Advice please about Large Vessel Variant .. Vasculitis/GCA ?
Posted , 7 users are following.
I gather these are the same though I have never been told I have vasulitis. Needed 40mgs at the start etc. I have had slight (but within normal limits) reduction in renal function. no breathlessness or tiredness, mainly painful biceps, occ joint pains. I get palpitations, tachycardias, occ' arrythmias and a 'thumping' heart, often when resting too. Have had ecg/echo etc and they seem to think pred' side effects and a touch of inevitable anxiety. This has all reduced as I got below 20mgs. BP normally fine and good at the mo.
MY Q is about the possibility of aneurysms and strokes. Should I be asking for a scan to check...if so what ? would I need to wait till off steroids?
what other things should I be on the look out for. I am a little nervous about the thumping heart which I am left with now.
I understand that some people go on to get GCA later. I do get intermittemt rt sided tinitus which started about a year before Polly got me, this is slightly less these days, ? due to steroids...is this connected I wonder?
I did get a v bad headache lasting 2 days, 8 months before start of PMR & needing trip to minor illness unit, co-codamol as neurofen didn't work. Anyone else out there with a similar story? thanks...again
0 likes, 27 replies
Silver49 Guest
Posted
I recognise all the heart problems. I have just had an echocardiogram. I stopped the Calcichew and my problems ceased. Coincidence or was it going to improve at that time? I don't know. There is now concern about my bones but I have decided to take my chance though I have increased my calcium and leafy green intake. I would not suggest you stop yours but it may be worth discussing with your GP if you feel it appropriate.
Guest Silver49
Posted
oops...but I've never had calcium tabs! my blood tests show good levels but am planning on checking that again with gp soon. I would follow advice re taking them though as you don't want crumbly spine etc in the future. Dexascan maybe a plan to check? thanks
Silver49 Guest
Posted
EileenH Guest
Posted
Your blood tests should be good - because the body keeps calcium in tight limits because that is essential for your muscles, including the heart, to work properly, calcium levels that are too low or too high can make you very ill and even kill you if it isn't recognised.
But the body does that by taking calcium from bones if your blood level gets too low - and that is what causes changes in bone density. The idea of taking calcium tablets when you are on pred is so there is plenty floating around in the body available for use - because pred makes you lose more calcium than normal through the kidneys.
So when put on pred you should be sent for a dexascan and a decisionmade about whether calcium/vit D is enough. It was for me, I took 4 AA tablets and never again. And my bone density has been fine, down a little bit over 7 years of pred is OK.
Guest EileenH
Posted
ohh...so it sounds like I need calcium tabs/dexascan. have appt in 2/52 so will ask. interestingly I have noticed v chalky wee on occ' which no one seems to aknowledge (definately not a wee inf'
I'm pretty sure it's cacium related. as usual your explanations keep me on track...thanks !
Anhaga Guest
Posted
Doctors are all keen to recommend calcium although the only rheumatologist I've encountered said she didn't believe in calcium supplements. Go figure. But she did emphasize the need for Vitamin D3. I would also add that you need Vitamin K2, as a supplement if it isn't in your diet through grass fed animals - meat, dairy, eggs - never grain fed. This vitamin will help avoid problems caused by too much calcium as it makes sure the calcium goes into your bones, not deposited where it's not wanted. A calcium supplement without a corresponding increase in magnesium intake can cause an imbalance between those two important elements, so make sure you get that as well, even by having the occasional soak in a tub with Epsom salts. Most other micronutrients should be in your well-balanced diet, but don't overdo animal protein as too much phosphorus can leach calcium from bones.
Guest Anhaga
Posted
A bit late spotting this but thanks, yet again. I will check this out tomorrow.
This forum has really helped me to understand & stay on track,