Giant Cell Arteritis

[ejeli]

Any of you senior members ever hear of this? One good experience of this and you will never forget it. Just beginning to recover and like a lot of these things the side effects of the cure can be as bad as the illness. Luckily I guess no permanent damage but it has been an eye opener, so to speak.
e.
Giant Cell Arteritis - Types of Vasculitis

 

[teesur]

Hello ejeli,
I have heard of it only through a 6 month or so experience with polymyalgia rheumatica several years ago. Giant cell arteritis is usually associated with it, but in my case, I did not have the arteritis, thank God!
I went from 230 pounds to 180 pounds during this six months and experienced some pain episodes that I did not previously know a man could have and live through it.
Acute kidney stone attacks, (I've had several), pale in comparison.
I know exactly what you mean by never forgetting it.
teesur.

 

[sophie]

Any of you senior members ever hear of this? One good experience of this and you will never forget it. Just beginning to recover and like a lot of these things the side effects of the cure can be as bad as the illness. Luckily I guess no permanent damage but it has been an eye opener, so to speak.
e.
Giant Cell Arteritis - Types of Vasculitis

I have Temporal Arteritis or commonly called Giant Cell Arteritis and discovered this in about '08 after surgery to biopsy a vein from the left side of my temple. My blood work showed negative for the Temporal Arteritis but later after the biopsy the vein or artery removal showed positive for the Arteritis. It caused me pain in the left side of the head at nights if I slept face down which I do sometimes. It can cause blindness as you found out after researching this. The Dr. started me out on high doses of Prednisone at first (60 mg per day) and I am here to tell you that will blur your vision in the afternoons. Cut it to 40 mg daily after about a week and in the coming weeks and months and years gradually cut down the Prednisone until I am down to 2 mg every other day. As you found out the Prednisone is to control the inflamation in the arteries and help to get rid of it. My goal is to eliminate the Prednisone and have just about got it done with no problems with my vision. I have not been able to get below the 2 mg every other day yet but working on it. I see the Dr. every 6 mos just for consultation and let him know how I am doing and inform him of the pain and we discuss lowering the Prednisone each time to try to eliminate the meds. 2 mg every other day of Prednisone is next to nothing.

 

[ejeli]

As normal for me I didn't go to the Dr until I was about dead, went from 220lbs to 190lbs in about a month. Sed Rate was at 77 when they started me on 80mg of prednisone, down to 60mg and now 50. Testing the Sed Rate weekly as they say this is the key to lowering the prednisone but at any rate no more then 10% reduction every 10 days and as you say let them know about any headaches. My Sed Rate is now down to 10. but I'm being careful, no way do I want to go back to square one. Looks like it's going to be a long haul but at least still on the top side of the grass.
e.

 

[sophie]

I think the key to administering the prednisone in the beginning is body weight. I weighed 160 lbs and never had weight loss because of the diagnosis of the Temporal Arteritis. My sediment rate was real low as best as I remember (don't remember the count) and did not indicate the problem is the reason thay had to do the biopsy on the artery. That confused the doctors because the sediment rate is usually indicator of this. The biopsy is the telling indicator if the sediment rate doesn't indicate a problem. If my experience is an indicator for you in handling this problem you should be able to tell a difference in head pain as you regulate the prednisone down over the coming months as the doctor recommends. When you get the chance Google the biopsy of the temple arteries that they do to determine proof positive if the sediment rate doesn't show a problem. I am on such a slight amount of prednisone now that I can tell for sure when I have a little pain. Prednisone is prescribed for so many ailments that it is unbelievable and one good thing about it, it is an old and not very costly drug. The drug will get a handle on the inflammation and you will begin to notice it before long. I don't know your age but like any drug Prednisone has lots of different side effects as do most drugs. My sediment rate always checked about the same so we used the pain as a common dominator in cutting the prednisone down over period of time. You will do fine in the coming months and good luck to you.

 

[ejeli]

I did the MRI, Temporal Artery Biopsy and MRA. My information says that the Biopsy often has a 40% chance of being a false negative so often they go back and do the other side. Mine confirmed the GCA so all was well. After starting the high dose of prednisone my headaches started subsiding within 24hrs. Headaches returned when they tried to drop the amount too soon so now they are going slow. The main problems right now (side effects) are that I only get two hours of sleep a night, my mouth runs a mile a minute and uncontrollable sweats. 22 hours a day searching the internet, I've come to the end of it twice but I've learned a lot about guns, GCA and other age related diseases the this 73 year old has to look forward too. Already had Guillian-Barre Syndrome, Kidney cancer, lost my shooting eye so have had to switch eyes etc. Damn Golden Years.
e.

 

[sophie]

I am 73 years old also and getting old is the pitts. I didn't know you had done the arterial biopsy. In my case that is what proved the arteritis and like you said I noticed pretty quick improvement on the head pain. When my doctor got me down to 20 mg of prednisone the next step was 20 every other day, then 15 mg every other day, then 10 mg and so on till I am at 2 mg every other day. Now this didn't happen right away and was over a period of several years. As far as sleep was concerned I did have a problem for a while and he gave me a prescrip to help me rest and it was very mild. I have no need for it now except once in a while. I guess the meds are winding you up and making you talk a lot.

 

[ejeli]

Pretty obvious isn't it?
e.

 

[4011]

OK guys we need to send up some words for these guys! When your in this kind of pain it can just knock you down and stomp you! You guys stand strong I for one feel for you. Prayers from Texas!

 

[quneur]

I've heard of giant cell. I have central nervous system vasculitis. I took predisone everytime I had an episode; anywhere from 4-6 months at 50-60mil/day. I can tell you, you don't want to be on it that long; bone loss, weight gain on your jaw area, bad acne, etc.

 

[ejeli]

Many thanks for the thoughts and prayers. Great forum and members.
e