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soreness

Posted , 6 users are following.

karen81902
karen81902

Hope somebody can help me out here.  Not sure if this is a flare up or just normal soreness that we may all have.  The back of my htighs are always sore, nothing terrible just a knawing ache.  I am on 3 mg.  Would you call this a flare up and should i go to 5 mg? Now they think I amy have lupus. This is all so hard. Does anyone here have lupus? She is running the test again in May.

0 likes, 13 replies

13 Replies

  • EileenH
    EileenH karen81902

    Posted

    It could be the early signs of one - and a simple way to see could be to try 5mg and see if it gets any better. 

    On the other hand - all your PMR symptoms could be due to lupus...

    There is a superb LupusUK forum on the HealthUnlocked site - google that to get a link. They are really lovely people.

    • karen81902
      karen81902 EileenH

      Posted

      My Dr. is not saying for sure it is lupus but my numbers are high.  My ANA is 320.  She wants to run the test again May thinking it may be a false positive. But is the meantime I am achy.  I will try 5mg tomorrow.  I was at 3.5 then went to 3 the other day.
    • EileenH
      EileenH karen81902

      Posted

      The lovely people on the forum I mentioned will explain the implications of your ANA test for you. I think (but don't quote me on it) that having a positive ANA doesn't necessarily mean lupus - there are links but I can't post them here. It just means you have an autoimmune disorder - and PMR is also an autoimmune disorder.

  • mary_49929
    mary_49929 karen81902

    Posted

    Have you had tests for lupus? Who thinks you may have it?? How long have you been on 3mg? It could be settling in at three if youre just dropped from 5mg.. i would check by ringing 111 or asking to speak to a practise nurse or dr at your local hospital... better make sure first.. i know its difficult at weekend to get help but do try first.....good luck, and i hope it eases soon
    • EileenH
      EileenH mary_49929

      Posted

      I'm afraid expecting to get advice on pred doses in PMR from 111 is a vain hope! That's been tried and tested!

    • mary_49929
      mary_49929 EileenH

      Posted

      I m new to all this, how sad that 111 cant (or won't help).. I think I 've hit every side effect of these darn steroids!!!.. but, thank God they stopped the rest of my sight going!!! So I just persevere....x

    • EileenH
      EileenH mary_49929

      Posted

      Look on the bright side - I doubt it! There are over 82 listed side effects of pred. No-one has really reported every single one themselves! There are a few potentially horrible ones but not many. One of the good things about pred is that it has been used for over 60 years - there isn't a lot to find out about its side effects, just how it works!

    • karen81902
      karen81902 EileenH

      Posted

      so shoud I consider a little soreness a flare up or not.  It is there every day. Does any one have a soreness in their neck?
    • Silver49
      Silver49 karen81902

      Posted

      I, too,had a bit of soreness in my neck and was questioning a flare but had been knitting (haven't done any knitting for a long time) and suddenly made the connection. Yesterday and today my legs have been very sore but can put that down to grandchildren staying and one of them being very sick necessitating a lot of bending etc. I realise how out of condition my muscles are despite moving around a lot. Have you been doing anything that could account for the soreness?

    • EileenH
      EileenH karen81902

      Posted

      The level of painfree-ness you achieve in the starting dose is your guide to what is acceptable. Not everyone is pain-free but there should be a big difference. As you reduce, that should be your yardstick: am I still as well as I was at the start?

      You may have other things that cause niggles: myofascial pain syndrome, piriformis syndrome, bursitis can call cause back/shoulder/hip pain and may be confused with PMR pain. They are better treated with targeted approaches rather than just oral pred.

      While squats are a good eercise for most people - they have to be approached with care by people with PMR. I used to work up to doing 100 before the ski season - it is a very different matter now with PMR. I have to start with literally just a few and build up VERY slowly. It is a type of exercise which can often cause sore thigh muscles in PMR.

    • Guest
      Guest karen81902

      Posted

      Hello Karen, I have had achy  slight burning sensation in my arms and thighs all along since getting below 20mgs approx, (a bit like when you have overworked a muscle before diagnosis). diagnosed a year ago now on 9 from 40mgs. I thought it was a flare  and went back to 12 from 10mgs about 3/12 ago, have decided to ignore it now and notice it is a little more obvious when I have been busy. I suspect it wasn't a flare and that if it was it would have been more painful as Eileen and co might say. A bit tricky to tell the difference I'm afraid. goodluck with your blood test

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