I'm developing a real aversion to the medical profession; pardon me, Dr. Dasgupta, not you.
When these breathing and fatigue issues started, I asked the cardiologist if it could be related to my GCA. He told me it had nothing to do with it. I wondered about the autoimmune aspect of it affecting the heart. It continues to be my experience here in the states most Doctor's are much less informed than in England about GCA.
Yesterday talking to the internist's nurse about an upcoming cardiac MRI. In the go-around about scheduling, the nurse told me part of my problem was PMR. When I said I didn't have a diagnosis of PMR but had GCA....she said, "The same thing and the doctor said so."
I'm getting more frustrated trying to find answers and feel better....is it time to just accept the way I feel as the way I will be? The docs are driving me nuts....but...maybe I'm driving them nuts too, looking for answers. 💖
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Grammy80
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There is a school of thought that sees these diseases as a continuum of the same thing. My diagnosis was PMR then GCA after 4 years and Large Vessel Vasculitis that can affect the Aorta. We learn so much on here that there is a tendency to balk at the ill informed remarks that we sometimes hear from the medical profession. We really do have to be our own advocates quite often. Drive them nuts. Hopefully the next generation of sufferers will have a better ride. The breathlessness is the worst symptom - I have even wondered about asthma and the possible connection to Actemra. Good luck with your MRI. Xxxxx
Jane, I did read where Actemra can cause shortness of breath. Sometimes I feel that maybe we, and many of the other members, have such a collection of 'chronic conditions' and PILLS in our backpack~~~that who know what causes what~! I wish I had PRO's background~! When does the cure start to get us~?🤔 💖
I thought so, but my rheumatologist says my breathlessness is nothing to do with gca and to keep reducing the prednisolone . For the second time as I get to 5 or 6 mg I get more and more breathlessness and heart arrhythmia. The GP has referred me for a 24 hour heart monitor, will this tell anyone anything?? Frustration with the medical profession doesn't begin to describe how I feel!!!!
"a 24 hour heart monitor, will this tell anyone anything"
It might if you have an episode of arrythmia while wearing it. If it doesn't it may not although it can show other things as well.
However, the fact that it gets worse as you reduce the pred could mean it is associated with the vasculitis (as my a/fib is) or it could be poor adrenal function causing an arrythmia given the dose at which you find the problems recur. Arrythmias also cause breathlessness as well as other symptoms. The NHS website links to this
Have you any idea yet how long it will be until the monitor can be tried? Some of the commercially available monitors will tell you about an arrythmia I think - but has to be a top-end one. Some hospitals are said to be using them as a screener to see if a particular patient needs a proper monitor sooner rather than later.
PS, forgot to ask - does it happen every day and last at least a few minutes each time? If it doesn't try to get the GP to order a multi-day continous external loop monitor. I had a multi-day because I know it didn't happen every day but my problem was transient and then gone - the external loop monitor stores the previous 4 or 5 minutes of trace so when you push the button after the event the result is sent to the lab like an email, you haven't missed it.
Thank you, it is now happening most days but often very fleetingly, although last night it went on for 5 minutes or more. I think it is worse when I overdo things and get tired. At the moment I'm booked for the end of the month with a follow-up at the end of July, however all my other appointments have been postponed, often at the last minute. If it doesn't show anything I'll ask the GP for a multi day.
Morning Grammy, not going to try and answer the medical question, but I'm quite others will be along to so do. But good luck with the MRI and if your keeping asking the questions and querying the answers you get enables a few more members of the medical profession to become more acquainted and knowledgeable about our "delightful" condition/s then you are doing a fab job. I do hope that you get the answers you need soon. All the best.
Hello....Morning? In jolly England, it is...it is 11 pm here. I have London time quickly available on my phone. Thanks for the nudge...I will keep after them. I'm no member of Mensa, but some of the things they say or don't say!!!💖
Hi Grammy, I was never officially told I had PMR only GCA. The pain and stiffness was obviously that - just saw it on my review letter one time. Breathlessness was part of my fatigue and still is to some extent. They think we’re mind readers - or shouldn’t know!
When I had PMR, but pre diagnosis, I had some breathing issues ( sudden sharp intakes of breath) & twice had rather spectacular black out incidents, the latter of which was diagnosed as benign ectopic beats. Post diagnosis & the wonderful pred, these symptoms have not reoccurred. My GP wondered if they were caused by the PMR/GCA
Hi Grammy, let us know how your MRI goes and good luck and best wishes to you. Like I've said, always here for a natter on email, or private messenger on here when you feel like it. Don't be alone XX
If patients stopped asking questions there may be no need for doctors to question themselves or to look for answers and there would be no advancement. Of course, some will do neither but there will be others who take up concerns and anomalies which lead to research. I'm not sure if this is really the way it all works but at the end of the day it's your body, your health and your life so go ahead-drive them nuts!x
It does tend to fluster the less good ones ... Looking for answers I mean
It's partly due to the system whereby straight A students are often successful in getting into medical school. They may be clever, but that doesn't mean they are enquiring, what a Lupus friend who is a very complex patient calls a True Detective. Nor does it mean they will make a good doctor or even a good researcher within the framework of clinical duties.
Of course it has something to do with it - it is an autoimmune condition and fatigue is an integral part of almost all a/i disorders. In PMR the blood supply to the muscles is compromised and pred can also cause breathlessness as an adverse effect.
I used to work with a Psychiatrist who was a Physician ‘By Trade’ she went into Psychiatry when her children were little, she NEVER Assumed anything & often sent Patients for other tests before putting them on the Heavy Duty Meds often needed but she was always sure of their diagnosis, l wish there were more Doctors like her....
Hi Grammy80 , I have giant cell arteritis and polymyalgia rheumatica . They aren’t the same. Gca is a blockage in your arteries theygave me a biopsy for it, nuts really cos it can be anywhere in an artery, they sliced a lump out of my temple , and pmr is poly , meaning lots of , myalgia meaning pain . I understand your pain , I have it . Hugs and best wishes 💞
I have been off Pred. for a few weeks now after 5yrs. I inject Tocilizumab and take 20mgs Hydrocortisone daily (recently increased from 15mgs. after stopping the Pred.) I too have breathlessness. I have stiffness in muscles, palpitations, (just when tapering the Pred). My adrenal glands have increased their work from approx. 230 to 350 and was told they really need to be above 400, (I don't know what these figures mean, other than , the bigger figure, the better). I have GCA of course, but with things as they are, there is no evidence of pmr. I t's so complicated!
The numbers are the basal level of cortisol in the blood - samples taken at 9am usually. Your body requires a certain amount to function normally - while you take pred it does the job and the adrenal glands take a holiday and can be a bit reluctant to pack away the swimsuit ...
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A couple of GCA questions
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Jaw and teeth could it be GCA
