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Stress

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paula63201
paula63201

I am to reduce Prednisone from 9 mg to 8/9/8/9 starting tomorrow and am wondering whether this is a good idea at this time. (My rheumy had wanted me to drop from 10/9/10 9 down to 8 and then after two weeks to 7.) I balked at that and she agreed to 10/9/10/9 for several weeks to 9 and then 9/8/9, etc. ). My last SED rate, a month ago, was normal and am feeling quite well. The reason I am balking, is that a difficult work situation over which I have no control and which cannot be changed, has left me in a lot of stress, so that I am not sleeping. I wake up at 1:30 am after 3-4 hours and cannot get back to sleep. I start work at 8, work full time and have a very full life, otherwise. So, should I wait until I have mentally and emotionally  adjusted to the new situation at work before I reduce the Prednisone? (Hoping I can get my hed around it fast: trying yoga and other stuff to calm down the spinning thoughts in my head).

1 like, 42 replies

42 Replies

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  • lodgerUK_NE
    lodgerUK_NE paula63201

    Posted

    Paula

    Send me a pm with your email address and I will send you two reduction plans worked out by patients for patients and they work.

    • EileenH
      EileenH frustrated61

      Posted

      The one plan lodger refers to is the one I post regularly and which I have given links to on many posts. The other is not a text version, it is an excel-style diary which it isn't possible to share on the site, even by private message. They are very similar and it is merely a case of which suits you better. That is the reason for the request for a pm with an email contact - by no means everyone wants to be contacted by strangers by email even if you do. Send her a pm with YOUR email and she will send it to you so there is no reason for you to feel left out.

      The reduction doesn't help particularly with sleep deprivation - it is just a way of reducing with less pain problems. The sleep deprivation is less the change in dose than pred itself - some people can't sleep when on pred, it's a simple as that.

  • MrsO-UK_Surrey
    MrsO-UK_Surrey paula63201

    Posted

    Paula, yes certainly hold off on that reduction until your present stressful period is over.  It doesn't take much for stress to knock us sideways when suffering from PMR and we always suggest never to reduce when we have a lot going on in our lives but wait for a week or so until we are able to give ourselves plenty of TLC for our bodies to get used to withdrawing a steroid dose.  In any case, your rheumy's advice to drop again to 7mg from 8mg after just two weeks is much too fast.  We need at least a month on each dose below 10mg, and even that is too fast for some. 
    • paula63201
      paula63201 MrsO-UK_Surrey

      Posted

      Thank you for helping me here.

      Looks like stress has to be avoided at all costs; from your and other responses here, I see that it awakens that sleeping giant called PMR!

      Definitely not reducing at this time. 

  • erika59785
    erika59785 paula63201

    Posted

    Hi Paula,

    I found stress is the worst with PMR and it can cause flares.  I noticed it recently when I had a lot of company.  I was tapering down at the time.....and now I am stuck with backpain and had to up my prednisone to a much higher level.

    Thought to share this with you.

    Erika

  • Bababoyd
    Bababoyd paula63201

    Posted

    If your numbers are good and you an drop it is good, if you start feeling pain again let them know.  Sometimes they can back, but less pred. to get the back under control.
  • EileenH
    EileenH paula63201

    Posted

    I have just read a post from someone else whose rheumy was appalled at the idea of her reducing her dose without sitting at the new dose for at least a month! So I know what that rheumy would say to your rheumy! That is far too fast - you are not giving your body any chance to adjust to the reduction and anyway even if your blood tests are normal and you have no symptoms that is as likely to be due to the pred as to the idea that the PMR might have gone into remission. I fail to understand why so many medics don't understand that - there are two sorts of remission: one is drug-induced and you cannot tell if the PMR has gone away as long as you are on pred. That is why you need to reduce very slowly. If the PMR had gone away you could reduce faster if all you needed was for your body to get used to a lower dose and stop. You are still looking for the lowest dose that controls the symptoms - a very different matter. If the dose is only just enough to control the inflammation and you reduce it further you have to wait to see if you are still OK, not reduce again. Over the last few months I have reduced from 5mg, where I was fine, to 3mg. Each reduction takes me at least a month, and I stay at the new dose for a few weeks between. I was great on 3mg for at least 6 weeks and then I got a stinking cold - and since then I have started to get twinges in my biceps. I tried 6mg 2 days ago and was fine yesterday, last night I tried 5mg and am just getting twinges now. It looks as if the 3mg or the cold was too much - and I have a bit of a flare despite my patience :-(

    To go back to you - if you are under stress the last thing you need is try a reduction, especially at this level which is around the physiological dose, what your body needs to function normally, never mind if you are under stress. Many doctors recommend taking a bit MORE not less when you are stressed. So yes - no reductions at this point! We often recommend clearing the decks and cancelling anything you possibly can the week of a reduction to give your body the best chance. That's obviously not an option  - so no reduction. 

    • paula63201
      paula63201 EileenH

      Posted

      Hi EileenH,

      Thank you for your advice and sharing your tapering experience. I have also studied the reduction schedule that you refer to, but your personal experience is exceptionally helpful.

      The stressful situation will not be abating any time soon, I will just have to learn to adjust my mental and emotional response to it and hopefully get some sleep. 

      My prednisone reduction was interrupted this summer, when I had to go on a much higher dose of Prednisone due to a mysterious skin condition that never actually got diagnosed, just treated with Prednisone, 60 mgs for 3 days, then 40 mgs for 3 days and then 20 for 3 days and then back to 10, where I had been. I then went on a schedule of alternating 10 one day and 9 mg the next, for about a month. (a 1/2 mg reduction)

      Three weeks ago, I started 9 mg (although the rheumy wanted me to go down to 8 after 2 weeks.)  I had been feeling pretty good, except for the stress and ensuing insomnia), although today, for the first time since being on Prednisone am feeling that unpleasant and familiar pulling and tightness in the tendons of the thigh muscles where they attach to the groin (some of my PMR symptoms of a year ago).

      Am definitely not reducing from 9 mgs. Since I am having this symptom, I assume that the PMR is still lurking behind the Prednisone, and either the stress is calling it out or my body is reacting to the reduction. What you say about the two sorts of remission is especially of interest here. How can one tell which is which? Is it OK to feel the twinges and pulling in those tendons/ligaments? Shall I wait a week or two to see if they abate and that will mean that my body has adjusted to 9mg and if not, go back up to the 10/9 mg alternating daily? 

    • EileenH
      EileenH paula63201

      Posted

      If it is just the lower dose the twinges should improve within a couple of weeks, if the dose is too low it will probably increase - not necessarily a lot, the bicep discomfort I had was minimal and it is possible it was when I carried a couple of fairly weighty (for me) bags!

      The only way you can tell  if the underlying autoimmune disorder has burned out is to keep trying to reduce the pred dose - but in tiny steps so you have less likelihood of confusing steroid withdrawal and returning PMR. And you need a bit of time between drops to be sure you haven't got to the point where the inflammation is starting to develop again - the autoimmune bit is always there in the background until it burns out. The pred does nothing to change that, it is just clearing away the inflammation the autoimmune part is causing. Like a dripping tap - there is a small splash of water, you wipe it away, if you stop wiping it away the puddle will get bigger.

      Have you tried any complementary therapies to ease the pain in your thigh? I and several others on the forums have found Bowen therapy has a brilliant effect and for me so did sports massage - though you have to be careful with massage in PMR, anything too heavy can hurt the muscles. 

    • paula63201
      paula63201 EileenH

      Posted

      You describe the 'is it twinge or PMR' issue very well. The dripping tap is a really good analogy. Thank you for that!

      I have tried a number of things for underlying inflammation and stiffness. I was not familiar with Bowen therapy, but looked it up and it looks helpful.

      I went for massage for the pain before I was diagnosed with PMR, but it  was not helpful at that time, but also not targeted. I have an Iyengar yoga routine I do daily at home when I first get up and among others, work on the shoulders and thighs and this keeps me flexible and pain free for the most part. I think getting blood to flow to the tight areas is key. I also walk and try to work standing up some of the time.

      I have been seeing an acupuncturist for reducing inflammation, and she targets specific issues I might have as well. This is helpful.

      I was taking fish oil, but the skin problem I had was not diagnosed, so was not sure if it was a seafood allergy, so I stopped, but have had clam chowder since, and no problem, so am ready to try it again. I used it for about 9 months with no problems.

      Two supplements that are recommended for inflammation and I have not used are Enzyme COQ10 and Bromelain. I am leery of using supplements, as it is never clear what side effects they might produce, on the other hand, they might be helpful. Are you familiar with these?

       

    • EileenH
      EileenH paula63201

      Posted

      I sort of did Iyengar yoga in a class at my gym and it, together with the Bowen and Pilates, kept me mobile for the years the PMR was not too bad. I say sort of because it had to be adapted quite a lot! If only I were as disciplined as you! And yes - getting the circulation going is key, warmth helps to to vasodilate as well. I could move when I first got out of bed - for about 10 minutes! If I hadn't got dressed by then I was in trouble! But using an electric blanket BEFORE getting up has helped a lot of people.

      I was at an international meeting about mitochondria (the powerhouses of the cells) a couple of weeks ago and I'm sure they mentioned the role of CoQ10 in mitochondrial disease. It isn't my field - I must do more reading! Don't know anything about bromelain (yet) - but for many supplements it is a good idea to check with the pharmacist whether they are OK alongside prescription medications (or any other if it comes to that). Some don't mix well.

      Have I asked before - where are you?

    • ptolemy
      ptolemy paula63201

      Posted

      I believe Bromelain is found in pineapples and I have heard several people with PMR saying they eat a lot of pineapple as it is supposed to help. 
    • EileenH
      EileenH ptolemy

      Posted

      I knew I'd heard of it - as a meat tenderiser! It certainly shouldn't be used by anyone on anticoagulants as it will mess the up the blood clotting. It does say "Bromelain has been found to reduce the excretion of proinflammatory cytokines" - so I can't see how that would help in PMR: the stiffness andinflammation is due to inflammatory cytokines, you'd surely want to get RID of them from the body. It also needs to be taken with 2 other substances to be effective, trypsin and rutin. 

      There's no evidence that supports its use - but I suppose if you like pineapple...

    • paula63201
      paula63201 EileenH

      Posted

      Had not thought of an electric blanket. Did use a heating pad for a while (a little too small!!).

      Disciplined? Ha ha. Truth is, if I don't do it first thing, I let the time fill up with other things. Yes, Iyengar yoga can be adapted and teachers at Iyengar centers are trained in this. There are three Iyengar centers in the DC metro area, where I live, but can be found in many cities in he US and internationally. Since it is taught level by level, one can usually find one's level at any center and the teachers are trained in the same way. I am sure you know, but not advisable to work above one's level of strength and flexibility.

      Really great to have your sceintific input! Thank you.

      Where are you?

       

    • paula63201
      paula63201 EileenH

      Posted

      OK. Forget the Bromelain. I'll use it on cheap steak, instead.
    • EileenH
      EileenH paula63201

      Posted

       I had a lovely Spanish yoga teacher - she also did the hardest acqua class I went to but she was brilliant about adjusting stuff for me. She should have been a ballerina! That was in the north of England at the gym I belonged to - all included for an off-peak membership of £30 a month or so. I now live in northern Italy - and gyms are machines in a room and very little aesthetics! And it costs a BOMB! No chance for a pensioner :-(  It's expensive because all the locals just go out and climb mountains or ride bikes up and down them ;-) Which PMR doesn't really encourage does it?

      I enjoyed my day-trip to DC a few years ago - we stopped for a look on our journey from  a meeting in Cleveland to visit friends in Toano, Virginia. The White House visitor centre was fantastic!

    • EileenH
      EileenH paula63201

      Posted

      Sounds like a plan! Or what about gammon and pineapple for dinner????????
    • ptolemy
      ptolemy paula63201

      Posted

      I don't know. It is supposed to be an anti inflammatory. Apparently on a trial with people with rheumatoid arthritis it was very suucesful, but I am not sure if that says anything or not. Sour cherries are supposed to be good too.
    • frustrated61
      frustrated61 ptolemy

      Posted

      Another way to eat pineapple (ptolemy, I've read this finding as well); but this salad is to die for!  it's a slice of pineapple with a slice of sweet onion and top it off with an amount of blue cheese you like then drizzle bleu cheese on top of that, walla! easy and oh so good.  Sounds pretty strange but that's my go to when I want to feel good!

      Warmly,

      Frustrated

    • ptolemy
      ptolemy frustrated61

      Posted

      That sounds lovely, I adore cheese and pineapple probably a reminder of my mother's cocktail parties, cheese and pineapple in a grapefruit! 
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