Fear over 4-5 day headache

Ok I found you all while back in pain at 7 mg pred.. Actually started at 9 then 8 but my focus was get off as fast as I can then I will be well.. So now with a new reality and thanks to all of you some peace as silly as that sounds I went back to 10mgs..

This is my 4th day on ten and my 4th day of right side headache where it hurt just prior to GCA diagnosis..

Does GCA also reoccur?

The thought of going back to 50 mg is so fearful to me as it was awful at that dose.. At least st 10mg I am not on the roller coaster ride but also am having pain still.. I must admit doing something stupid and washing my car where you keep putting in quarters so I washed my car in under 5 minutes.. oops!. Never again..

so my question is regarding fear of GCA coming back

6 Replies

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  • I'm relatively new to all this , if you get visual disturbance go straight to a&e preferably at a time when scan would be available as if you did have to go back to 50mg at least you'd have a scan before steroids kick in and confuse results . Hope the headache will pass without presenting as gca returned ... Scary

  • Thanks for the advice. in USA we go to the ER which is emergency room. I hope I don't have to.

  • Lin-Calif,

    I have GCA. I was on 40 mg for almost a year! Every time that I tried to reduce the Prednisone, I had a flare up- severe headaches, jaw claudication,

    If the headaches continue, please call your rheumatologist or go to the ER, especially if you have any visual changes.

    In the last 6 months, I have an IV infusion of Actemra, which has been found to help with GCA. I am now taking 4.5mg of Prednisone, as I also have PMR.

    I wish you the best. Let us know how you get along. I live in Sonoma, CA. Where do you live?

  • Thanks for your response. I do not feel like I have vision problems just the normal stuff.

    My jaw has had slight pain even when on 50 mgs. Way better than the pain prior.

    I live in Santa Rosa.. Do you have a local Rhuematologist? I had to keep mine in Oakland and it has not been a good thing. I am on medicare and not all doctors will accept it or me. Awaiting my clinic to hire a new Rhuemy to take on the cases of those if us waiting.

  • Lin-Calif,

    I am also on Medicare with Kaiser. I have received very good care with my doctors from Kaiser, I have a wonderful rheumatologist who has really been an advocate for me.

    I hope that you do not have to wait too long to find a rheumatologist. Sending you my thoughts and prayers.

  • I am in Atlanta, Kaiser as well. Agreed - a year of hell and finally saw a rheumatologist. Weight gain. Seeing a holistic MD (not Kaiser) and I am trying Naltrexone along with prednisone. Weaning off of prednisone as I have reactions. Lots of allergies to drugs. Currently low symptoms (stiffness, shoulder aches) - just want off the prednisone. Wishing you well.

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