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help please

Posted , 18 users are following.

maid_mariane
maid_mariane

I am 57 years old and was quite active when the excruciating pain started in my hands through the night. I sluffed it off to all the years of competitive volleyball and early onset arthritis untill it moved to my legs and it was unbearable during the night. Only to move on and get worse with shoulder pain and then my toe. After weeks my Dr diagnosed me with PMR but didn't put me on prednisone hoping to see a Rumi. I ended up in emergency and thank god they put me on prednisone. It has been a week on prednisone and my Dr has increased it to 20 but i still wake up in the morning not able to move my shoulders or walk for about 2-3 hours after i take my pills. IS THIS NORMAL

i know I'm on a long road and it seems Canada sucks for having groups. I look forward to hearing from anyone

Maid Mariane

0 likes, 63 replies

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  • david14272
    david14272 maid_mariane

    Posted

    Hello Mariane.I just wonder how and when you take your pred. For myself i found taking my pred about 5am with yogurt & bannana , then going back to bed for a hour or two worked very well for me. Best Wishes. Dave.
  • david14272
    david14272 maid_mariane

    Posted

    Mariane. I found that taking my pred at around 5am with yogurt & a banana  worked best for me then going back to bed for a hour or two. Dave.                                                                                                                                                             
    • EileenH
      EileenH maid_mariane

      Posted

      Yes - I explained that in my big post. It will get better - the shoulder pain is probably bursitis and might respond better/quicker to steroid injections. It should improve even on oral pred though it will take longer as the blood supply to the joints isn't as good as to the muscles.
  • Silver49
    Silver49 maid_mariane

    Posted

    I am sorry to hear you have PMR but pred does ease the pain. It is normal for it to take 2-3 hours to work. This is a really good forum and there are lots of helpful people on it. Eileen will be able to give you advice and guide you to helpful information. It is prudent to be guided by your body and how it feels but I find, as do others, that it is better to pace oneself as the effect can be felt the next day if we try to carry on as normal. A task at a time and a rest in between seems to work but we are all different and some can do more than others. Best wishes for a smooth journey.

     

  • Mrs.Mac-Canada
    Mrs.Mac-Canada maid_mariane

    Posted

    Hi Mariane,

    i am from Pitt Meadows, a small city about 45 minutes from Vancouver so understand the difficulty getting info on PMR in Canada.  I am grateful for this forum every day💕

    When you were given the prednisone what dose did they start you at and did you get relief within a few hours to a day or so. Most see bout a 70% decrease in pain within that time. I started at 20mg and saw those results within hours.  Did the test you for Vit D?  The symptoms are similar to 

    PMR and, living in Canada, you likely don't get enough sun to produce it. Especially if you use sunscreen.

    what time of day are you taking the pred? I think taking it at 3:00 or 4:00am works more with you adrenals and would kick in before you get up.  Just a thought.

    The experts will be along soon to give you their thoughts. Thank goodness we have them to rely on.

    I hope you find a solution to your pain soon.

    Hugs,

    Diana🌸

    • maid_mariane
      maid_mariane Mrs.Mac-Canada

      Posted

      Hi Diana

      I could cry just hearing from someone else in Canada.

      They started me off on 15 but it is now 20 within the week and i feel better going to bed. On 15 the pain started back at night.

      I'm still waiting to see a rumatologist. I take the meds at anout 6 am with milk and can't realy function till 10:30 my shoulders hurt. After 1030 its mainly the stiffness.

    • maid_mariane
      maid_mariane

      Posted

      I meant to mention that i felt the effects within hours and my husband thougjt i was crazy. He and my Dr wanted me back to work pt pre pregnazone even though i was in angony. What shmucks
    • EileenH
      EileenH maid_mariane

      Posted

      It took 6 hours from taking my first pills to being able to walk downstairs normally not like a toddler one step at a time and back up without having to go on hands and knees!

      No - work? Not yet even with pred!

    • Anhaga
      Anhaga Mrs.Mac-Canada

      Posted

      Mrs Mac-Canada Are you interested in becoming part of a Canadian email support group?  I'll private message you.
    • Mrs.Mac-Canada
      Mrs.Mac-Canada maid_mariane

      Posted

      You've got some good responses and I hope they have made you feel better.  

      I've responded to Jean's private message about a Canadian support group.  Sounds awesome.  Most of us are here for the long haul and it's comforting knowing people in the same situation are a little closer than all the way across the pond😉.  I'll PM you my email🌸

    • pam41628
      pam41628 Anhaga

      Posted

      Hi Anhaga,

      I've been reading the posts since I started on prednisone (May 2015). I self diagnosed much to my Dr.s chagrin (She didn't think I had PMR because my tests came back normal.) I had extreme stiffness especially in hips and knees....pain in upper arms and restriction (couldn't reach up ) and PAIN pulling my pants up, couldnt lie on my side or get out of bed (my husband had to push me up)

      I convinced my Dr. to let me try prednisone. She wanted to start me on 40 mg a day....I said from what I'd read about others symptoms and from the rec'd doses online that I would like to try 15 mg. She agreed. I started to feel better within hours. Within 2 days there was very little pain and way less stiffness. Within a week I felt normal! It has worked perfectly...no side effects....no other symptoms....and I am doing the slow and small taper...I'm down to 8.5 mg every morning.

      I live in Edmonton AB and would be interested in being part of a Canadian email support group.

  • Anhaga
    Anhaga maid_mariane

    Posted

    So sorry you are suffering.  Usually prednisone will help significantly within a few days.  If you are not definitely better soon it is possibly some issue other than PMR that needs to be considered - the Vitamin D question might be a good place to start.  You are right about Canada being a wasteland when it comes to online support - which is odd as I think we are the most wired country on Earth!  There is an email group with mostly Americans, but it would be good to have a Canadian one as well, especially as our interaction with the health care system is likely to be very different. I'll private message you.
  • lodgerUK_NE
    lodgerUK_NE maid_mariane

    Posted

    It is odd that Canada no longer has a site.  I met Ragnar (a Swede) on that Canadian site 8 years ago and he subsequently visited us in the UK.  He devised a reduction plan, which has since been tweaked and it used by a large mount of patients.  Ragnar's story can be found on the PMR GCA northeast website.
    • RD_Swede
      RD_Swede lodgerUK_NE

      Posted

      Hi lodgerUK NE. so nice to hear from you. Yes, I visited the Canadian forum and I remember I participated in a very nice discussion about Canadian wines. I and my wife had recently been visiting Toronto for a conference and then we flew out to Calgary and visited friends and we also went to some nice wineries. Too bad that the Canadian forum has ceased to exist. There was also a good American forum and I don´t know if that also has ceased to exist.

      As you mentioned, when I felt thayt I needed to do something to continue tapering after long pauses, I started a new regime where I spread out the tapering during a longer period than before. It got the name Ragnar´s method and seemed to be followed by many. After some year or so, Eileen spred out the tapering even longer for those who need to do that and it is the slow method that is often mentioned now.

      In December, I have been off pred for 7 years and there has been no sign of PMR or GCA (I had both) having to go back to taking pred, so I am a lucky one. I never had any bad pains like most of you have.

      Some years ago I gave a presentation about the Ragnar method in Gateshead near Newcastle and I still have the Powerpoint presentation if any of the groups would like me to come and make the presentation. At the NE meeting I found cheap flights from Gothenburg and I got to stay with Mavis, so I didn´t charge anythiing.

      I am now 78 years old and have pain in a foot. Otherwise I feel OK. I have a doctor´s appointment this week, so I hope I will get some help for that.

      In July, I visited Minnesota for a 60 year class reunion, which was very nice. I was an exchange student in 1954/55 in a small town west of Minneapolis. I stayed with the youngest of my American "sisters" and also visited often the "brother" and hos wife.

      Lodger - did you have another frum name in the NE forum?

    • lodgerUK_NE
      lodgerUK_NE RD_Swede

      Posted

      Yes Ragnar.  MrsK.

      We still talk about you and often your name comes up - you are well remembered.  5 years into remission come next New Years day for me.

      Eileen and I got together and wrote a book  'Living with PMR & GCA'.

      I don't have your postal address and have been meaning to email you for your address and I can no longer blame 'steroid brain fog'. Now I put it down to old age.   We had two support group meetings this month.  One in Gateshead where you were and one in Middlesborough.  Still having fun.   Whatever else GCA did, it made me a whole host of new friends and people whom I would never have met and never enjoyed their company.  Yes it changed my life big time, to what I had planned bit  I reckon I just started to march to a different drumbeat on an entirely path.

    • EileenH
      EileenH RD_Swede

      Posted

      No Ragnar, the USA forum suddenly started bringing up "Danger ahead" notices as the site had been targetted by hackers with nasty virues and stuff and then it became unusable. Some of the then members had already come and joined this Patient forum, one or two came over to the PMRGCAUK-NE forum too. 
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