 7mg. Now I feel like I have to start all over but the great part of the Prednisone is the pain is gone!!!! I was just hoping for some wisdom. I have only been dealing with this since diagnosed Nov. 2016. Thanks, megangrammy

0 likes, 13 replies

13 Replies

  • rapha
    rapha megangrammy

    Posted

    Me too...after 3.5 years the day before I was to drop to 1 mg I was put back to 15 mg I was distraught!! That was February now on 11mg. Tried to get to 10mg but the pain came back. We will get there so sorry for youx

  • lodgerUK_NE
    lodgerUK_NE megangrammy

    Posted

    Your GP needs to arrange a Synacthen Test to see how  your adrenal glands are doing.

    Out it in your search engine and read up on it.   Remember how you have to carry your Blue Steroid Alert card with you for one year after you come off pred.   That is because it can take up to one year for those glands to become fully functional.

  • nick67069
    nick67069 megangrammy

    Posted

    From what you describe, your PMR is still active and 1mg dose was not enough to manage the symptoms. You needed higher dose and as the time went by, inflammation accumulated and thus doctor  prescribed higher dose (20mg). Maybe 5 or 10mg would have been enough, but it is only speculation at this point.

    Please take this as an opinion, not as an advice. I know that if you increase the dose for a week or so ( less then 10 days) you can go right back to  your last "good dose", which in your case might be whatever you had before 1mg ( my guess is 1.5 or 2mg). If you did not have an issue with headache, I would say go and try 3-5mg, but with headache, don't know... It might have been stiff neck that projected pain on one side of the head, but again just guessing. You did not mention if you have GCA or PMR.

    If you decide to reduce directly to lower dose, please stop any hard activity ( like Pilates) and pay close attention to your body responses/changes.

  • EileenH
    EileenH megangrammy

    Posted

    To be honest - many rheumies would suggest adding 5mg to where the flare occured. Not for us to say of course - but if it were me, I'd drop straight to 10mg now and see if you are OK there - you can go back up if it doesn't work. You shouldn't have any withdrawal problems after just a few days. And then work from there. If 10mg was still really good I'd try 5mg. Again, you can go up. 

    You wouldn't be the first person to discover that 2mg (or even 1mg) was holding the inflammation. You don't say how often you were reducing - if you were going even slightly too fast then the drip drip of left-over inflammation may have built up over several weeks so it is a bit difficult to tell where you crossed the line between enough and not enough. So 5mg would be a good place to try I think. 

    Below 5mg is a very low dose - and isn't causing problems for the long term. If your red line for PMR was 2mg you will be able to reduce to there again - just don't push it because as you have seen, it often means going back to a high dose again and wasting all that hard work! But it sounds as if your adrenal glands should be working again and that will make the next taper easier.

    • jenny758
      jenny758 EileenH

      Posted

       I’m in the same situation   I am in my third year with PMR I had gotten down to 2 mg pred. had a flare recently. jumped 10 wasn’t enough we went to 20. my legs are OK at 20.I can walk and move without pain I’ve been on 20 for 3 weeks. my arms are still painful but I’ve been toughing it out since I can walk without pain. listening to you with the drip drip analogy I question my wisdom of not upping further. Mild pain had come  back while on 2 mg but  I was just toughing it out until it got to the point that my thighs were so painful.  set me back to the beginning.  tough lesson learned.  My dr. Is okay with me adjusting the dose as I see fit. Wondering from this forums experience what the opinion would be.  Should I up 1 mg  at a time or should I start with a bigger jump in my pred Until my upper arms don’t hurt?  This forum has really helped me.  Just knowing others understand.  Thanks to all.
    • Anhaga
      Anhaga jenny758

      Posted

      Perhaps what you could try is to cut back a little on your activity, or pace it differently - a couple of shorter walks rather than one long one, for example?  
    • Michdonn
      Michdonn jenny758

      Posted

      Jenny, we are all different, I try to listen to my body, as soon as I get any PMR pain I increase my dosage. I would rather error on the safe side; too much Pred for a few days. I never decrease my dosage if I believe I have any PMR pain. I am very active skied all winter and now riding my bicycle, so I must distinguish between exercise pain and PMR. It normal to get some discomfort after new or increase activities, we must try and distinguish what is it is. This PMR journey is no picnic, try and stay active, positive and smile. I know it sounds crazy, but I do believe it helps. ☺️
    • jenny758
      jenny758 Michdonn

      Posted

      Thanks for your response. I do stay positive and I know that helps with this journey.  I am 59 and a teacher. I am very mindful of my movements especially my arms as quick movements cause pain ( such as passing out papers I have to do this slowly.) Currently I don’t exercise at all but as the weather warms I hope to begin walking. I will ease in to it. through the past 3 years I have learned to tell the difference between pmr , arthritis,and activity pain.  I think I’ll up my dose 1 mg at a time until the arms are ok  have a wonderful day! 
    • EileenH
      EileenH jenny758

      Posted

      I'm really not sure you should be going much higher than the 20mg, certainly not without discussing it with your doc again unless he thought the 20mg wasn't enough already.

      Most experts suggest adding 5mg to where a flare occurred but that is really only when the flare was due to overshooting the right dose and then ignoring the resulting flare in symptoms. Of course if it is a new episode of the PMR kicking off it is a bit different. 

      Are you resting and not over-using your arms? It is so easy to fall into that trap when you suddenly feel so much better.

    • Michdonn
      Michdonn jenny758

      Posted

      Jenny, I give myself a good bump not a mg. When I had my bad flare a year ago, my Rheumy didn't want me to increase too much, so I ended up at 30 mg for 6 weeks after being on 7 mg. I feel we chased the inflammation up over a number of weeks. I would use the smallest increase that gives you relief for the shortest period of time. I now tapering to 7.5 using DSNS method. I am not rushing, I have had a couple of minor flares on the way down, but nothing major. Listen to your body, up and down as quick and short as possible. I normally split my dosages, which probably makes it a bit easier. Smiling ??

  • Guest
    Guest megangrammy

    Posted

    Hi,

    I had a flare up when I tapered down to fast the first time and got back on 5 mg. The 2nd time I was more careful and it took me 3 months to go from 1mg to zero, but I am on zero since last September. DSNS modified and with 0.5mg steps. Additionally I took and still take Tumeric as support.

    Pilates and YinYoga always helped and helps me, but only up to1h per day and nothing else. You have to find your dose there too.

    Meanwhile I can do 1h Pilates or can run max. 5 miles with stretching afterwards without having pain. My body is still not there where I was before PMR.

    Nick already mentioned, what would be a good option regarding the Pred dose.

     

  • Michdonn
    Michdonn megangrammy

    Posted

    megangrammy, sorry to hear of the bump in your journey. Couple of things; we must learn to listen to our bodies, tell the difference between over do excessive active and a flare. One of the things I have learned, if I think it is a flare increase my Pred immediately for a few days. I never decrease my dosage if I have any PMR pain. The longer you wait increase your dosage, the larger the increase. I would decrease slowly at the point, listen to my body being very cognizant of any PMR pain. Good luck on the rest of your journey. Think positive and try smiling. ☺️
  • Anhaga
    Anhaga megangrammy

    Posted

    Similar experience last year.  I was at 1.5 and an attempted taper to 1, supposed to get to zero as my doctor didn't renew my prescription and said, use up your tablets and see what happens.  At the time I felt very well.  After attempting to go to 1 twice (my mistake, that second attempt) I went back to 3 for a while, and eventually had to go to 7 for about a week.  I dropped quickly back to 4 but slowed down to DSNS then, and it's been about ten months or something like that and I'm back to 2.5 and apparently stuck here for a while.  I still do not feel as well as I did before that flare.

    My doctor had apparently forgotten that way back in the beginning she's said that some of her PMR patients keep a supply of 1 mg tablets on hand even after they've weaned off, just in case they need an occasional dose!  Anyway we both learned our lesson and I now have a limitless supply of 1 mg tablets, at least until the prescription expires.

    The lesson I've learned?  If you have a flare, treat it promptly. and be careful when getting close to what you thought was your old best dose.  If you've flared, that old best dose wasn't quite enough.  

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