I was told today that older people with vasc... - Vasculitis UK

Vasculitis UK

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I was told today that older people with vasculitis are not given medication. Could that be why the doctors haven't helped me yet?

cruznlcsw profile image
14 Replies

I was told they don't know what to do by my internist.

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cruznlcsw
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14 Replies
PMRpro profile image
PMRpro

I imagine it depends which vasculitis is involved. Giant cell arteritis is a vasculitis and is generally only found in people over 50 and the incidence increases with age, the average age is in the 70s. They are treated when it is diagnosed since there is a high risk of going blind with it.

One of the problems with other vasculitides is some treatments may be difficult to use in older patients with other medical problems. Almost all of them suppress the immune system and some are the same chemotherapy used in cancer - they are heavy duty drugs with severe side effects. A major point of consideration is often whether the patient is able to cope with them, how ill they may make them.

cruznlcsw profile image
cruznlcsw in reply to PMRpro

Oh, I see. Kind of a bummer. I am getting worse day by day unfortunately. Sleeping more and more, and I can't seem to do very much anymore without complete exhaustion for two days. I wish they would just be straight with me, because I have a disabled daughter that I will have to make sure that someone is there for her.

PMRpro profile image
PMRpro in reply to cruznlcsw

Will they, or at least your internist, listen if you tell THEM how it is? Explain the situation and why you want to know. Of course - it may be they are already aware of that - and don't know the best way to proceed without making you worse before you are better. But can you try to make sure they do appreciate it isn't just for you but also for her?

cruznlcsw profile image
cruznlcsw in reply to PMRpro

I have sent two letters and have not heard back from either doctor. I explained why I need to know what type of of vasculitis I have and it isn't just about me, but also my daughter, and who will be there for her.

BronteM profile image
BronteM

My understanding is that steroids are very cheap drugs, as well as being effective for a wide range of conditions...one of the reasons that the NHS here in the UK hands them out so happily. Methotrexate is not expensive either, and that is the drug most frequently used to follow on the prednisone. After that, the treatments are increasingly expensive and the cost does become more significant. But if you are not treated the possible consequences are a lot more expensive than the drugs. Not just for you, but also for your insurer, or the NHS. I know there are few health providers that follow that logic properly, but I think you should be able to discuss the costs with your specialist? Armed with a list of prices off google if necessary!

cruznlcsw profile image
cruznlcsw in reply to BronteM

I live in California, and I don't think it has to do with cost, because I would have to come up with the money. Thanks for your feedback though!

Nadine99 profile image
Nadine99

How do you define 'older' people?

cruznlcsw profile image
cruznlcsw in reply to Nadine99

Over 65.

CanaryDiamond10 profile image
CanaryDiamond10

Dear Cruznlcsw: You could get hit by a car tomorrow. You should have a permanent "distress guardian" appointed immediately so that your disabled daughter has protection if something untoward should unexpectedly happen to you. I don't know what her disability is but it sounds like your worry is that she would need help with decisions in the future. My advice is not to have it be anyone in the family but to have a court appointed guardian in case something should happen to you. Make a point of ALWAYS having your papers up to date, signed and ready for immediate implementation. That means your Last Will and Testament, Living Will, HER Living Will. Enough Life Insurance for funeral expenses.

Everybody, diseased or not, should have their "papers" in order at all times. The mess they leave their heirs if they neglect to do so can get very complicated to say nothing of emotional explosions among the family.

Just a word to the wise, but a very important word. Won't it soothe your worries as well?

Warm wishes,

Canary

cruznlcsw profile image
cruznlcsw in reply to CanaryDiamond10

Yes it would indeed! You are so right. My attorney is going to help with this, but I also need to prepare her for loss. We are very close.

mags1701 profile image
mags1701

I am 79 and got WG 5years ago. I was treated with the usual heavy drugs and steroids for 2-3 years. I am drug-free now. If I had not had the treatment, I would have died because I went into kidney failure. I was not very 'with-it' for a while and was lucky to have support. This was all on the NHS. But your age should not be a factor in whether you get the treatment or not. Iam sorry you both have so many problems and I do hope you get the proper treatment soon.

cruznlcsw profile image
cruznlcsw in reply to mags1701

Thanks so much for your input!

cedric profile image
cedric

well I am 65 and I get treatment in fact my dr is very good

Jim-Bornac profile image
Jim-Bornac

This is not true.