Severe headaches with GCA
Posted , 9 users are following.
Can anybody who has had GCA tell me if you continued to get severe headaches even while taking prednisone. I was diagnosed about 6 wks ago and put on 60mg prednisone. Was reduced to 30mg after a month and now down to 25mg. Have still been having headaches of various strengths in the meantime and last night had a really bad one which after about 2 hours localised to the top right of my head, with really severe waves of pain. Took solpadol but it didn't help and I haven't been prescribed anything else to help. My own doctor won't make the call and prescribe anything and I don't go back to my Rheum doc for another 5 weeks, so I'm left adrift with no help and not knowing what to do. If I knew this was par for the course I could 'accept' that headaches are part of it but if not then I'll have to do something. Any advice would be appreciated. Thanks!
0 likes, 27 replies
margaret22116 Mrs_Hobbles
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Mrs_Hobbles margaret22116
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Hi Margaret, yes I remember our discussion some time ago. Rheum doc treating for GCA, no result of biopsy at last appointment and nxt appointment in 4-5 wks. He says he not expecting a positive result as I was on 60mg pred for almost 4 wks by time biopsy was done. He wasn't in favour of putting me through a biopsy but as I was admitted to hospital under another consultant, it was that consultant that ordered the biopsy. Sorry they did to tbh as site very tender, numb & swollen and to be told that result won't be regarded, have to wonder why. Hope things are going well for you.
ptolemy Mrs_Hobbles
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Mrs_Hobbles ptolemy
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Thank you. Yes I'm thinking I might need to increase the pred. Woke this morning with pain in arms, buttocks, backs of thighs and headache (not terribly bad). Very surprised by pain creeping back in while on 25mg! Might increase by 5mg to start with and hope it might settle things, thanks again.
ptolemy Mrs_Hobbles
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elizabeth20640 Mrs_Hobbles
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Hi I was first diagnosed PMR and was on 20mg it was only when they reduced my dose down to 12.5 mg I developed jaw pain and severe headaches , I was admitted to hospital and had positive biopsy and dose increased to 60mg. Fine leaving hospital, but next day headaches back again,
I went back to hospital and they prescribed pain killers, but didn't work,
But a week later I developed tempory sight loss, was very frightening, and I probably frightening you right now but go to hospital don't wait, I was able to ring someone off the rheumatologist team, and they told me to come to hospital they increased my dose to 80mg and had eye exam, please go to the hospital
Mrs_Hobbles elizabeth20640
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You've been through the mill too, very frightening losing your sight, the worst fear we have really! I feel when the headaches get bad that the back of my eye gets dry and prickly but have had them checked and told they're fine! I have absolutely no backup from my own doc or Rheum doc and bar calling an on-call doc and explaining from scratch, or spending 5-7 hours waiting in A&E, I'm not going to get any clear answers, it's a ridiculous situation to be in and frightening when things start to get out of control. Thanks again for your advice and hope you're doing well now.
alley2 Mrs_Hobbles
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I would go back to 30mg for a month then try to go down slower. I too have GCA since May this year went from 37.5mg of pred to 30mg of pred okay then I tried to go down to 27.5mg lasted 6 days then I'm back to 30mg got same as you headaches fatigue felt off took 24hrs for the headaches to settle more of pressure in top front of head rather then headaches thats for me anyway. Hope this helps I take 5mg of Endone every now and then I find this is the only pain killer works for me.
Mrs_Hobbles alley2
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Thank you, yes I think you are right, I'll go back to 30mg. On the one hand the Rheum doc is trying to get me down fast on the pred but I'm just not able for it and whereas we all want to get lower it's no good if things start to flare up. What type of painkiller is Endon, haven't heard of that? This is part of the problem that I don't have a painkiller that will get to the pain, they tried Lyrica but it didn't do anything. Thanks again for the advice.
Anhaga Mrs_Hobbles
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If you have pain because of PMR/GCA only a sufficient dose of prednisone will really help. Your doctors need to let you have enough time for the major inflammation to be cleared out before insisting you taper. In the long run your taper should be more successful and you'll end up taking a lower total dose of pred than if they try to rush you off it prematurely.
A Grook by Piet Hein:
T. T. T.
Put up in a place
where it's easy to see
the cryptic admonishment
T. T. T.
When you feel how depressingly
slowly you climb,
it's well to remember that
Things Take Time!
alley2 Mrs_Hobbles
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Endone is Oxycodone I take 5mg you probably need to get a script for it works great for me i've tried lots of different ones this one works. Now we been talking about headaches with this GCA my pain in my head has begun to get worse might have to up my meds i'll talk with Doc tomorrow also plus I feel the flu coming on thought I was lucky to miss out with all around me real sick so over being unwell but hey yep one day at a time. Really miss working and probably wont be able to work again.
Anhaga alley2
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It's highly addictive and the cause of a lot of illegal drug use in my province.
alley2 Anhaga
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Anhaga alley2
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But my understanding is that prednisone is supposed to relieve our pain and if it doesn't there may be more going on than PMR, so there should be more investigaton to find out the cause of the pain.
When I broke my leg I was going to be sent home from the hospital with a prescription for 50 (yes, fifty) oxycontin tablets. I said I wasn't having them in my house. An hour later they found another doctor who wrote out a prescription for twenty tylenol 3. It took me a year, with my husband also taking some, to use up all those tablets, and during much of that year I had undiagnosed PMR. I just think if one is going to suggest certain medications one should also warn that the drugs are very serious, in their own way at least as serious as prednisone. That's all I meant. Of course people are free to make their own decisions, but we do need to be well informed to make the best choices. Cheers.
iellen32 Mrs_Hobbles
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Some flare ups when the prescribed tapering is done too fast then back to a higher dose of Pred until my system feels comfortable.
Now I am able to do those adjustments according to what works for me.
In your case I see that the hesdache does not alarm the doc, because every patient has different symptoms with the same illness
iellen32
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For us having GCA the most important point is the vision.
How is yours?
Hope all goes well.
Take care,
iellen
Mrs_Hobbles iellen32
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Thank you for your thoughts. My problem with my own doctor is she feels she's transferred me to the rheumatologist and feels he needs to answer the questions, so she just won't make a call on any painkiller. She suggested Nurofen and Difene but knows I can't take anti inflamatory meds plus they can't be taken with steroids! When the headaches are bad my eye feels dry and prickly but have been checked and told they're ok. Am going to increase back to 30mg and hope that it'll settle things down. It's being left to figure it out myself is what's scary especially when headaches are bad. Thanks again for your advice.