This has been the most difficult week since I was diagnosed with GCA/PMR. The GCA diagnosis was in July while I was on 40mg of Prednisone. I had some visual changes in my left eye. After that, my Prednisone was raised to 60mg.
Since then, I have also been taking Mehtotrexate, now weekly injections. I also have glaucoma, and the intaocular pressure was rising to dangerous levels.
At this point, I am taking 30mg of Prednisone. Anyway, after helping my daughter and her family for 2 weeks, I experienced a severe headache in the frontal area, and explosive headache/pain on the top of my head. This headache continued every day, with some relief with Norco. I also had some temporal pain.
After having a CT scan of my head which was normal, and many lab tests, I experienced one day of a fever. My ESR had gone from a normal range to 55, and my CRP had gone from a normal range to 4.5 in one month.
My rheumatologist, neurologist, and GP all felt I needed to go to the Emergency Room to be evaluated for possible meningitis. So, yesterday, I spent the entire day in the ER. Meningtis was ruled out after a spinal tap. The ER doctor was wonderful, and also gave me IV pain meds. which helped the headache, olue 3 liters of IV fluids. He talked with my rheumatologist, who then talked with me that perhaps this is a GCA flare up. We decided to raise the Prednisone to 40mg for now.
The headache is much improved today, but I am exhausted and weak from all the paiin.
I feel rather like a wet noodle that has been flung at the cupboard once to many times to see if it is done!
Have any of you experienced these kind of headaches or some other symptoms of GCA while still on fairly high doses of Prednisone? I certainly don't want to experience this kind of situation again if possible.
My husband and I are travelling to Philadelphia and Annapolis next week for a wedding he is officiating. We will be going on the plane. We have known the bride since she was born. I'm just going to have to be very careful, and rest when I can.
Thanks for bearing with my lengthy post. Even the doctors have been mystiied exactly what is going on. I appreciate all of you so very much.
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Joyful13
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While 40mg of pred is the usual starting dose for GCA - if the patient has visual symptoms they use 60mg or even more to get the inflammation under control. When I started to read your post I was assuming you were going to say you'd had a headache that was GCA - the tiny bit with the title of the post I got in my email box was enough for me to be ready to tell you to go straight to the ER. A dose of 30mg is not enough in most cases of cranial GCA (in the arteries in the head) to prevent it flaring. Flares are common in the first 18 months after a diagnosis of GCA and the most common cause of flares is reducing the pred dose too far or too fast - not said by me, said by top experts in GCA in the USA in a medical publication.
If you were diagnosed in July with visual symptoms then most doctors would have you on not less than 40mg after 3 months. Research done in the UK in the last couple of years has shown there is still evidence of active GCA and other forms of vasculitis even after 6 months on high dose pred (that's above 20mg). I find it concerning that they suspected everything except GCA - that should have been the FIRST port of call, not meningitis. "They were mystified" is not a particularly comforting statement about their level of knowledge in the field of GCA. As soon as that headache started your pred should have been raised as the first line approach - it was left for a week and the inflammation increased.
You have a serious illness by any standards - if it is in the cranial arteries it certainly is. You should be resting, putting yourself first and not helping the family - I know it sounds hard but that's the way it is. And for your trip to the wedding - no, not "resting when you can" but the resting comes first and you do other things when you can. Ask for assistance at the airports so you don't have to hurry, carry things, hang around with nowhere to sit comfortably. Otherwise you risk your trip being for nothing and you being too ill to get to the wedding which is the whole point of the trip.
Thank you for your information. I told my rheumatologist yesterday that II need to reduce the Prednisone slower. Do you have the link or name of the U.S. medical publication about GCA; I would like to read it and pass it along to my rheumatologist.
Your words about REST really speak to me. I haven't slept well since starting the high doses of Prednisone. I do try to take a nap during the day. I cancelled all my activities this past week with the headaches. The severity of the headaches left me so exhausted. I still need to come to the gravity of this illness. I will definitely keep your words "resting comes first," in my mind, and share this with my husband.
Perhaps, I am still in denial, as years ago I had a temporal bilateral biopsy for GCA which was negative. At that time, the rheumatologist started me on 60 mg of Prednisone, but as soon as the biopsy came back negative, he had me quickly taper off the Prednisone.
Since then, doctors have vascillated about the GCA. My lack of knowledge about GCA during those years certainly didn't help my advocating for further testing. I have been on several short rounds of Prednisone since then.
Are there any protocols for tapering from high doses of Prednisone. I'm taking the weekly Methotrexate injections in hopes that I would be able to decrease the Prednisone more rapidly.
I'm sorry, no I don't have a reference handy - I just know I read it in either a review or a textbook about 6 years ago. I will try to find it but I don't hold out much hope. I kept references for a lot of things which subsequently disappeared behind paywalls!
The temporal biopsy is only positive in about half of GCA patients - the symptoms are always king and your rheumatologist should have known that. It is always a problem later when there isn't a positive TAB and if you had a bilateral biopsy then there is nothing left to have a go at! I have to say - I'd be looking for a more GCA-experienced rheumatologist because he hasn't done too well so far. There is also the point that not everyone responds the same to pred and it may well be you are one of the third of people for whom a higher dose is necessary. In addition, methotrexate is felt by many experts to have no place in GCA. It MAY allow more effect from a lower dose in PMR but it is still greatly disputed and it seems to lull them into a sense of false security, assuming they can order a reduction when it isn't advisable and symptoms are recurring.
5mg at a time is more than enough - 2.5mg every week without flares works out at 10mg a month - and no-one should be expecting you to reduce any faster than that. Even so, when reducing we have always suggested to people they should clear the decks and lie low to give their body the best chance. I'm afraid you cannot expect to carry on with normal living for the moment - and you have a new normal to adjust to.
joyful, it would seem that the almost immediate improvement in your head pain following increasing your steroid dose back to 40mg just yesterday very much confirms your rheumy's suspicion of this having been a GCA flare. Hopefully, s/he has suggested repeat blood tests in a week or so for further confirmation along with your symptoms at that time.
The flare may have been caused by simply overdoing things whilst helping your daughter and family for a couple of weeks. You are in the very early stages of GCA, and, as selfish as it may sound, rather than helping others, it is you that needs as much help as you can get to get that inflammation under control and keep it there.
After the problems you have experienced, I would feel very concerned about facing a flight at this stage - it certainly isn't something that I could have attempted whilst on 40mg for GCA.
I appreciate your reply. I will repeat the lab work when I return from my trip.
I may need to increase the Prednisone even higher if the headaches return. These recent headaches were so debilitating.
I also need to be drinking a lot more water. We continue to have weather in the high 80's here in California. We are in a severe drought.
I know that I overdid helping my daughter and grandchildren. They are now living in Maine for the past week. I will miss them so much.
Thanks again for your concern and helpful words.
I agree with PMRpro - sadly, "vasculitis" is not Neurologists "usual cup of tea". Perhaps, Meningitis is thought to be the one to consider first but not V. Hence deaths / morbidity in patients whose V have escaped diagnosis leading to death / disability. My GP tells me that GCA is still considered "rare" esp. if you are under / around 50 yrs old. Neurologists don't know enough about V (except very few, one can count in one hand) - they usually don't think about anything "unusual" or "obscure". V is still very unfamiliar in medicine / neurology. They think of MS or Meningitis etc (you know those "usual names" in Neurology) ..but not V. Neuro might think "oh yes, heard about it, I vaguely recall, when I was still at medical school once upon a time but it's a rheumatic disorder..not sure what V is exactly"..etc etc..)
I appreciate your insight about the neurologist's view on GCA versus the more common diagnoses. I had seen her several years ago with my aptypical hemiplegic migraines. She helped me a great deal at that time.
When I saw her with these headaches, she said that she was perplexed how to really help me. She was the first of my 3 doctors who said I needed to be evaluated for meningitis, then the rheumy and GP concurred.
It takes a wide perspective when you are the patient and don't know what's happening. I do trust my doctors, but need to keep aware of the flare ups with GCA.
As a GCA/PMR sufferer,I have experienced 2 major flare ups with eye problems again. whilst on 50/33mgs Pred. I had the worst head pain and headaches ever which lasted several days.
Rheumy was baffled as to how that could happen and hinted that i was imagining it !!!
and sent me info about somatisation.
My GP raised me to 60 Pred & after 4/5 weeks everything had settled down again & I began reducing in 5s & reached 50.
When it happened a second time some weeks later, I raised myself (informed my GP) back to 60 & waited for everything to settle again. I did tell Rheumy eventually whose opinion was based around "We're trying to go down, not up"
This time, I'm following 2nd opinion's suggestions & am reducing by 2.5s, spending 3/4 weeks at each new dose, then checking blood tests/how I am generally and CLEARING MY DIARY for a whole week.
I've reached 52.5 & will probably stay there for a bit as I have to load up with Amiodarone to deal with AF which came out of the blue last week & put me in hospital for 5 days, refusing to respond to various drug treatments & cardioversion.
However when things settle, I'll be reducing another 2.5 and as others have said, you need to put yourself first and do what's important for YOU to get your inflammation under control.
I have found that car journeys exhaust me & I just know there's no way I could travel on a plane! I had to say "no" to a journey to Scotland to attend my first great niece's Baptism. It broke my heart but I knew I'd be risking another flare up and losing all the benefit I'd gained up till then.
I'm glad you're finding relief now from the ghastly pain. Please DO look after yourself.
I also developed a/f - and the cardiologist is confident it is due to the autoimmune part of PMR/GCA having damaged the sinus node and the electrical cells which govern heart beat. I am on propafenone and BP meds - very successfully. They didn't bother with trying cardioversion.
Thank you so much for sharing about your GCA flare ups. It really helps to put this past week in perspective. It is also very helpful to know how you are tapering the Prednisone. I am taking the Methotrexate injection once weekly with the hopes that I could reduce the Prednisone more quickly, but that remains to be seen.
I'm so sorry you have AF. Bummer! I hope you will be feeling better soon. My sister and mom both have AF, so I've learned a lot the past couple of years what all that entails. We are certainly called to be survivors!
I learned a great deal from your info and experiences.
Hi, Joyful13, what a week for you! I hope I can be of some consolation (not a lot I'm sorry).
The information you have provided goes an awful long way to helping me understand how many "variants" this illness can manifest itself. Great big thank you to you for that.
I do hope your pain subsides and that you get some "proper" answers soon.
Thank you so much for sharing your GCA diagnosis and experience. How terrifying this must have been for you, but I am so glad to hear that the vision loss was temporary.
I have been continuing on the increased dosage of Prednisone 40mg since the terrrible headaches. Overall, I am doing much better. The headaches have pretty much abated right now.
However, my husband and I are on at 9 day trip right now. Today is the wedding which is the reason for this trip.
My husband, a retired pastor, is officiating. It is going to be a very long, wonderful, busy day as was yesterday. Fortunately, we are staying with the bride's family whom we have known for over 30 years. They know that I need to rest whenever possible. Yesterday, I took over an hour nap before all the evening celebrations.
By the time I went to bed, my ankles were very swollen (new symptom), I had a headache, and my whole body ached. I took a strong pain medication which really helped some of the pain.
As I write this, I wonder if I should raise my Prednisone a little today to help with all the activity and stress, even though it's happy stress.
I will be talking with my rheumatologist when I arrive home. It will be interesting to repeat my ESR and CRP again, since returning to the present dosage.
I also need to find out why I am having so much pain in my upper back, rib, and neck area since the severe headaches. The Prednisone never has relieved these symptoms, even when I was on 60mg.
Thanks again for your reply. It's given me more food for thought. I hope you continue to improve.
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