Newly diagnosed Aortitis: Hello, I am new to this... - PMRGCAuk

PMRGCAuk

11,998 members21,872 posts

Newly diagnosed Aortitis

Danelady2
Danelady2

Hello, I am new to this group and asking for help. Newly diagnosed with Aortitis as of this past Saturday. They have me on a 60 mg prednisone colchicine and aspirin to start off with. My family doctor took the prednisone down to 30 mg as I have been dealing with helucinations. Where do I start? Has anyone else had issues with prednisone? What is in front of me ? I need to gain knowledge on this and lean to cope. Funny that the hospital told me what I had but not anything about it.

12 Replies
oldestnewest

Knowledge is power, so follow this line and then read and download.

pmr-gca-northeast.org.uk/as...

Need answer to this quesiton. How long did you take the 60mg before the GP dropped you by 50% which is too fast a drop?.

BTW it is called Giant Cell Arteritis.

Hello Danelady2 and welcome to the site. I do not have personal experience of high dose Prednisone Colchicine. However,nothing you say surprises me. It must have been a very frightening. This site mainly deals with GCA and PMR, there maybe sites that deal specifically with Aortitis and you would be talking to people who know exactly what you are up against . You will get more responses when Europe wakes up. You have taken the first step in posting on here about your horrible Prednisone experience.

PS having read a little about your inflammatory condition I see that it is closely related to GCA so I feel sure others will come forward to support you. Kind regards, it is so much to take in at first and they don’t mention the side effects at all. You must feel quite shocked!

Hidden
Hidden

Welcome I too was diagnosed withGCA in Dec. Was on 60 mg Pred and my main problem was muscle weakness but the high dose at first is to protect your eyesight. I am now down to 9 mg feeling much better but still have to pace myself and take plenty breaks during the day. You can get a very helpful booklet from Arthritis Uk which explains the condition.

Hi Danelady - I've had GCA for 2-3yrs now - I started on 40mg pred and now down to 9mg daily. Like Balfron above I still feel excessive tiredness some days - other days I can be bouncing off the walls lol. However, I would suggest you get a full bunch of scans and x-rays to check the condition of your aorta just in case there are any aneurysms.

The weakness in the artery wall caused by gca/aortitis can accelerate aneurysm growth. I just had an ascending thoracic aorta replacement 12wks ago, and I'm due for abdominal aortic stents as soon as I'm recovered from the surgery. In short my entire aorta is being replaced with plastic tubing. The incidence of aneurysms is much higher in men than women so with luck you'll be clear - but it's important to get it checked. :)

Hidden
Hidden

Dear DaneLady2, I am sorry to hear your news... Do you also have PMR and/or/GCA? I had to look up "Aortitis," but see it often associated with GCA. I have both PMR & GCA and have been on Pred since 11/17. I've been on doses as high as 80mg and now on 40mg... it sucks! I did not get hallucinations, but always felt "weird," like a "cat on a hot tin roof!" I didn't sleep for weeks and was a bit paranoid for awhile... I am better now that I'm on a "lower" dose. Best of luck to you!

Your healthy animals are really quite beautiful!

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi Danelady,

A bit more information for you. As jinasc has said the drop from 60mg to 30mg in such a short time wouldn’t have helped your well-being. I can guess why doctor did it, but the hallucinations probably would have stopped anyway when your body got used to the dose of Pred.

healthunlocked.com/pmrgcauk...

PMRpro
PMRproAmbassador

I appreciate your GP's concern about your response to the pred but I think he needs to do such reductions in concert with the specialists. They didn't put you on 60mg for nothing.

Aortitis is inflammation of the aorta - and it can be found in cases of other more generalised GCA as well as being due to infection or just happening without having any obvious cause. Your hospital needs to tell you the source of the inflammation and tell you far more about the implications for you - and your treatment.

What symptoms do you have? How did they diagnose the aortitis? And who made the diagnosis (rheumatologist, emergency care doctor or another)?

Ooh, that's a wonderful picture! What were they all looking at at the same time?

Kindest regards to you ,l cannot add to the excellent advice already given,l just hope that you will be quickly and correctly treated for your condition.l love the photo of your pet dogs and cat,l presume the cat gets on well with the dogs,which is lovely.

I, too, have to comment on your picture of the animals. I LOVE THAT PICTURE!!! I could look at the picture all day long and be happy.

WIth that said, 60 down to 30 sounds like a big reduction. I'll let the experts address your treatment plan. But I will say that yes, Pred can be tricky, but I haven't found it to be the devil it's made out to be. There are ways to work with it. Let us know what symptoms you're dealing with and someone will have some suggestions. You've found a very experienced group here with members that are empathic and willing to help.

Best wishes. (And pet those animals for me.)

You may also like...