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!
Hi there. We had a bit of a discussion before but I get this type of headache with another form of vasculitis. Did your biopsy confirm gca?
I think I would increase the pred to see if it helps the headaches.
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
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.
Hi, Mrs Hobbles, I have GCA.there are three years. I do not have headaches though.
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
I am still here - my reply ran too fast.
For us having GCA the most important point is the vision.
How is yours?
Hope all goes well.
Take care,
iellen
Hi! So sorry you're going through this.
I've had GCA for seven years with a positive biopsy and 86 SED rate. Just to make matters more confusing SED and biopsy don't always tell the whole story. For me it does. My SED is usually between 2 and 4. Unfortunately I still get headaches. Most of them are not the severe kind. Three times when they were really bad my husband took me to the hospital and it was a flare. I had to go back to 60mg pred. This last flare 60 wasn't enough and I was upped to 80mg. That was 16 months ago and I'm now on 6mg. Methotrexate was added during my last flare although I don't know if it's helping. I also started taking Actemra about six months ago and those two drugs are supposed to keep me from flares.
Right now I'm having more pain, lower back, legs and hips from OA, scoliosis and stenosis. I don't think it's the PMR that developed five years ago. I think that is gone. The pain is more one sided and a heavy pain killer helps.
As far as the headaches go I get them more when I'm lying down. I find it hard to know what kind they are and I don't want to keep running to the ER. Since there is that blindness factor with GCA you are new to this and you are in doubt you'd better have a doc check you. I'm in the US and if I don't like my doc I go and find another one. I don't know how your system works wherever you are.
Let us know how you are doing. Right now I'm fighting some kind of lung problem.
Jan
My feeling is if your symptoms are really bad or your vision seems affected, please go to an emergency department. If I remember correctly you started at a not too high dose for GCA and were not kept at that amount for very long. You may need longer at the higher dose. But you really don't want to start yo-yoing. Best to get expert medical advice which you should get in emergency. Short of that, do as others suggest and raise your dose significantly and do not taper again until your appointment. Good luck!
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.
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.
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.
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.
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.
Hi Jan, you definitely have alot going on. It's interesting that you were still having headaches and 3 trips to A&E despite being on treatment. You've done well to reduce to 6mg from 80. I'm with you about not wanting to run back to A&E every time I get a bad headache but with the consequences of GCA it's a worry. I have a headache hovering all the time since the last bad one on Thursday and woke this morning with PMR pain strangly so will increase back to 30mg and hope it'll all settle. If not I'll have to get back on to Rheum doc. I hope you'll be ok with the lung problem and thanks for your thoughts.
Hi, I was on 60mg pred for about a month then reduced to 30mg, and last 11 days at 25. I was going to increase back to 30, but do you think I should go higher? My Rheum doc want some down to 15mg in another month but I don't think that's possible given how I'm feeling. Hopefully I won't get another bad headache but if I do, I will have to get some expert advice. Thank you for your advice.
I've no personal experience of GCA, but I have heard that the inflammation can still be quite significant, even if symptoms are mostly gone, for up to six months. I have also read on this and the other forum, healthunlocked, people advise against too big a reduction too early. When reducing from the high levels it is possible to reduce in big chunks - the 10% rule allows that - but need to be careful not to do it too soon. I'll see if I can find info about this and private message if I do.
This is copied from the Bristol Paper. You'll find a link to that at the beginning of this forum.
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
60 mg daily for four weeks, or until remission induction, then • 50 mg daily for four weeks, then • 40 mg daily for four weeks, then • 30 mg daily for four weeks, then • 20 mg daily for four weeks, then • As per PMR regimen for 104 weeks
As you can see, it's much more conservative than what you've been recommended to do.
Your eyesight is more important than anything. It's not like you'll be running into emerg with a head cold! And if you have to wait over a month for the doctor appointment, what choice will you have if things worsen. That's what they are there for. Because you are now on a relatively low to moderate dose and the possibility exists that your initial inflammation has not been properly cleared, then I think you are justified in being overly careful. The best scenario is that you are "only" experiencing pred withdrawal, but if so even that indicates the taper is too fast for your body to adapt reasonably comfortably.
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!