I have been on predislone now for a month

Posted , 12 users are following.

Hi,

I was put on predislone 15mg a month ago for suspected pmr, my esr levels werent raised but i had the symptoms of pmr so gp put me on them. I am now on 12.5 mg for last 2 weeks. I have been feeling so much better, loads of energy and pain free, however in the last week i feel like i am back to how i was before i started the medication. Is this normal to have the pain again in the arms and shoulders? I have really bad headaches across my eyes too. My blood tests showed an increase in white blood cells. Has anyone else felt like this while on this medication?

0 likes, 17 replies

17 Replies

  • Posted

    Suspect you are  tapering too fast. I was on 20 mg for six weeks before tapering to 17 1/2 mg. Your starting point may have been too low, and it’s surprising that you would be tapering after only two weeks.
  • Posted

    I'm impressed that your GP diagnosed you with PMR without your inflammatory levels being high. So many doctors look only at that inflammatory markers to determine if you have PMR. But you can have PMR and have low ESR and low sed rate.

    I am somewhat concerned about your headaches going across your eyes because I know that headaches can be a sign of GCA. It is my understanding that typical symptoms would be a pain in the temples, a sensitive scalp and that it hurts to chew. My concern is that if you do have GCA and it's not treated right away you can lose your vision. The way they test for GCA involves a lot more than just giving blood. They take a sample of your temporal artery and test it.

    As Daniel1143 said in his comment that you may be tapering too quickly. And everything he said is absolutely right. You should be tapering very slowly. It's even more important when you get down to a lower dose. But still you were only at 15 mg for 2 weeks and that's not nearly enough time to get rid of the inflammation in your body two then start tapering. I think most rheumatologists keep you at the original dose for 4 weeks before you begin tapering down. The other thing it could be is a flare and those can happen sometimes for no reason at all. And if that's the case you may need to increase your dosage for a few days and then go back to your original dose.

    • Posted

      Thank you for that In formation, it may well be a flare up, I just expected to feel as well as I did at first. I speak to the doctor Friday , will see what she says
  • Posted

    Hi Christine, it does sound like you are tapering too fast. Nice and slow is the best way forward in reducing. My rheumie got me to reduce initially after three weeks and it was a total disaster. They suggest not to reduce more than 10% at a time although some people seem to be more resilient to reductions than others. I always wait four weeks on one dose to ensure all is well and going smoothly. I seem to have had white blood cell increases but am OK now. 
  • Posted

    Hi Christine, I agree with the others, tapering too quickly. I think you should never taper if you have any PMR pain. Taper using the DSNS method. When I did not and followed my doctor's direction I had a very bad flare and ended up on more Prednisone then when I started. Do not rush tapering off Prednisone is not a race! Think positive and try to smile. ??

  • Posted

    If you are having increased symptoms - and ESPECIALLY if you have headaches, you need to speak to your doctor uregently. You may have been at the very start of things when you started with the 15mg but the illness may be progressing and becoming more active. About 1 in 6 patients who are first diagnosed as having PMR go on to develop GCA and that can cause headaches and more severe PMR symptoms as well as other things. 

    Really you should have stayed at 15mg for a month or so before reducing but I can understand why you were told to reduce if all seemed so good. However, if the PMR is progressing to GCA you will need a higher dose of pred I'm afraid. If you have any visual symptoms or the headaches get worse please don't wait until Friday to see the doctor. If you have visual symptoms of any sort go straight to A&E/the ER and tell them your symptoms and diagnosis. Once GCA starts to cause visual symptoms you need very speedy medical treatment to reduce the risk of loss of sight.

    • Posted

      Thank you for your advice Eileen. I thought my headaches were due to sinus pain as I have had blocked nose & achy throat, hadn't considered it being that. Will speak to the doctor as soon as I can get through to one

    • Posted

      You may be right - but when you have PMR you always have to have GCA symptoms at the back of your mind.

      All the best

  • Posted

    Hi Christine; I agree with everyone else who posted on your condition. Especially listen to Eileen's and AMKOFFEE's advice re GCA.  Also, re your lab results, I had a PMR relapse 18 months ago without knowing it due to  different symptoms presenting than the original onset 11 years ago. Sore wrists, swelling of my ankles and lower legs. My new GP doctor thought it was Carpal Tunnel Syndrome and the swelling a reaction to my blood pressure meds since my sed rate and ESR were also normal like yours. He was not experienced with PMR and had not requested a C-Reactive Protein (CRP) test until I insisted a month later. My own research indicated that the CRP test is almost always elevated with PMR. It  came back very elevated, and I was immediately sent to a Rheumatologist for treatment. As others have said here, the ESR and sed rate don't tell the whole story.

    • Posted

      I have just had my first ever elevated CRP - barely outside the normal range though. That is after 14 years of PMR! The ESR was also outside the normal range for the first time. But I had had a chesty cold a few weeks earlier - perhaps leftovers?
    • Posted

      Not a bad article but several inaccuracies. Painkillers do nothing for PMR pain for the vast majority of patients and a recent study shows the median duration is 5.9 years - not 3! And steroid sparering drugs are actually used quite a bit now. Probably other things I disagree with too...
    • Posted

      Although the author seems to have looked at various articles on PMR/GCA, I get the impression that things were rather picked out without a great deal of knowledge so some items are spot on, some so so and some wrong ! 

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