GCA
Posted , 6 users are following.
My biggest issue right now is GCA.
Have had a headache for 3 days with a burning sensation. I've had this before.
Does anyone else get that burning/ stinging sensation with a headache?
My doctor wants me as low as possible (or even off) the prednisone asap.
I was down to 12.5 mg. of prednisone last month but was getting so many headaches my rheumatologist bumped me back up to 20mg. with hopes of lowering it when I see him on Feb. 12. Still getting more than my share of headaches.
I am supposed to start the IV of acterma in the next couple of weeks. How long can you be on acterma & what comes next?
The PMR is manageable at the moment. I get neck & shoulder pain but that's not nearly as upsetting as the headaches right now.
The fatigue is just overwhelming.
Some days I have a difficult time getting out of bed. Last night I went to sleep @ 1 a.m. & didn't get up till 12:45 p.m. & I could have just stayed in bed but my hubby was waiting for me so we could have lunch together.
I am blessed to have such a supportive & caring husband. He drives me 4 hours round trip to my doctor every month.
We are both just so happy to have this doctor to take care of me we would still go to him if it meant a overnight stay. Must have confidence in your doctor or it's time to find another one.
Thanks for listening to me.
1 like, 7 replies
EileenH darlene36688
Posted
I don't quite understand - who wants you off pred asap? Your rheumy or your "doctor", I assume GP/internist?
If your rheumy is starting you on Actemra in the next fcouple of weeks why on earth is anyone so desperate to reduce your pred dose so quickly? If you have GCA, until you start on Actemra the only thing between you and potential visual loss is pred. You need enough to manage the inflammation and it sounds as if you are not. 20mg is not a GCA dose - the minimum GCA dose is 40mg and if that is what you have, that is what you need. Many patients are started at 60mg if they have visual symptoms - and some people get as much as 100mg i.v. if they have any loss of vision.
You will be on Actemra until you have reduced the pred as low as you can - and there is no way of knowing how long that will take. Some people are able to get off pred altogether, others just get to a low dose, well below 10mg.
darlene36688 EileenH
Posted
My rhuemy is taking care of all the GCA...PMR...Sjogerns syndrom.
He is concerned about long term high dose of prednisone. I know he won't lower it this month.
I keep a daily journal & he looks it over & examines me.
I was started on 60mg, then 40mg then 20mg, then 12.5mg then back to 25mg. I will mention to him about the doseage of prednisone to see what he says.
It's a real rolla coster.
Right now I'm concerned about the burning/stinging feeling I'm getting.
Thanks for getting back to me so quickly. I value your opinion.
EileenH darlene36688
Posted
It shouldn't BE roller-coaster - it should be a steady slope downwards. It works so much better.
I'm sure he IS concerned about long term high dose pred - and rightly so. However, once you are down below 15-20mg the problems fall away considerably and all that happens when they rush a patient down to too low a dose is that they flare and have to go back to a higher dose - and after a few days have lost all their perceived advantage of reducing quickly. Plus when you get into a yo-yo pattern with the dose it becomes increasingly difficult to get flares under control. Top experts in the use of steroids have said that in TAPERING (as opposed to reducing to stop pred) no dose reduction should be more than 10% of the current dose. Doing 5mg every 2 weeks does the same as 10mg every month - and 10mg per month is a far more usual reduction plan in GCA than your rheumy's precipitate drops of 60/40/20. There is a scientific paper reporting the evidence of the presence of inflammation even after 6 months above 20mg - so shooting down to 12.5mg in just a few months is very unlikely to work in the longterm.
linda38899 darlene36688
Posted
Your headaches are a huge issue and Prednisone is the gold standard- I am a GCA with diagnosed confirmed from temporal artery biopsy patient-When I was in the hospital I had 1000mg= 1gm infused daily for 3 days and then 60mg orally daily for a month and then decreased 5 mg a month- I was on prednisone for 18 months. It is important to taper slowly and not to chang the dosage drastically. Actemra was just given the indication to treat GCA when prednisone is not working or the patient has an intolerance to prednisone.
I would def ask your doctor to go over the side effects of actemra so you know what to be aware of.
I wish you well and a speedy journey to relief.
darlene36688 linda38899
Posted
Linda.....Thank you for your response. I'm so glad I found this forum.
I always get ideas for questions to my rheumatologist.
You really went thru a lot with the IV of prednisone & then on & on.
I feel certain my doctor will not be able to lower my doseage, maybe even raise it.
I will ask him about the acterma. I have done a lot of reading on my own but want to hear what he has to say.
My headaches just appear too frequently.
This headache is on day 3 now. Don't know how much longer it might linger.
I'm glad I see my doctor soon.
I've been on prednisone since July 30th, 2017
linda38899 darlene36688
Posted
My doctor was always adamant about contacting her when I was not feeling well. Because I am a pharmacist in US, she was very comfortable with me and felt I was very in tune with how I was feeling. Did you contact your doctor to tell him you were having this headache for 3 days- He might tell you to increase your dose now or might want to see you earlier than your scheduled apt.
Feel better-
darlene36688 linda38899
Posted
My doctor is at (MUSC) Medical Univ. of South Carolina in Charleston.