Questions and comments advice needed

[Dangerousdoug2]

Hello

My Brother (older) has Hughes and APS.

He is approximately 52

It has caused strokes, seizures, Black holes in his field of vision,

Joint Pain and dizzy-ness and loss of balance. He has also had

total adrenal failure.

He often has angry outbreaks as if he is a mad man and eggs

fights. His headaches sometimes last for days, and he has the

brain fog you guys talk about here.

My question is are the rages a result of the steroids?

Can the strokes have damaged his brains emotional processing

center?

Could he just be frustrated as hell and be lashing out?

I have been working with him on this for over 8 years and he has

systemically run off his wife, his friends and now he is working

on the last nerves of our family. He is quite stubborn and refuses

any counseling.

Does anyone have any suggestions on how they are dealing with

the emotional fallout of this combination of diseases.

Have your found any meds that help level you out emotionally.

He is also on some kind of anti depressants, Large doses of

Cumidin, steroids, and stat ens, the DR's are quite sympathetic,

however they seem to be treating the symptoms and not the

disease. They also say it is auto immune, but I assume that is

the Hughes Syndrome part, or is that something else.

I am not a DR, so please forgive me if I misspelled some of

these drug names.

Are there any drugs on the list that we should consider, or that

you have had luck with??

This is a very distressing disease and you all have fantastic

attitudes, considering the challenges you are dealing with.

I have had a Lupus Test but show no unusual levels, and am

currently not symptomatic,

Do these diseases tend to be genetic, or triggered by

environmental exposures.

Sorry to unload it all in such a long post, but I am frustrated and

don't know how to help my brother.

Thanks in advance to all,

Douglas

[MaryF Administrator]

Hi there, I can see from this that you have been your brother's main carer for some significant time. Firstly strokes can cause in some people a change of personality and not always permanently. Lynn another Admin on here recently loaded up an article on this, and I am sure I can find that for you, I will have a search and pop it under this post. Thyroid and adrenal issues often go with Hughes, and I would ask you if you have a decent consultant rheumatologist looking after him? You need good care with the right drugs and the right level of blood thinning to gain better results. Sometimes a re tune of the drugs plus a pain management clinic is the way to go. Also where are you located? I am glad you have found this site, and I am sure we will be able to offer you some support. There are others on here, using the site as they care for friends or relatives with the condition. All the best Mary F x

[MaryF Administrator]

As promised: bbc.co.uk/programmes/b01kpvwt

Mary F x

[Hidden]

Steroids are a nightmare! You don't say what dosage he is on but I found myself getting rather shouty on 20mg a month or so ago. My dad has cancer and is having R-CHOP chemo which is the most severe there is, so they dose him with 100mg steroids for five days afterwards - he becomes a total monster. Really unlike his normal personality and very very emotional and SHOUTY and ANGRY. We have to keep pointing this out to him - this is not his normal, gentle personality but I do sympathise because it's very difficult to rationalise. At least with my dad, he comes off them after five days of hell - it must be tough with your brother.

[pamcelis]

Hi i was so ill that during 4 days the drs had to give me 1000mg of steroids daily... And after 4000 mg i still took steroids for about 2.5 years. It really changes you. I had a lot of mood swings and i went from crying to yelling and almost throwing stuff. Its a pretty crazy situarion and im sure we all here get you or your brother at some degree.

Definetely its hard to have people leave you when youre having your most difficult moments. I hope your family shows up and shows some support! Youre an angel for being there for him, im sure that even though he doesnt shows it right now he ireally appreciates all you do for him!

[pluto5]

I have a son the same age as your brother. He was diagnosed APS positive on one occasion. Three years ago he had Meningitis, extreme fever, volently sick over 3 days,confused, neck and back pain, quite delirious. The follow up was Epilepsy, which is usual. He is on med now which controls his seizures. His characte has completely changed,from quiet to aggressive, memory inconsistent, he doesn't listen and butts in all the time.It is really difficult to keep ones cool, but know he cannot help it.

I am saying all this because it relates to what you are saying..

AS for me, multiple strokes and loads of TIA's, I found after my LAST mini stroke recently that I changed. I easily get angry with myself, occasionally have outbursts, my memory has deteriorated even more. My balance is worse and my head often feels swimmy.Sometimes I cannot see properly first thing. I am APS positive sometimes.

It seems to me that APS and stroke are related in some way, Well they are., but all the symptoms you are describing fit in with all these conditions. Strokes in particular leave us with so many deficiencies,many of which are unseen.

I fully empathise with you and your brother. Do let me know if you come up with any solutions.

Sorry I can't be of more help to you.