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Finally I will be put on prednisone for my PMR what to ask?

Posted , 13 users are following.

whitefishbay
whitefishbay

Hi All

I have had PMR since November but my rheumy wanted to make sure I really had PMR before she put me on prednisone.  Fair enough.  I had one steroid injection in Jan which helped hugely (I went from feeling 2 up to feeling 6 out of 10).  The steroid injection is wearing off as I feel so stiff in my shoulders and hips.  Ouch.  Anyway I see my rheumy on Weds and I am sure she will finally diagnose PMR and put me on 15 pred.  The apt are always so rushed although I see her for about 1/2 hour.  Please help me.  What questions need to be asked?  like what vitamins do I need to take.  Some of you mention magnesium, vit D, etc.  Also what are the measurements they will keep track of with my blood test like erythrocyte sedimentation rate (ESR)

plasma viscosity (PV)

C-reactive protein (CRP)

I think from all of you with your true pain of PMR and living with it probably know more than the rheumatologists so I will do the dead slow method of reducing pred.  Will I need to take naproxen any longer?  

One last question - did anyone else get nosebleeds on Naproxen?  

A huge thank you to everyone as all your comments are helpful and worthwhile.  I mention PMR to everyone I meet (almost) and it is amazing to find how many other people have it.  Maybe if it is recognized more we could get treated faster which would save alot of pain and frustration.

Once again thank you in advance.

Whitefishbay

2 likes, 45 replies

45 Replies

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  • diana21296
    diana21296 whitefishbay

    Posted

    I get nosebleeds on prednisolone although it is not listed as one of the many side effects..  Mentioned it to rheumy and GP but both just brushed it off and said maybe the steroid had thinned the skin in the nose!  I had never had a nosebleed before in my life!  I turn the shower to cold when I wash my hair and don't drink really hot drinks are 2 tips.

     

  • diana21296
    diana21296 whitefishbay

    Posted

    I had to start on 30mg and even then I was still only 70% pain free until I spit the dose, early morning and tea time. Stayed on 30 for 6 weeks and was then able to reduce to 25mg.  Now on 13mg but backache sometimes and weak wrists.  Every day is different.
  • iellen32
    iellen32 whitefishbay

    Posted

    Nosebleeding may be associated with High Blood Pressure, too.

    Hope you find the root cause of your sympto.

    Take care.

     

    • ptolemy
      ptolemy diana21296

      Posted

      I have my own BP machine in fact I have two! My friends and I sit round with a bottle of wine taking our BP and seeing if we can get it to go up and down and also change our heart beats! Really childish, but amusing.
    • Anhaga
      Anhaga ptolemy

      Posted

      And can you?  Change your heartbeat and blood pressure I mean.  cool
    • ptolemy
      ptolemy Anhaga

      Posted

      It is amazing how BP varies, just watch some politicians on television!! 
    • Anhaga
      Anhaga ptolemy

      Posted

      Since PMR I've learned to avoid a lot of that nonsense.  And thankfully Canada is not so horrible since the last election.  wink
    • ptolemy
      ptolemy Anhaga

      Posted

      Canada seems a lot calmer than UK at the moment. In fact it normally is. We have the great fun of the EU Referendum which seems to be taking over everything in a sort of madhouse.
  • iellen32
    iellen32 whitefishbay

    Posted

    Only you are able to make a list of all question  should ask the doctor based on your symptoms.

    Your observations regarding the food you eat.

    What agrees, or not with

    Your disposition to exercise.

    your diet. What kind of food that agrees, or not with you .

    Your sleeping habits.

    Questions you may have about your Vitamins, supplements.

    Pain killers.

    Good luck!

    Your observations regarding your  sleeping habits.

    Your observation regarding your physical disposition to exercise, your diet.

     At what  time you take your steroid - if you split, or not, your daily dose.

    Your observations regarding the medicines and vitamins you take.

     

    • ptolemy
      ptolemy iellen32

      Posted

      iellen, I am very envious that you are able to ask questions like that and get a sensible reply.

      I asked my rheumy about diet, he said give up salt, otherwise you can eat what you like.

      On steroid side effects, he said there were too many to mention.

      On exercise he said carry on as you did before. The steroids will sort you out.

    • iellen32
      iellen32 ptolemy

      Posted

      Thank you for your good words!

      My heart is filled with joy after reading your kind reply because what brings me to the Forums is not only get information but to help if I can - I do not have s massive knowledge though - but a big amount of good will.

      Since the beginning if my GCA and taking Pred I cook everything without any salt.

      If brocoli I use some drops os lemon and one turn of olive oil after cooking and getting rid of the water, It tastes great this way!!

      Lots of herbs on broiled veggies.

      Use fresh ginger, turmeric, cinnamon.

      Eat avocado, pspaya and half a banana- it's potassium helps my legs to walk better!

      Stay wel

    • molly1957
      molly1957 ptolemy

      Posted

      Ptolemy I too have the same problem with my rheumy , I mentioned I had put on loads of weight and his reply was unfortunately steroids make your appetite increase it should get better as you decrease , it hasn't yet I'm slowly going down to 5 1/2 , I asked if there are things I should or should not be doing and he said carry on as normal so I did and suffered pain when doing what I would normally do , i only found out from this forum that you have to listen to your body and rest and not push it too far . There are loads of symptoms of PMR but the leaflet I received from my rheumy only touches on the very basic ones so sometimes your not sure if it's the pred causing your problems or the pmr again this is where this forum has been invaluable to me , many a time I have come on and read that someone is having problems with something the same as me and I actually feel relieved because I feel like a hypochondriac at times because of all the things that go on with this condition . 

      Thank you you everybody for your help and support 

      regards Molly

    • ptolemy
      ptolemy molly1957

      Posted

      Hi Molly, when I started on pred my rheumy said they will make you blow up like a balloon, he really had a great bedside manner! I  do wish he had given some basic advice, he assumed you take pred and that solves everything.
    • molly1957
      molly1957 ptolemy

      Posted

      Exactly like mine , he said you will notice a difference in a few days if it is pmr with taking the pred , when I went back he told me I would be on steroids for about a year and gave me the impression that was it I should be pain free , I wish eh .
    • ptolemy
      ptolemy molly1957

      Posted

      Mine said I could be on pred for three and a half to four years or even for life! His great bedside manner again! 
    • lee63556
      lee63556 ptolemy

      Posted

      Ok mine doctor is more encouraging as he told me PMR will 'burnt' itself out. So chin up everybody 👍👍👊👊 out the PMR 
    • iellen32
      iellen32 molly1957

      Posted

      Like you, Molly, talking about symptoms - I have GCA,  sometimes I may sound like a hypochondriac ....so we like to know there are more

      people feeling the same as we do!

       A reservoir filled with patience  is a must for us all to have, anyway...

      Stay well,

           xx

       

    • Anhaga
      Anhaga ptolemy

      Posted

      My doctor was sort of in between, telling me that some people keep a supply of 1 mg tablets on hand in case they need them. 
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