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
EileenH Guest
Posted
No - not quite the same. GCA is biopsy-proven large vessel vasculitis which shows large multinucleated cells in histological sections whereas LVV may be diagnosed using other techniques such as PET/CT or PET/MRI which show there is inflammation and that inflammation may NOT have giant cells but without a biopsy you cannot know. GCA is a LVV, not all LVVs are GCA. Does that make sense?
Re your heart "thing" - have you had a Holter 24 hour ECG that included an episode of the palpitations? A plain ECG/echo wouldn't necessarily show the cause - which in my case turned out to be atrial fibrillation, probably caused by the autoimmune part of the PMR. Though if it improves with lower pred, maybe they are right. Mine was really a retrospecitive diagnosis: I had a massive drug reaction which triggered the a/f. I was in hospital at the time. Once it was sorted out I realised that the episodes I had had since PMR started had pretty much gone - they had been a/f.
There is an increased risk of aneurysm if you have LVV of the aorta and the guidelines say we should have a biennial chest x-ray - really not sure how accurate that is. Otherwise I htink it requires a fairly specific form of U/S but i'm not sure (I do know someone who does theough!). You can request to be added to the AAA screening programme in the UK which is primarily aimed at men over 65 but that would cover the abdominal aspect of an aortic aneurysm which is also a possibility. I know hardly anyone with GCA who gets sent for screening though -which is appalling but the reality. Very much seems to depend on the rheumy. Or possibly your GP if you know about it.
I, too, had tinnitus - my dx is PMR but I and some of the doctors I have seen suspect it is really LVV judging by some of the symptoms I had: tinnitus, thigh claudication, cough and sore throat, scalp pain, jaw claudication. The last wo only lasted a short time, the scalp pain was about 3 or 4 weeks maximum and then stopped so I never thought any more about it. The jaw claudication lasted longer but wasn't really pain, more a sort of tiredness when eating hard food (carrots or German rye bread crust, if that means anything to you!)
If co-codamol helped the headache I really doubt it was GCA - but who knows.
There is a survey being carried out about PMR/GCA and ear symptoms - tinnitus, balance and so on. Please consider joining in:
https://patient.info/forums/discuss/research-project--535782
Have I answered everything?
karenjaninaz EileenH
Posted
I've had tinnitus for over 40 years. Thorough ENT check found nothing of note. I think my tinnitus gets more noticible after my morning pred dose- go figure.
Guest EileenH
Posted
Hello Eileen..as always grt info...thanks. yes that does make sense and it helps to understand it. I am sure I was in AF for an hour or two one night but typically it stopped when we arrived at A&E. have had 24 hr tape which only showed ectopics etc I've always been one to flip into a fast HR for nothing much at all so maybe I'm more prone. I know you can get private aneurysm checks done so I might go that route if I can't get one on the NHS but really helpful to know about that too
interesting about the tinitus (Ive signed up to survey already!) but so far have been lucky re headaches etc. Have never had this exhaustion that so many suffer!
Badluck with that drug reaction...that must have been a blow
Thigh claudication...leg pain on walking, swollen ankles?
On a good note, my blood tests have come back showing ESR trend is static at 2 and CRP now 6 from 7 so I guess I should stay at 12mgs for a month and then follow your dead slow plan. Glad I held back as nearly put myself back up to 15mgs
So helpful to talk to you all...KBO !
EileenH Guest
Posted
Don't waste time getting yourself to A&E, call 999 and tell them it is a cardiac problem. A first responder paramedic in a car at least should be sent, together with their 3- (possibly 12-) lead ECG machine clutched in their sweaty little paw ! Instant ECG AND they will have seen how you were as evidence for A&E (because they will almost certainly transport you). It only really matters because if you have a/f you should be on an anticoagulant - and that reduces the risk of stroke considerably. So all good.
Actually I am very grateful for that drug reaction - it found the a/f I didn't know I had AND it achieved a confirmation from someone who counts that a lot of the back pain I get is due to myofascial pain syndrome, which she proceeded to sort out. And this lovely pain specialist is available privately should I need a bit more help in future than I can get out of my GP - who is lovely but not quite as bright as the other one!
Thigh claudication: about 1 minute on the cross-trainer at the gym caused the most awful cramping pain in my quads! Which stopped when I stopped and came back if I started again. Due to inadequate blood flow/oxygen supply to the muscles. And a symptom of LVV. Not that anyone was interested!
Guest EileenH
Posted
you've certainly been through the mill. hopefully you've nearly kicked into the long grass
Elijo karenjaninaz
Posted
It's a known fact that tinnitus is frequently a precurser to hearing problems. I used to have it many years ago, had super hearing. BUT, no longer!!!
karenjaninaz Elijo
Posted
Every hearing test came out normal but if I suspect hearing loss or if I get feedback that I am hearing impaired I will get hearing aids. I get annoyed at people why deny this and expect everyone else to shout.
Elijo karenjaninaz
Posted
Do I ever agree to that! I wear them most of the time and am always looking for something better. I couldn't really function without them. My sister started to wear one aid, has never had it adjusted, and is getting deafer all of the time. When I talk, she says sharply. "SPEAK UP!" I don't have a strong voice but most folks can hear me, & it really strains my throat to have to alwys speak louder. Bah!
EileenH Elijo
Posted
One aid is useless apparently - not a good way to save money!
My husband was getting worse and worse and wouldn't wear his very old NHS freebies. So I dragged him into a local hearing aid shop (not supplied on the healthcare ticket here in Italy) and they did a hearing test. He was horrified when he saw how much hearing he had lost - he had cancer 22 years ago, the chemo made him deaf and he knew a lot of the top end of the spectrum had gone but in the meantime the whole range was down. He's a physicist so he knew what the graphs were showing. We could have bought a small car for the cost of his at the time top of the range aids but the difference they have made is fantastic - he joins in conversations now, even in a restaurant with everyone talking around him!
But like you Elijo - I was SO fed up with shouting having said something at least 3 times. My almost permanent sore throat improved immediately!
Elijo EileenH
Posted
They are very expensive, 4 - 6,000 & more, not perfect, but they help. I still can't hear well in restaurants. Am looking next week for a trial on Roger pen, supplement to my current aids. Another fairly large expense. Has anyone on this forum tried one? (I'll have a month's free trial)
EileenH Elijo
Posted
His were even more than that - no subsidy available as he isn't "disabled" enough! Our restaurants do have either wooden ceilings and curtains or sound absorbing boards if they are sort of slick and modern. That makes a tremendous difference.
Anhaga Elijo
Posted
I watched a program a few years ago which did an expose of the hearing aid industry. At that time the materials used in the average pair cost something like $2.00 and the aids could be manufactured for about $50.00.
EileenH Anhaga
Posted
No different from smartphones then? This pair are tiny and relatively comfortable. Being digital they can be programmed for different wavelengths - and that is something the simple ones don't do. They keep a record of use and what sort of environment they were used in - which helps decision-making for the technician. It's the same as drugs and phones - you aren't just paying for the ingredients, you are paying for the development.
You have to pay or do without - and in this house they have been worth every cent!
Anhaga EileenH
Posted
I think I've found the item, will send you the link. I did misremember the prices, but the markup is still stupendous.
EileenH Anhaga
Posted
I'm not surprised - but equally, we're stuck aren't we? He wears these - he wouldn't wear larger or less all-singing all-dancing ones because they'd be a trouble. We paid for convenience - and I know they were overpriced...
Anhaga EileenH
Posted
It's quite unethical isn't it, the way corporations and people in charge take advantage of those of us who really need the services. If (probably when) I get hearing aids I'll look for the best and the cost be hanged. And I already do the same with my eyeglasses. A young friend of mine gets her glasses, everything the same except she has single vision not graduated lenses, and pays about $35.00 at cost as she has a relative who is an optometrist. So a healthy profit would be double that price? I pay over $1000.
EileenH Anhaga
Posted
Very much depends on the frames and the fanciness of the lenses. I would have very thick ones as I have a high dioptre prescription. Single vision (because I could never be bothered with getting the hang of varios) cost peanuts and if I get the cheapest frames with small lenses I'd pay very little. But I'm picky and like larger frames so need the lightest lenses to avoid a big pressure spot on my nose - and they promptly cost a lot more. But NOT $1000! And I do expect them to last a lONG time! My current computer specs must be 15 years old...
Anhaga EileenH
Posted
My friend and I have very similar vison problems, very near sighted with astigmatism, except I also have the age related thing of needing varifocals which I accept would up the price somewhat. We tried on each other's glasses to check! Like me she gets top of the line frames which are a pretty penny for me but apparently not for her. She even gets special glasses in new styles for important events. Wedding glasses! I really like my varifocal glasses, nice being able to see everything clearly. I didn't even need time to adjust to them when they were new, I took to them like a duck to water. Except I still take them off for the finest work like threading a needle. This year I hope to get new prescription sunglasses as the finish is wearing off my old ones. I usually get four years out of a pair of glasses, but my prescription does tend to change otherwise I might get more.
EileenH Anhaga
Posted
I got new lenses for my sunglasses in May last year - a month of two ago the coloured caoting suddenly looked like a crumpled sheet! The optician was a bit iffy initially when I went in, telling me it would happen if they got too hot (er, I wear them in the summer in the sun don't you know!) or if I cleaned them wrongly. Then I pointed out they had sold them to me - and she was nice as pie and took them to be replaced. That was a good 10 days ago, still waiting...
I'm very short-sighted - which is why I don't bother with variofocals, I just take them off!
Anhaga EileenH
Posted
They were obviously defective, good thing your optician is getting them replaced. I don't know how old mine are but they must be at least ten years and I think it's probably more like fourteen. As I don't need the reading function when I wear them they last longer than my regular lenses. Only the second pair of prescription sunglasses I've ever owned. Have to say I have experienced that blurry vision people talk about when on pred, don't know if corrective lenses work for that.