1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

I was diagnosed with Polymyalgia two weeks ago and am on 15mg of prednisone.

Posted , 14 users are following.

henni05917
henni05917

At first l felt no side effects from the prednisone and my shoulder movement seemed improved. But now past week feel terrible headaches and legs feel weak . Anyone else ?

0 likes, 18 replies

18 Replies

Next
  • lynda62707
    lynda62707 henni05917

    Posted

    Yes!!! Exactly what I felt 3 mon. ago when 1st dx w/pmr. I too was put on 15mg prednisone and it shockingly worked with in hours! My pain has always been more in my wrists, hands, fingers and back, but no matter, pain IS pain. I hated being put on such a drug as prednisone and tried to get off it WAY to quickly ( within the 1st couple of weeks). HUGE MISTAKE! I'm just now coming to grips with the fact that this is more than likely long term, and I'm gonna have to taper this Very slowly. I'm currently on 16.5mg. and trying to navigate myself through all the side effects. Please don't do as I did and try to taper too quickly. All I accomplished is throwing my body into chaos and going up to a higher dosage than I started out with! If nothing else, I've learned that this is definitely a rollercoaster ride, filled with different symptoms at different times and trying to figure it all out! This forum is great for information, and I hope you also have an informed and compassionate doctor. It took me a couple of trys to achieve the latter, but hopefully I've got a good doc. right now! Good luck to ya and please keep us posted. Lynda

  • barb3389
    barb3389 henni05917

    Posted

    As Lynda62707 says, don’t try to taper too quickly. When you get 8mg or so, drop only .5 mg at a time staying at each dose 3-4 weeks. That is not what my doctor said but through reading about others experiences that seemed to be best. Currently off of prednisone - I seem to be one of the lucky ones - PMR pain is only occasional.. But my SED rate is still high. Going thru a bunch of tests to see what else may be going on.

    Based on a UK article, I am taking a lot of suppliments. My post about this was deleted, I guess because it included a link to this article. Have no idea if all these suppliments has had an effect or not, but right now I am not on prednisone.

    • ptolemy
      ptolemy barb3389

      Posted

      I have a high sed rate for no apparent reason. I tend to be fobbed off with that is  the normal level for you.

      Do you know what tests you are having done to see what is going on? The only test I had was a blood test for heart failure which was negative.

       

    • barb3389
      barb3389 ptolemy

      Posted

      The rheumatologist sort up threw her hands up(my interpretation), and referred me to a Hemotologist- which turned out to be a Cancer specialist - boy was I shocked.

      After my visit and exam she did find some swollen lymph glands which is why I’m having a bunch of tests done - CT scans of neck and abdomen.  No other doctor, PCP or Rhematologist(or the PA), bothered to even check by feel if there was a lymph node problem - not sure what the normal protocol is, but bottom line is I’m seeing someone who wants to get at the source of any problem there may be. 

      My scans are Monday, and my followup with the Hemotologist is Thursday. If interested I can report back.

      BTW - I was diagnosed with PMR in Sept 2015. Finished prednisone in Dec 2016. But SED rate and weight loss occurred in March/April 2017. Finished 2nd round of Prednisone in April 2018. 

       

    • lynda62707
      lynda62707 barb3389

      Posted

      I'm very interested and concerned for you. Please do keep us posted! Sending you nothing but good, positive thoughts! Try not to worry.

    • EileenH
      EileenH barb3389

      Posted

      Barb - could you send me a link to the article in a private message please. I'd be interested to see it. Thanks

    • EileenH
      EileenH barb3389

      Posted

      One of the causes of PMR symptoms can be blood cancers - so your rheumy was quite correct to refer you to a haematologist because rheumies don't know much about oncology! Or how to rule out those sort of nasties. Unfortunately, most of them seem not to be bothered...

    • bestrong
      bestrong barb3389

      Posted

      Hi Barb3389,

      I was curious what supplements you were taking. I could not tolerate prednisone. I am seeking a natural solution for myself. I just tried acupuncture and it helped so I am going to continue with that. If the list isn'

      t too long, I would love to know what supplements you take.

      Many thanks,

    • ptolemy
      ptolemy barb3389

      Posted

      Thanks barb, I have had a CT scan of chest, abdomen and hips. They were actually checking my hip for arthritis but needed to ensure I was fit otherwise for the hip surgery. I did suggest there could be a possible cancer problem to one of the rheumies I have had who just flipped the idea away with her hands! 
    • barb3389
      barb3389 bestrong

      Posted

      The 1st list is what I took after 1st rounders of prednisone finished :

      fish oil and flax seed oil  2 each

           Primrose Oil 1 g 

           Bromelain 500 mg - 

           Vitamin C 1000 mg

           B6 - 100 mg 

                 Replaced with B Complex

           Msm 1000 m      

           Cur-q10 ultra 

                Turmeric root - 1330 mg

                 Co enzyme q10 - 200 mg

                 Black pepper extract 20mg

      I’m now only taking:

         2 fish oil

         2 krill oil

         Calcium includes VitK and other 

         D3

        2  Tumeric-Ginger

         B complex

    • Mrs_Hobbles
      Mrs_Hobbles EileenH

      Posted

      Really Eileen? Well that's not scary at all!! I thought it was yet another autoimmune illness?! So what should we look out for in our bloods, if doctors or rhumy are not bothered or even aware?

    • EileenH
      EileenH Mrs_Hobbles

      Posted

      Most things should be covered by the full blood count and the normal panels of blood tests - providiing they bother to take notice. Which is why it is always a good idea to get YOUR personal copy of your results and where there are abnormal results - ask! The normal ranges are always quoted in brackets after the result and most labs flag up anything strange. And if you don't respond very obviously to the pred - query it.

    • barb3389
      barb3389 lynda62707

      Posted

      Lynda2707 - 

      Update after visit to hematologists. So far after a battery of tests, nothing has been found. Still a few more to go. My CRP has gone up now, but no bilateral pain. I basically feel fine. 

    • lynda62707
      lynda62707 barb3389

      Posted

      YAYYYY! That's Good news. I just had blood work done yesterday and haven't gotten results yet...always a little nerve wracking sad please keep in touch and let me know how it's goin. Take care, lynda

Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.