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Temporal Aertry

Posted , 10 users are following.

viv1956
viv1956

I have had a headache with sore neck, jaw and temples for a month.Went to the doctor she did a blood test which came back high put me on predisone that day then scheduled me for a biopsyToday the results where inclunclosive, So she added more predisone for five days then another blood test if thats still high a biopsy on the other side.The headache is better but the side effects of the predisone are terrible.Any ideas as ways to deal with the side effects.

1 like, 16 replies

16 Replies

  • Guest
    Guest viv1956

    Posted

    Your experience sounds exactly like mine over a year ago. There are 80 some possible different side effects for pred...the higher the dose the worse they seem to be. I know you do not want to hear this, but you need to recognize that pred is saving your eyesight and possibly your life. You just have to live with the effects of the med knowing it will improve with lots of time. Your body may adjust as time goes along. But being rid of the horrible headaches, jaw pain etc. is so important. Keep us informed!! 🌻Ann11195
  • ptolemy
    ptolemy viv1956

    Posted

    I believe there are over eighty side effects from pred, which ones do you have?
  • iellen32
    iellen32 viv1956

    Posted

    As your biopsy wa inconclusive it did not help a prompt  diagnosis and the immediate starting   of  the treatment of whatever is  you health condition.

    Opposed to your case  I had a symptom which led me to the ER where in less than 3 hours and all tests done I got the diagnosis and Immediately was given Pred 60MG. A biopsy was scheduled and the result was 100% conclusive - Temporal Arteritis.

    Never had a headache, neither scalp sensitivity,  just pain on both sides to chew and neck pain when yawning.

    However for  one month during the process of the onset of my illness I had flu like symptoms, malaise, fatigue,  night sweats, 12 pounds weighty loss, a terrible sore throat as I ever had before. It was December time of flu season I thought  I had got the flu and the GP I had by that time I see now was a failure.and put in risk something previous - my Vision.

    As every person has a different reaction  to the same medication as you still don't know exactly what you exactly have, Inwould look for a second opinion.

    The headache is a symptom to be considered.

    if we have headache is the first question of the rheumatologist.

    Wish you all the best.

    🌺

     

  • Lee-Colorado
    Lee-Colorado viv1956

    Posted

    The biopsy was inconclusive with mine also; however, after losing vision in my right eye I am extremely greatful not to be blind. I have heard that there is a newer test that uses ultrasound. What is your CRP and ESR? My CRP was 117 at the start. When you comb your hair dose it feel like dragging a knife through it.
    • viv1956
      viv1956 Lee-Colorado

      Posted

      My CPR is 146 i am taking 60 mg predisone daily. no problems with my scalp, i did devolp a catarac and had surgery
  • MrsO-UK_Surrey
    MrsO-UK_Surrey viv1956

    Posted

    Viv, it's highly likely that your second biopsy will also prove inconclusive if you have been on steroids for more than a couple of weeks.  If there were any large cells in the temporal artery at diagnosis, they will have resolved due to the high dose Pred.  A more conclusive test is a PET/CT scan.  However, if your head pain and other pain has resolved on the high dose Pred, that will probably be taken as confirmation of it being Giant Cell Arteritis.  As the others have already said, there are over 80 listed possible side effects of Pred but fortunately no-one gets them all and some lucky people dn't get any.  You haven't said what dose of steriod you are taking, but the higher the dose the more likelihood of side effects.  You haven't mention what your side effects are so it is difficult to offer your advice from our experience as to how to deal with them.  If it is difficulty with sleeping, then catnapping during the day is a must.  Feeling over-excited and wanting to climb the walls can be another side effect from high doses, plus emotions can be all over the place.  Importantly, don't be tempted to race around but give yourself plenty of TLC to allow the steroids to really get control of the inflammation and keep it there. Your body needs time to adapt.  Most of the side effects will disappear as you reduce the doses but, having said that, don't be in any hurry to reduce from your starting dose which is probably somewhere in the region of the equivalent of 40-60mgs of Prednisolone.   You will need 4-6 weeks at that dose.  I do hope you continue to feel better.
    • viv1956
      viv1956 MrsO-UK_Surrey

      Posted

      Side effects are tired having trouble sleeping feeling of anxiety nasaue try to stay focused and working with these symptoms is becoming difficult
    • ptolemy
      ptolemy viv1956

      Posted

      These are very typical side effects of steroids and it seems a lot of people get them. I gave into the insomnia and listen to the World Service waiting for the birds to start singing! My brain has virtually stopped working, but perhaps it was not that brilliant before. Cutting out simple carbs and gluten is supposed to stop a moon face, it worked for me and as Ardern says your diet is important, I have become a nutrition bore, it is amazing I have any friends left particularly as I am now also talking about gut microbes! 
    • Elijo
      Elijo viv1956

      Posted

      When I first started on 40 mg, I could not sleep, but everything was good, looking at the world through rose colored glasses. Am on 10mg. now, become very sleepyi, not much energy.  One problem remains throughout this whoel journey--I bruise and cut at the slightest touch, bandages, etc.  However, when you use a bandage, do use the non stick gauze, and go easy on the tape or it will pull the skin & healing scab right  off and start bleeding again.  I'm wondering if maniy othe PMRers have this problem, and when it stops?
    • MrsO-UK_Surrey
      MrsO-UK_Surrey viv1956

      Posted

      Viv, I, too, experienced insomnia especially whilst at the higher doses and didn't find much of a solution to it other than to catnap during the day to catch up.  Feeling anxious is also a side effect of the high doses in particular.  These side effects will improve as you reduce the dose.  With regard to the nausea that is only something I experienced  during my few weeks with undiagnosed GCA, in fact I was actually vomiting.  That resolved completely within hours of my first dose of steroids and hopefully it will for you as the steroids get better control over the inflammation.     I can so understand how difficult it must be to work when first diagnosed with either PMR or GCA or both.  In fact, I've always been in awe of those of you who have to work.  Many people have found that they need to take a period of sick leave in order to feel better, with some returning on a part-time basis at first and gradually building up their hours.  Certainly those who have to work in the early days can tend to have more difficulty in managing the symptoms, side effects and dose reductions.  
  • Ardern
    Ardern viv1956

    Posted

    hi Viv

    Last Oct I was diagionsed with TA though a biopsy my blood chemist was normal until I was put on 60 mg per day and at that piont my blood chemist went though the roof CRP climbed to 150 and back to normal in less than a week. I found that exercise helped me get over the side effects that developed after I took the meds. You just have to take one day at a time.  I found that a lot of foods made the side efects worse. I have cut out al procesed foods red meat sugar white flour etc.  i have been able to taper down to 7 mg but still have some side efects but you get use to them. I biggest problem was my blood pressure aftr a couple of weeks it was down to normal. the last thing you want to have happen i sTA to come back my jaw pain was so suver that  had trouble eating   

    Good luck it will get better

     

  • viv1956
    viv1956

    Posted

    Today had labs they came

    back lower still having some pain even though i'm on 60 mg predisone a day, doctor wants to do the second biopsy ASAP and keep me on the high dose or increase it, but if its only going to come back inconclusive then why do it.If the predisone isn't taking away all the symptoms then why take it.I also have fibromalgia and spinal stenosis so i have lots of chronic pain

    • ptolemy
      ptolemy viv1956

      Posted

      The reason to take pred if you have GCA is that it can stop you going blind. I do agree with you it does seem a bit of a waste of time having another biopsy if you have been taking pred. Have your blood markers gone down, your CRP was pretty high?
    • viv1956
      viv1956 ptolemy

      Posted

      Yes the cpr went down but the doctor says she can't lower the predisone safely without a definitavie diagnosis, since all my syptoms aren't gone with the medication there thinking maybe something else is going on as well as the GCA
    • ptolemy
      ptolemy viv1956

      Posted

      That is fair enough, if they think it is something else causing the problem.
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