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
JanSP Mrs_Hobbles
Posted
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
Mrs_Hobbles JanSP
Posted
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.
Anhaga Mrs_Hobbles
Posted
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.
alley2 JanSP
Posted
JanSP alley2
Posted
Hello alley2 I don't know if the Actemra is doing anything as fortunately I haven't had a flare since I've been on it. I give myself an injection ever other week. Except for my first flare which I got when my pred was down to 1mg the other flares came a few months or weeks after I was off the pred. I did miss one injection of Actemra per the rheumy's instuctions while I was on antibiotics for my lungs. I've had two chest xrays and will have a CAT scan on Oct 5. I'm not coughing now. I was hardly coughing when this started but my GP heard something listening to my chest and ordered the xray. I seem to not be expanding part of one lung. Maybe that is one of the reasons I'm out of breath so much. I can't have an MRI since I have a pacemaker. I hadn't had any heart problems. This electrical problem developed very quickly five years ago. Could it be part of this autoimmune mess? I was also diagnosed with a liver autoimmune seven years ago when the GCA started but now the docs are calling it a fatty liver. The docs don't have an explaination for my AMA's, a marker for primary biliary cirhosiss. I'm not even a drinker! Maybe I should be.
My older son is a doctor in the Air Force. He's board certified in two areas but unfortunately neither is rheumatology. Jan
Anhaga Mrs_Hobbles
Posted
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!
Mrs_Hobbles Anhaga
Posted
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.
Anhaga Mrs_Hobbles
Posted
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.
Anhaga Mrs_Hobbles
Posted
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.
Susanne_M_UK Mrs_Hobbles
Posted
Mrs Hobbles, I have GCA (diagnosed November 2014) and have finally managed to taper to 19mg pred. My rheumy, like most of them, also wanted me to taper far to quickly and I've had several flares, resulting in me having to go back up to 40mg many times and then start the process again. She has finally recognised that fast tapering doesn't work for me.
Like you, my GP prefers me to talk to rheumy about anything GCA related, but the rheumy always sends her an update letter whenever I've had a consultation, so she is up to date with my treatment.
Are you not able to give your rheumy or their secretary a call regarding the headaches? Whenever I've had problems, I give the Secretary a call and hear back from either rheumy or secretary depending on the severely of the problem.