GCA & ANEURYSMS. ..

[beringer]

Hi, Hope all are doing good. I've had GCA PMR 3 years now, I was on preds 3 months then on Actemra 2 yrs 9mos then I got a lung infection & had a 2 week hospital stay & home for 6 weeks before I felt well enough to get out, I called for my Actemra n fusion & needed other Drs note of approval first, now 3 mos have gone by, so I saw my GCA Dr. first, he felt I could stop all treatment since no symptoms off drugs. Now I'm going on 5 months with out drugs. Has anyone done this, will it come back or is it gone firever??? I now hack a 4.7. Thoracic aorta ascending aneurysm, caused by GCA. Has anyone else done this, where the GCA just stops,,,,, or gotten the Aneurysm? ? Now I am so anxious to hear from You. Please let Me know! Happy 4th to all!!!

[30048]

Happy Fourth of July to you also ! I have to admit that this is WAY out of my league. It appears that the Actrema , which is just a steroid sparer, or so I thought, cured your GCA . If so that is huge. As to the lung infection and the anurysm......as I said...way beyond me. Hope all goes well for you.

[Celtic PMRGCAuk volunteer]

Beringer, good news to hear that your GCA has gone into remission after 3 years, but I'm sorry to hear that being diagnosed with an aortic aneurysm has put a dampener on your good news.

Aneurysms are a known risk with GCA and for this reason , It is recommended that everyone diagnosed with GCA should have an X-ray of their chest and stomach carried out every 1-2 years, both during the course of GCA and following remission indefinitely. My GCA went into remission 4-5 years ago, and I have repeat aortic aneuysm checks every two years at present - fortunately all is well.

Hopefully, your aneurysm is stable and won't get any larger but no doubt those treating you will continue to monitor you for any change. Do seek confirmation and reassurance from your doctors on this.

I hope that helps to reassure you - meanwhile rejoice in being GCA-free.

[beringer in reply to Celtic]

Thank You for the info, I did not know Aneurysms were possible with GCA, this one was found when I was in hospital in March, they were trying to find my lung problems, which turned out to be MRSA & pneumonia, made it thru that only to find out after I was out of hospital & returned to Dr for recheck. The least they could have done is tell My husband. Oh well so far so good, I still tire so easily, but a few minutes rest & I'm up & busy again, Dr said that's what's left of GCA, do You feel that way? IM not trusting My Dr. Much now, after not telling me about the Aneurysm possibilitys. Thanks again.

[Celtic PMRGCAuk volunteer in reply to beringer]

Beringer, it isn't surprising that you find you tire easily at present. It can take a year or so for our bodies to return to their pre-GCA/steroid state after coming off treatment, probably due to so many hormones trying to return to 'normal' after having been disrupted by the steroids.

Added to that, it sounds as though you have been going through a very rough time with MRSA and pneumonia, so your body has had a double whammy of problems attacking it. My hubby has just got over pneumonia and pleurisy, and his consultant said that it would take a good one to two months to return to pre-illness fitness. But fortunately, unlike you, he hasn't had GCA after-effects to contend with as well.

As to whether I still tire easily, well it seems I can keep going from day-to-day with whatever comes my way without noticing any tiredness but if I sit down at any time during the day or evening, say to watch a favourite programme, I usually find I wake up to see the credits rolling, having missed the whole thing! A touch of Anno Domini as well, methinks!

I don't think your Dr is unusual is not telling you about the aneurysm risk - my wonderful rheumy didn't mention it until I was nearing remission. It is mentioned in the Guidelines for the Management of GCA, BUT how many doctors read it?! It states:

"Patients with GCA can suffer ischaemic complications in non-cranial vascular territories. The incidence and predicators of large-vessel involvement were studied in a cohort of 168 patients over 50 years. Twenty seven per cent patients experienced large-artery complications of GCA (18% aortic-aneurysm or dissection, 13% large-artery stenosis)....."

My rheumatologist advises that chest and stomach X-rays are sufficient monitoring UNLESS an aneurysm is found, in which case regular ultrasound checks are then necessary to measure the size of the aneurysm to ensure it remains stable. Do ensure that you are followed up with these.

So do continue to take special care of yourself and hopefully you will soon find the tiredness reduces as your body fully recovers from both GCA/steroids and your recent nasty bout of illness.

[Hidden]

Hi Beringer,

I have a thoracic ascending aneurysm as well although not as dilated as yours. A chest X Ray isn't sufficient to measure the diameter, you should really be on at least a yearly monitoring schedule to check the size. I have a yearly MRA, once aneurysms get to a certain diameter they require surgery as the risk of them rupturing increases.

[Ankara]

I have GCA diagnosed over a year ago although biopsy and bloods ok have pain permanently on the right side of my face especially on reducing prednisone have been on 60 mgms now down to 25 mgms and 25 mgms of sc methotrexate have eye problems and to finish have a cerebral aneurysm to be seen by neuro people do not know whether there are other aneurysm as yet all a bore are all connected as beringer?