This is my third try . I think it is my iPad that is at fault . However...I will try again as I am desperate for everyone's advice. Short summary...I have had GCA for five years with PMR for two. I have almost lost my one good eye twice. First time when diagnosed ..my optic nerve leaked and caused my vision to be impaired. The second time , after getting to 7 mgrs of Prednisone and with "great labs" I flared again. Again my vision was at risk. That was two years ago. I have been only able to get to 12 on this reduction and have been suffering from adrenal fatigue since Xmas. My doctor would not okay testing my blood and in desperation I went to a endocrinologist this week and she tested me. My cortisol level was 3. " this never happens" was my original doctor's reply, I am in fear of going blind but was told to up to 15 and see what happens . ( easy for them to say) I should add...I am already blind in one eye.
Has anyone else had this happen? Two things the new doctor told me was ...if I got sick to double my dose and if I was throwing up to go to a hospital and get it infused. Also to get a bracelet showing I needed prednisone. In five years I have never been told either.
I have not been sick and on antibiotics in the five years but I recently got bronchitis and was put on one....that may have pushed me over the edge as I was already probably on the low end of the absorption scale.
Advice needed.
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30048
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Good morning 3008 I just wanted to let you know that your post has arrived this time and that I am sure you will get some help when the rest of Europe wakes up. I am in Devon but don't feel able to offer you any advice only sympathy for what you are going through. As if this illness isn't bad enough it is compounded by the doctors ignorance and the capricious nature of the complaint. You just never are sure where the problem lies as there are no definitive clues. This is a wonderful site and I for one would not have had the progress in my own illness without their ever knowledgeable patient and kind help.
I am sorry and not surprised that you are not feeling in safe hands. Your doctor was reprehensible to refuse your blood tests originally. Your Cortsol level is so low you must feel like death at the moment. Presumably you are being treated for Adrenal deficiency at present rather than a return of GCA. Are you experiencing PMA or GCA symptoms currently?
Presumably if you vomit the doctor worries that you will lose your steroid dose, and it is vital that you have a daily dose, hence the infusion advice?
The bracelet used to be routinely advised, not so much now, but it is key that medics know you are on steroids if you become incapacitated ( same for us all) I have alerted my other half. I would search about the Internet to see if you can still get one.
Also, any sign of headache/ tender temples eye symptoms, call an ambulance or get yourself to a hospital emergency room, I'd also be tempted to double my steroids during a perceived crisis but perhaps get proper medical advice on that.
Good luck and bless you in all you have to contend with. It's a good job you are on the ball and vital as well.
There is something odd here. I am also using an iPad and my reply shot off into the ether.
I was commiserating with you over your original neglectful doctor and how awful you must feel right now with your Adrenal deficiency and urging you to get to an emergency room at the first sign of GCA symptoms.
I was also wondering about the vomiting fear and imagining that the infusion was to ensure you got your dose.
The bracelet doesn't seem to be routinely advised. I've told my partner to tell medics if I become incapacitated. You could search the Internet for something to wear to let people know. Please take care and stick with this forum, an awful lot seems to be in your own hands. Bless you.
I'm a bit confused by your bracelet reference SJ - the STEROID CARD used to be routine but is getting harder to find. Many UK chemists do still have them and the Northeast of England PMRGCA charity has designed their own with additional features, look under Support us/Our little shop
MedicAlert Bracelets, on the other hand, are available all over the internet in some form or other. Some just a bracelet/pendant and some with a 24 hour phone contact where your medical background/information is available to healthcare professionals.
I'm sure I'm not the first to have done this, but I took a photo of my steroid card and set it as the screen for my phone. Just as well, as I had my bag stolen a couple of weeks ago and lost the actual card. Thanks PMRpro for reminding me I can get one at the chemist's.
Sorry to hear your story, can fully appreciate your concerns, I have sight in one eye only also.
Think your fatigue is probably due to the fact you are around the level your adrenal glands should kick in(if you are not getting the benefit of 12mg) so that is not unusual, nor of great concern, but it is something you could do without for sure! I was like that for best part of a year, but they did eventually start working again.
Why do you think your sight is at risk now? Are you having any other symptoms other than fatigue.
It is a good idea to have a medical bracelet. Easily obtained from internet.
Hi 30048, Universal Medical at identifyyourself.com should be able to help. My bracelet lists my conditions and gives a secure access telephone number and a special password will allow paramedics etc to get to your medications.
I agree, best option. What I like is you pay one fee when you buy the bracelet, and no more charges. There's another similar service which charges a monthly fee. This one works best when the medical conditions are chronic, or even lifelong.
Not really clear what sort of advice you are looking for. You do now have an endocrinologist who seems to have her head screwed on!
"" this never happens" was my original doctor's reply" - time to find one who knows his medicine I think. His ignorance is scary! There are a few people on this forum alone who are unable to get below a given dose and it isn't the PMR/GCA doing it, it is their adrenal function. I also know of people who often require paramedics to inject steroid because they have a wobbly. Secondary adrenal insufficiency is a well-known side effect of long term steroid use and it has been suggested it MAY be implicated in PMR. So sorry Mr Doctor - it DOES happen.
That DOES seem to be what the endocrinologist is saying - I've already suggested in the recent past that theoretically it could happen from about 10mg steroid dose.
The bioavailability of steroids varies between 50% and 90% - the amount of your dose you are absorbing. So at 12mg, the 50% person is actually only absorbing half, so 6mg. In the case of prednisone, it then has to be processed by the liver to produce prednisolone, the active form. If your liver isn't doing it too well, that could reduce the amount available even further. The physiological dose is approximately equivalent to 7,5mg of steroid - but that is almost certainly based on 90% absorption (or they didn't even think of that is even more likely!!!). However - 6mg is enough less to have some effect and if your adrenal glands aren't working at all you have absolutely no reserve in stress situations.
The same argument applies the other way round if your adrenal glands are working OK - for some people, the 50% people, by the time they have got to a 12mg dose they will need a bit of a top-up and that happens.
Interesting PMPrpro and enlightening for me. I had serious bouts of fatigue in the early stages of dropping from 11.5 to 11 on DSNS. Things eventually leveled off and I decided to stay at 11 for a month while back in the cold Arctic winter. I'm now starting a slow drop to 10.5 and I may better understand any fatigue that may result.
Thank you for all your replies. I appreciate everyone's take on my problem. I have ordered the bracelet but am still at a loss as to what level of prednisone I should go to ....I do not trust my original doctor any more and the new one , although good ...is treating the adrenal deficiency and not the GCA . I do have mild symptoms...slight headache, some jaw discomfort but not anything huge. Emotionally I am a mess....compounded by the fact that yesterday the pet parakeet I was taking care of died in my care. He was the sole " friend " of my autistic ( although high functioning) grandson who was on spring break with his family. Hit me as a metaphor I guess. Again thanks for your support.
I did ask what sort of advice you wanted, to me you seemed to be stating a situation.
As far as the dose is concerned I would suggest yo go up a bit at time and find the dose at which you feel well and have no GCA-type symptoms. The GCA comes first - you need what you need there. Hopefully that is also enough to cover your adrenal insufficiency needs, if not, you will need a bit more. But you can't say a specific dose, you will have to experiment a bit to find out what you need.
You say emotionally you are a mess - that is being compounded by the lack of steroid due to poor adrenal function and your emotional roller coaster over the parakeet and your grandson's loss. You need more pred for that I suspect. If you need even more for the GCA - then you need more. But only you can work it out in the absence of sensible rheumatology management - not that they can say a figure either.
One more question. In looking up secondary adrenal insufficiency, they made reference to heart not pumping enough blood. In my visit to the doctor about my bronchitis and to the endrogonologist about ten days later...they both heard an abnormal heart rhythm . Both did EKG's and they were normal. I am on heavy blood pressure medication and wondered if I should taper that a little. As you can see....I do not have good doctors in my opinion and that is why I am checking with you first. I should add I have diastolic disfunction 60%. That med is a beta blocker but I am also on Valsartan and Lasix . Life does get complicated.
Sorry - really don't know I'm afraid. Single ECGs don't really show a lot - a Holter 24 hour one is far more use. Is your medication managed by your PCP? Or do you have a cardiologist?
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