Giant Cell Arteritis/Never ending
Posted , 23 users are following.
I was diagnosed in October 2003 with Temporal Arteritis (Giant Cell Arteritis). I had a biopsy which was very suspicious but not conclusive however, I was immediately put on intravenous 80mg steroids, in hospital for 2 weeks. To this day I am still suffering badly with Temporal Arteritis. I have been on steroids now for 5 years and have been on a roller coaster ride with them all the time. I have been seeing my eye specialist every two months. My ESR is fine but my CRP is always elevated as soon as she tries to bring down the steroids.
Been through all the tests you can have MRI's the lot, also feel like a guinea pig at times.
As some of you know the side effects are terrible, I have put on 4 stone and my face is all puffy and round. It has totally changed my life and I get very depressed. I used to be a special needs teacher and had to retire due to ill health.
This disease is not to be taken lightly anyone with this disease make sure they are checking you thoroughly and don't stand for any messing about., I always insist on seeing the top specialist, it doesn't help that I only have one good eye and that's the one mostly affected.
I have now been prescribed by the Rheumatologist Azithoprine (cant have Methotrexate as my liver is damaged) which I should get next week. I am hoping this is going to work for me and I will be able to come down to a reasonable dosage of steroid, after five years I am still on 15-20mg cant go any lower as the pain is to intense.
The thing that gets to me the most is I was only 46 when diagnosed and all they have been saying to me over the years is \"your to young to have this\", well obviously not as I have suffered pain like you wouldn't believe, hospitalised three times and even Morphine doesn't touch it when it gets going.
Best wishes to all of you who are suffering from this chronic disease, I know exactly how you feel.
7 likes, 54 replies
mandeyj Guest
Posted
I can't believe what I have just read on your blog about your disease its like reading my own life story, I too have had GCA for 5 years, PMR for 6 months and was only 50 years old when the diagnosis was made and told I was far too young. I had a non conclusive biopsy and was kept in hospital for 2 weeks, was started on 120mg intravenous prednisone. Most of the time my ESR is ok up and down, my CRP levels are usually up. I see opthamologists regularly, immunologists regularly and of course my GP. I have lost some vision in my left eye with retena damage.
I am also on 30mg of oral methotrexate but it was so hard on my intestinal system I was left with bowel incontinence so it has since been changed to injections once weekly and the bowel problems subsided almost immediately, thank god.
T too have the puffy face and a massive weight gain of nearly 30kg (4.7 stone) its depressing and tiring carrying around all that extra weight. I am finally down to 10mg of steroid dose and was told that we are going to really cautious dropping down 1mg at a time.
Sometimes I feel that no one else understands what its like to have this awful disease so I feel better knowing there are people out there going through the same thing.
I noticed your post is 9 years old and I just wondered did you ever get rid of this disease or does it still haunt you? I do hope you're well now!!
EileenH mandeyj
Posted
I think it is unlikely that "Guest" will still be around on the forum - though I'd like to be proven wrong! There have been 2 revamps of the site since then and many members got "lost" or were just plain discouraged. It is also likely that there will be few current members of the forum following this thread - MrsO will!
However - if you start a new thread you will get some company from newer members. And if you go to this link:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
you will find our "reading list" and links to other forums plus a link right at the bottom to a "zero pred discussion" which is encouraging whatever stage you are at.
It IS possible to lose weight while on pred - a lot of people on the forums have achieved significant weight loss by cutting carbohydrate drastically. I lost 36lbs or so while still at above 10mg of pred by doing that. Pred changes how our bodies process carbs - and encourage deposition of fat in the usual places. Cut the carbs - less to encourage the insulin production that does it.
Teri823 Guest
Posted
Hi. I am in the process of diagnosis of Temporal Arteritis. Why were you put in the hospital for 2 weeks if you weren't positively diagnosed? IV steroids at a high dosage? We're they afraid you would lose your vision or stroke?
EileenH Teri823
Posted
Teri823 EileenH
Posted
Hi Eileen, realized it was 9 yrs old after I replied to the post. I think I was trying to find an answer. My question should be about the timeline and symptoms for blindness and should I go to the hospital? My neurologist says he thinks Temporal Arteritis is what I have. Going to have a 2 he MRI on the 15-Dec. I'm a bit concerned. Thanks Eileen.
EileenH Teri823
Posted
If the neurologist is thinking GCA he should really have you on a high dose of pred already. I may be wrong - but I don't think an MRI shows anything, if it did then they would use it, they are accessible. A temporal artery biopsy (TAB) is the gold standard - but while a positive one is 100% certainty, a negative one doesn't mean you don't have GCA, it means they didn't find the giant cells they were looking for. The bottom line is that GCA is a clinical diagnosis, made on the basis of signs and symptoms. It is felt to be negligent NOT to offer pred immediately, even without a TAB result.
There is no "time line" for GCA, a small proportion of patients wake up with loss of vision having had no warning symptoms at all. It is like a stroke affecting the blood supply to the optic nerve and the final occlusion of a narrowed artery can happen at any time. On the other hand, there are people who have grumbled along for months without loss of vision. It all depends which cranial arteries are affected - even the temporal artery is not always involved, just one reason for the lack of reliability of the TAB.
If you have ANY visual symptoms yes, straight to hospital, no waiting for a doctor's appointment. You need high dose pred immediately, sometimes i.v. as that works immediately, oral pred takes a couple of hours to get into the system. That is probably why the originator of the thread spent so long in hospital. The iv pred may be as much as 100mg/day, usually for 3 days. Then you still have a 2 week wait to be sure the threat to vision is gone.