Any experiences on the following - much appreciated in advance.
Reducing hydrocortisone a fraction further as requested by Rheumy from 15mg (equivalent to 3 mg Pred) down to 12.50mg Hydrocort which = 2.5 Pred. This is my third attempt.
Less than 2 days into taper breathlessness appeared again (a feature on my PMR journey of 18 months +) but this time upon waking around 7am & with CPAP machine still doing its job. Never experienced this before other than note when trying to take small step in reducing to 12.50mg on other 2 previous occasions.
I have been extremely pale for some weeks & just absolutely far from well but not directly able to pin point per se.
The odd sensation now again of feeling slightly nauseous which ginger settles, slightly dizzy & slightly light sensitive - have had past migraine history, some hemiplegia, now settled since post menopause .
Sought advice GP Wednesday (not a lot of confidence in GP) who noted my pulse was in bi-gemmi with a rate of 44 bpm. When she listened to my chest heart reverted to normal sinus rhythm. GP then took b/p with cuff 180/70 - what a contrast.
When I asked if this could be part of my steroid withdrawal GP could not offer an me answer - said had not seen this before - (GP only has 1 other patient with PMR).
I collected my referral letter to my Cardiologist & note comment that GP wondered if I was experiencing bradycardias & could this be cause for sx p - what ever last 3 letters signify.
Yesterday felt worse with head throb on either side, highly light sensitive & sensed b/p high again - I rang Rheumy late afternoon who wants me to step back up to 15mg & ring Monday. I believe this could add up to being stroke material + over & above what else is going on? I am absolutely washed out today & feel stable so rest is factoring into my day
Importantly to mention I had two basel cell carcinomas diagnosed this week which helped stress me despite my best efforts to go quietly - my body has gone past the point of coping with even the minutest of stress. How on earth can I overcome this please??
Have cancelled surgery for BCC removal next Monday - Cardiologist appointment on same day which is my priority.
As always any thoughts gratefully received.
My kindest regards & special thoughts of you all as always
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Megams
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It sounds to me as though your priorities are absolutely correct ie as you are doing 1) Rest, only do what you have to keep yourself mobile. 2) cardiologist first port of call 3) get rid of the basal cell carcinomas ASAP- you don't say where they are, ask cardiologist to speed up cancelled appointment, and keep good look out for others appearing. 4) I wouldn't muck about with the steroids just now. Your symptoms could well be due to them but they usually put BP up not down. If you are more comfortable with 15 mg then that should be ok for a bit but cardiologist will give better advice next Monday so ask them about steroids & BCC I don't know how the BCC will be affected by steroids.
As far as I remember (I'm no expert) BCCs can be removed fairly easily so you should feel mentally much stronger once they are away - you have enough other worries! It think they only become dangerous if neglected.
Many GPs haven't a clue about reducing steroids so follow your instincts but let them know & keep your steroid card updated.
I have known several people who have had BCCs chopped out with no problems & very little discomfort. I also knew a friend who on starting steroids for PMR in his eighties once he had found the right dose lived merrily on until he was 103! His main complaint being he could no longer play golf because of weakness & pain when he did so! If he tried to reduce his steroids he ended up in hospital & it took ages to settle again but ok once he did.
Good luck with cardiologist on Monday! Make Sure you poor out all your woes to them because once you heart stops jiggling about you will feel much better about the other things which although serious are not life threatening. We all find PMR a pain so sorry - join the club! We just have to slow down & change our priorities in life!
Don't neglect your friends! Drop the ones who have no patience & understanding. I notice you wear a cross so keep up with all your church non physical activities you will probably find other PMR sufferers there & we are all different so no competition to keep up with others!
I have recently had what is almost certainly a flare of PMR/GCA - and the worst bit is breathlessness in the morning as soon as I try to do anything. I'm back to 15mg which is enough to make me feel perfectly fine even in the morning - less and I can barely walk up the gentle slope onto the village. It all started before Christmas with my BP swinging about all over the place during the early part of the day. Both that and the breathlessness improve during the day until I'm fine in late afternoon. The lower the pred dose the longer it takes.
I (and I think the consultant at the hospital) think it is possibly GCA affecting the thoracic arteries and the difference through the day is as the pred reduces the inflammation in the artery walls. When they are narrowed that increases BP as the heart has to pump harder to push the blood through - and it falls again as the inflammation fades so, although the general effect of pred is to lead to higher BP, it doesn't always happen and the opposite may be the case.
I don't think a BP of 180/70 is really stroke material - though it might indicate something else - so don't panic yet.
My apologizes for this late response to your interesting information which of resonates with me as I patiently await for further answers & tests.
In the meantime I have had a mild heart attack (my breathlessness unceasing 21 April) subsequent angiogram of coronary arteries OK. Troponin levels climbed to 1000 + so injection in abdomen along with Asprin 100mg & Ticagrelor x 2 daily - hospital stay 3 days and back again last week for 3 days as breathlessness comes and goes with no known answer as to why.
Awaiting MRI and hoping to hear of my Echo results.
Remembering I had a ASD repair 28 years ago and told my atrium is severely dilated - wasn't pre PMR
Seeing Neurologist next week and a Respiratory Spec also. Had chest xray which show lungs fine as Rheumy wondered if beginning of institital lung disease?
Could this be new inflammation or is this the result of my continued steroid intake which is now 17.5mg Hydrocort which equals 3.5 Pred.
Any thoughts on the above gratefully received as always.
Impossible to say, except the risk of cardiovascular disease is increased in patients with RA and - I suspect - in other autoimmune disorders, particularly those that cause vasculitis.
I've also had episodes of breathlessness over the last few months but in response to exertion. No sign of anything cardiac other than too high a dose of betablockers that is preventing my heart rate rising in response to exercise. However it resolved at 15mg pred - so we have assumed it was a flare of the vasculitis and it now seems to be fading as I have been able to reduce to 12mg without problems this time.
Hobbyhorse out again - no sign of atrial fibrillation during the breathless episodes?
Please tell me if I am correct but gather from your comment "however it resolved at 15mg pred-so we have assumed it was a flare of the vasculitis. Is that vasculitis within the heart region?
While I remember I had to stop the betablockers (have had an asthma history + obstructive sleep apnea) which made my breathing even more distressing especially up into throat area.
Is the last sentence of your post a question to me? If so have quietly lived with AF for as long as I can remember but never bothered me, just took a deep breath if extra long AF - if that makes sense.
Thanks for your prompt response - see there is a website HealthUnlocked for cardiac issues too which will help me very much.
Thorax generally I'd suspect and more likely the pulmonary arteries. Whatever - better now thank goodness although I have also managed to reduce the betablocker dose.
Hope yours sorts itself out too - and no more small MIs!!!!
Pleased that your beta-blocker dose has been reduced, that is progress.
I am awaiting an MRI hopefully next week - I will update with a new post once I know more from this test, the last of many in the hope of seeing if others on this forum have had PMR and any causal link with cardiac issues arising from their PMR/steroid intake and to what degree?
Megams, I feel for you, especially as you have more than one thing on your plate at the moment, it seems. What does concern me is your mention of "head throb on either side, highly light sensitive & sensed b/p high again", also your "nausea", as these were among my very first symptoms leading up to GCA diagnosis, except my BP was even higher at 200 systolic. Importantly, you have had good advice to increase back up on the dose and hopefully, if this is GCA arriving on the scene, that will help. It isn't long to your cardiology appointment so hopefully you will get some answers then. Also by Monday when you contact the rheumy he should be able to advise you further depending on your response to the increased dose. Lots of good luck wishes.
Bless you Celtic & so sorry I have taken so long to respond - please read my other late replies which will bring u up to date.
Was let down by original Cardiologist of longstanding who rescheduled apptment to May - I couldn't wait that long & saw a new Cardiologist last week - didn't think he was very thorough either, starting to lose some confidence in some of our medical folk I'm afraid to say.
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