At age 34, I had a nervous breakdown with depression and loss of memory. I had 3/4 shock treatments, which left me with severe headaches after.At age 59, I had GCA. I am now 69, and been on Pred. for 10 years, and am currently on 3mg. I am wondering if there is someone who could tell me if those treatments could, in any way, have led to GCA?
karools16
I don't think anyone here has that sort of expertise. However, with that sort of interval I can see no real reason why. Autoimmune disease is a malfunction of the immune system and while trauma, stress and environmental and infectious agents are thought to contribute to overloading/deranging the immune system there is no single thing that can definitely be said to do it. You will rarely find people with identical medical/exposure histories - not even flu jabs or a given illness are common to us all.
I think it unlikely. There are as many theories about 'triggering' GCA (and PMR) as there are people with those conditions.
Flu jab, swine flu jab, virus, and flu itself have all been put forward recently, while I had a very gradual onset of PMR - talking years, not months - and it is nigh impossible to say what the original trigger may have been. GCA came along 5 years after the PMR diagnosis.
3mg Pred is a very low dose and you shouldn't have any side effects. However, you are asking all the adrenal and hormone glands to wake up and do their job. Very often they are reluctant to do this. They've been having a lovely lazy life and don't want to work!
Regards to you.
Thank you polkadotcom. Yesterday, I should, according to my Neuro, have reduced to 2mg, as he wants me off them by Dec.Is it odd if I just want to stay where I am, as , with every reduction, I am nervous, esp. at present, waiting for results of intensive lung tests for water on the lungs? My adrenal glands are functioning? at 33%.
Hi karools16,
Stress is a big factor for many of us in the development of PMR/GCA. It sounds like you've had more than your fair share of it. I would lay the cause at that door rather than the treatments you received, although I do understand your thinking. It was all part of the same bad period, then you got those headaches. It sounds like you've been doing well reducing your Pred. To 3 mg. Go well, it's natural to feel sad for your young self. You got through though. Bless you.
Thank you SheffieldJane. I sometimes can't figure out why I am still on Pred, after 10 years, and there are some folk, on this forum, who seem to reduce in weeks/days. I know our situations are all different, but I do still wonder..........
No-one with PMR or GCA reduces their pred dose in weeks or days, I can promise you that! There is certainly no-one who has managed that on this forum that I have come across.
If you are still on pred after 10 years - have you tried a very slow reduction in small steps to see if you can manage without? That is the only way to know. Reducing in relatively large steps after that amount of time is unlikely to work but the dead slow approach here
healthunlocked.com/pmrgcauk...
is a good way to try an even lower dose. Do it in 1/2mg steps at the most and even double each step, doing it twice, if you want to go slower.
You cannot know without trying and if you are functioning well on 3mg that does suggest your adrenal function is still there/returning. You don't get a proper answer when you are still on pred, all it can tell you is that the adrenal glands are capable of producing cortisol if required. The results MUST be interpreted differently in view of a patient still being on pred - the real answer is found by the empirical test of reducing the pred dose further! My local specialist is confident that if the patients reduce slowly enough there are very few who won't succeed.
PMRpro, I made the statement about folk reducing in weeks/days because I have read posts where folk say it.....
I think you may have misunderstood what they mean - I have read every post on this forum for the last 4 years, I have never come across anyone who can reduce from starting to low doses in weeks/days unless they are reducing quickly to get to a low dose or off pred for their rheumatologist to see their symptoms without pred. You can't do it if you really do have PMR or GCA.
Karools, I have been on Pred for 15+ years, and I will be on them for life as I have secondary adrenal insufficiency. Does that bother me? No. I only remember that fact when I reply to posts like yours!
GCA and PMR comes when they like and go into remission when they like, so the answer is 'how long is a piece of string'.
You are not the only one who is still on pred 10 years down the line, which is no consolation at all.
One thing, did you have an Acth test for your adrenals function - if so 33% is low and I would be asking if you should be reducing at all.
Sambucca. As you rightly say its no consolation knowing that there are those also on Pred, after 10 years and more, but sometimes it seems as though I am the only 1. Daft.I don't know what an Acth test is, and, for the moment, I am staying on 3mg until I get the results of my lung tests, from my Respiratory Consultant, who mentioned that he wants to increase them to 20mg.
The ACTH test - otherwise known as a synacthen test - is a test done to see if your adrenal glands are CAPABLE of producing cortisol:
"The ACTH stimulation test measures how well the adrenal glands respond to adrenocorticotropic hormone (ACTH). ACTH is a hormone produced in the pituitary gland that stimulates the adrenal glands to release a hormone called cortisol."
In some people the adrenal glands don't return to normal functioning
after being on pred for a long time - the test shows whether they are going to be able to. If they aren't capable of making cortisol when required then there is no point continuing to reduce to zero - you will need some replacement pred to make up for it.
But honestly - you aren't the only one!
Thanks for that explanation, PMRpro.Years ago, my Neurologist told me that when I came off Pred, he was sending me to a hospital to see an Electrophysiologist for a test to see whether my adrenal glands were/could function without the Pred. Sounds very similar to what you have said.Until I found this forum/read Kate Gilbert's book, I almost thought I was the only 1 with GCA,because I never heard of anyone with it, and people I know don't understand it.
Tapering Adrenals and Shock
Shocked at the colour of my teeth
What a shock
Bit shell shocked !!
GCA/PMR and spa treatments
