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

Headaches and GCA

Posted , 8 users are following.

carol20979
carol20979

For two days I have had a slight headache above my right eye It is not severe but comes and goes when i move my head,I awoke with it on saturday morning this was not that unusual It has been happening for years a pinched nerve.What concerns me is that headache has  aways gone away when I get up or even change the position of my head.Thjs headache did not go away It is very mild but stayed with me.I am concerned as my rheumy warned me about GCA and It's symptoms.Does any one have any thoughts on this?

0 likes, 9 replies

9 Replies

  • pelham29972
    pelham29972 carol20979

    Posted

    I'm dealing with the same.  I have RA and two weeks ago was diagnosed with PMR (terrible shoulder/neck and hip pains) but my rheumatologist said my SED rate was good. Headache began behind my right eye 3- 4 weeks ago, throbbing several times a day but never severe.  Felt like a sinusitis condition coming on but never developed into sinus problem.  Went to GP Thursday who suggested going to my opthalmologist since I have a recurring fuzzy floater in one corner of that eye.  The headaches stopped on Friday for two days, then came back strong this afternoon.  SEeing the eye doctor tomorrow.

     

  • EileenH
    EileenH carol20979

    Posted

    Generally people describe the headache of GCA as "Like nothing I've had before" but less than half of cases of GCA present with headache as the first symptom. 

    I would say keep a close watch for other symptoms and if you get any visual symptoms at all go to the doctor or to an optician and ask if they could examine the back of your eye - if anything is affecting the blood supply to the optic nerve then where the optic nerve joins the retina changes in appearance. If neither of those is an option immediately (same day) go to A&E/the ER. 

    Pelham - I have had a floater ever since my PMR started and someone else on one of the forums said they have one too. Mine seemed to improve at higher doses of pred and has returned, though not as annoyingly, at lower doses. It disappears if I screw up my eyes and then look again. I've seen two eye specialists over that time as well as a particularly good optician originally and they didn't see anything to be concerned about.

    • carol20979
      carol20979 EileenH

      Posted

      Hi Eieen thank you for your reply.I am reducing am at 9 mg for 2 weeks down from 10 this may be part of it, better so far today.Iam finally starting to feel good again reducing has been rough,like someone said 7 to 14 days to adjust to the new dose.I plan to stay there for a good while my Rheumy said ! mg a month...not going happen. I also want to take the pred in the am I was taking it at 6pm because they did not advise as to the optimum time to take it I got the best advice from this site. I tried not taking the 6pm dose and taking it in the am I felt like death.I have definately learned that slow very slow changes are mandatory.I am moving the dosage back in small increments I am now at 4 pm.I don't care  how long it takes I will get there.On the bright side I have no stiffness or pain and myenergy is better. Have a blessed dayconfused
    • leonard12916
      leonard12916 carol20979

      Posted

      Carol, I wasn't clear on what time you are now taking your Pred at.  Could you tell me again.  Am I correct that at the new time you are taking it you are feeling much better?

       

    • EileenH
      EileenH carol20979

      Posted

      In that case - consider the "Dead slow and nearly stop" reduction plan you will find in the replies here:

      https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

      The very gradual introduction of the new lower dose avoids the withdrawal symptoms for most people.

      A good way to change times from pm to am is not to miss the dose but to double up the dose: take your evening dose as normal, take the next day's dose in the morning and then work from there. Miss a dose and you will not only allow a flare to start but will also suffer from withdrawal symptoms which are very similar. As someone said on a thread the other day where someone had taken 2 doses on one day - that's fine, it won't do any damage and you will just feel extra good. Miss one and you'll feel so poorly you won't forget again!

       

    • carol20979
      carol20979 leonard12916

      Posted

      I took it at 6 pm but want to take it at 8 pm.Istarted moving the time I take back slowly to 4 pm then 3pm etc.Iam so sensitive to this stuff makes me feel awful when I make changes.Iam going to try Eileens suggestion and see if that works I am finally feeling better after the reduction I don't get a flair just feel spacey and awful but I am very sensitive to most meds thank you for your response.
    • EileenH
      EileenH carol20979

      Posted

      Even with my reduction plan that's exactly how I feel the first 3 times I take the new lower dose - but it is only for a day each time. Then my body seems to accept that it's OK, tomorrow will be fine, and the feeling stops. I can only reduce in 1mg steps because the type of tablet I have cannot be cut. With ordinary white pred tablets you can cut them so you can do 1/2mg at a time which is also worth trying to minimise the withdrawal problems. It isn't as slow as you would imagine - you rarely have to stop and increase the dose again because of a flare for a start. And anything is worth it not to spend a couple of weeks feeling as if you are from another planet!
    • carol20979
      carol20979 EileenH

      Posted

      Well Eileen I tried the half mg first felt so bad I went back up,I have apart time job and didn't feel like I could go out. I just decided that if I felt so bad I may as well do the one mg and yes I felt awful but better now  but it took about two weeks to level out. Three days of feeling bad I would take that! Fortunately no PMR flare,no pain just unbearabley spacey.Like you said feeling like you are from another planet. After researching the adrenal gland function I can understand better my reaction the adrenals control so may functions even the slightest change can really be felt in so many ways.

       

Back to top

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.