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PMR - newly diagnosed and struggling with my young family

Posted , 17 users are following.

Ally71
Ally71

Hi, i was diagnosed a few weeks ago and have been on 15 mg of pred for 21 days now. The pain was excrutiating and got better to begin with but I now have started getting worse pain gradually coming back. My joints are burning hot and im very sore. I have 3 kids, 3,9,11 that keep me very busy and to be honest I struggle to do the basics at times. Mornings are the hardest as Im in pain and have restricted movement but the meds seem to kick in after lunch but I am then struggling to stay awake, often laying on the floor snoozing while my toddler watches tv, before having to pickup the older kids from school and do the ferrying to the sport activities. Are there things I could be doing to help me get through the day a little easier. Im not sleeping well at all and rarely sleep longer then 2 hrs which doesnt help my mood. I dont want to be a grumpy mum but its tough and I dont want my family to suffer as well. I am considering cutting out sugar all together and maybe even trying the paleo diet, anything that may help get me through. Im a the waiting list to see a rhuemy but that will take a while. Any suggestions on issues such as managing sleep, pain and how to better function would be greatly appreciated. 

1 like, 52 replies

52 Replies

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  • tavidu
    tavidu Ally71

    Posted

    Hiya Ally, welcome to PMR and our club. I have had PMR for 11 months and started at 15mg which seemed marvelous to start with, then had to up it to 20mg and a week later up to 25mg a day before all the pain went so don't get to upset. It may be worthwhile experimenting and up the preds for a week and see how it goes, better to be without the pain and work back down slowly. All the best, Dave (tavidu)
    • Ally71
      Ally71 tavidu

      Posted

      Thankyou thats comforting to know. I will try that and also see my GP. He spoke of the need to reduce my meds over time so was not sure what to do when the pain is worsening, i may even call him tomorrow....looking forward to the thought of painfree... Clearly this is the start of the journey... 
  • snapperblue
    snapperblue Ally71

    Posted

    Here are a couple of possible explanations for your continuing debilitating pain after 21 days on 15 mg of prednisone. 

    As Dave suggests, you may need more prednisone, especially given your demanding schedule.  It took 20 mg for my symptoms to improve.  The fact that your pain is increasing on the medication suggests the the dose is too low to control the PMR inflammation.

    Second, you may have something else wrong, not PMR.  With your young family, you may be too young for PMR to be the most likely cause.  It rarely occurs in those under 50.  “Rarely” does not mean “never,” so age does not rule it out, but it is worth considering. 

    If you have not reported your continued pain to your doctor, it may be a good idea to do so. Take care of yourself! 

     

  • mary68968
    mary68968 Ally71

    Posted

    Hi Ally71, 

    When I was first diagnosed about a year ago I was put on 15mg & after 6 weeks & blood tests my rheumatologist raised it to 20 for a brief time & it seemed to do the trick.  Hope this helps.  Didn't stay at 20 for too long & wasn't that difficult to get back down, unlike now where I am stuck at 7.5 mg.

  • liz12234
    liz12234 Ally71

    Posted

    Hi there, sorry to hear you are having these problems, there are some lovely ladies on here who are very knowledgible whom im sure will be along soon to help you, i appear to be one of the lucky ones with a Dr who lets me do what i suggest and after the initial symptoms which you still appear to be getting had nearly all disappeared like a miracle on the taking of Prednisolone although i do get more tired easily, fortunatley my children are grown up i certainly couldnt have coped with 3 young children, is there anyone who can help you, dont be afraid to ask, they might need you one day
    • mary68968
      mary68968 liz12234

      Posted

      I am lucky in that respect too.  I don't understand doctors who seem to be on a power trip.  The dose needed with PMR seems to be rather individual.
    • Ally71
      Ally71 mary68968

      Posted

      My doctor is great and has referred me to a Rhuemy but that will take a while to come through. I dont have family nearby and live in a regional area in Australia. There does not seem to be a huge amount of info available here but maybe I have yet to find it... Nobody seems to know much but Im hunting down as much as possible. still all new to me.. Thankyou for your help
    • mary68968
      mary68968 Ally71

      Posted

      I live in the US near San Francisco & not all that much info here either.  This site is very helpful.  More research done in the UK than in the US on PMR.  A caring doctor whether a gp or a rheumatologist is a big advantage in the battle.
    • Ally71
      Ally71 mary68968

      Posted

      Yes, my doctor is great and is researching also. The rhuemy will have more answers. I have another query, im diabetic and used to changing insulin  doses to mange bsl levels. Is pred a drug that you manage yourself or is it something you do through your doctor. Reading blogs it seems people may increase and decrease themselves? Im still yet to understand how it works, probably another question for my GP but its nearly 1am here. He may get cranky if i call now hehe.
    • julian.
      julian. Ally71

      Posted

      my understanding of insulin is "measure bsl, work out dose".

      There's nothing that can be measured to work out the pred dose. In some cases there's a couple of indicators of inflamation in the blood which can be measured but there's not a good corelation between the reading and the required dose and the tests take too long to be useful on a daily basis.

      Half life of pred in the body is 3-4 hours. The inflammation that's been reduced takes longer to return. So pred every 24 hours seems to be the norm.

      Stiffness pain and in some cases swelling are a good indication that the pred dose may be too low.

      The pred is simply masking the symptoms, reducing the inflammation, it isn't a cure.

      There are physical and mental side effects of pred which if you don't know already you probably need to become aware of. The "trick" is to find the minimum dose at which the pain and discomfort from the PMR are acceptable. Thus the emphasis on reducing.

      I found the rapid mood swings and brain fog the hardest to contend with. That can be hard on family. I found talking about it with them helped heaps.

      The wisdom is that the PMR sort of fades and goes away over a long time. The pred dose can be reduced as the PMR symptoms fade. Really a mixture of knowing where your own body is up to and managing the reduction with doctor's advice.

      Basically minimise the pred dose to avoid the side effects without letting the pain return.

      The third bit is activity. In the early days I found too much activity and I suffered.

      Just me, I've had a relatively easy journey so far, Initially I (and doctor) found the dose at which I was stable. Then slowly reduce. I got to 5mg/day but an odd swelling so with doctors advice had to have a couple of days of 25mg then back to 6mg. Brief conversation with doctor was "then you might consider 6 for a while".

      So yes and no. I work on the basis that the small reductions over long time are for me to manage, the big departures when things go wrong I visit the doctor.

    • EileenH
      EileenH Ally71

      Posted

      You start with a dose that is enough to manage the symptoms in the vast majority of people - 15-20mg max, higher doses mask other illnesses, only PMR responds so dramtically to this sort of dose of pred.

      Then, having got the existing inflammation under control, you reduce it slowly to find the lowest dose that manages the symptoms. 1mg steps are ideal, they don't come as such a shock to the body and you will get closer to that ideal dose without missing it. Do it 5mg at a time and your body may object and while you are fine at 10mg, everything comes back at 5mg. In reality, 6mg may be perfectly adequate but you missed it. Even 1/2mg can make a big difference. This technique is called titration - trial to find the optimum dose. Mostly you start low and work up but in PMR it is the other way round. You need to be at each dose for about a month to be sure it is still enough - and at 20mg you can try 2mg steps but from 15mg 1mg is far better.

      I have always managed my dose myself although the GP always knows where I am. The current GP is trained as a rheumatologist and always says I go too fast! The slow reduction in the link I gave is the way I have reduced since 15mg after the last major flare. For the first time I got below 9mg - and am at 4mg. 3mg doesn't work. It and a very similar one have also worked for large numbers of people on the forums besides me.

  • erika59785
    erika59785 Ally71

    Posted

    This is tough, Ally!  Dealing with pain and having to take care of 3 young children.

    I see that you got some helpful advise already, and I would think that an increase of 20 mg for a week or so would help that you can cope better.  Cutting out sugar is important --- not easy to do, but helpful.  I am trying this myself because I am pre-diabetic since taking prednisone. 

    • Ally71
      Ally71 erika59785

      Posted

      I think im going to up imy dose in morn n call doc.....also Im diabetic and should be better eqipped to manage sugar levels but im finding i have little time to think about my stuff, except online in the middle of the night when everyone is asleep. In hind sight i wish i  had managed my diabetes better so pls look after yourself with that, high sugars do play havoc on your system long term...
  • pat73046
    pat73046 Ally71

    Posted

    Hi ally, you amaze me.your schedule needs you to have some sleep.Ask GP for a a sleep aid such as Ambien. When I was on 40 mg I did not sleep for days and my potassium level also dropped. Pred. Causes you to have diuresis and you also lose potassium and sugar if eating more of it and blood sugar rises. As was water goes out of you kidneys and blood sugar is high you excrete the sugar but more water is pulled out with it. You get dehydrated and more tired. The doctor should give you potassium supplements.but you can eat bananas,raisins,and other foods high in potassium.sleeping more usually makes you feel so much better. Good luck. Pat
    • Ally71
      Ally71 pat73046

      Posted

      Ooo thanks, i will look into this more, that may explain a few things.....
    • christine_fay
      christine_fay Ally71

      Posted

      A teaspoon of superfood green vegetable powder helps with any sleeplesness caused by Pred I take it in a little fruit juice.
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