Memory loss/ cyclosporine?
 

Hi everyone
I haven't posted since last year when my husband, Jim, went thru his 2nd round of ATG (horse this time). This time the doc has kept him on cyclosporine so he seems to be having more success than the previous time without. The cyclosporine dose was lowered once, hemoglobin dropped, cyclosporine increased now better.

My concern is that he really seems to have had a significant decline mentally.
Maybe it's just age related (only 58), or maybe due to high ferritin numbers,
or perhaps it could be a side effect of the cyclosporine?? He has no recall of something we discussed the day before. I wanted him to try some memory
boosters like gingko maybe but he's concerned that any supplement he may take would interfere with the immune suppressing qualities of the cyclosporine.

Of course we'll check with his doctor before trying anything at all but I was curious as to whether this was a symptom others have encountered.

Thanks for indulging my codependence.
SherryM
wife to Jim, MDS treated with ATG twice at Moffitt- Dr. List

Hi Sherry,

Cyclosporin can be hard on the tinniest blood vessels of the body but the symptoms of such damage usually involve mare than just memory loss.

Other symptoms to link this to the cyclosporin are tea or rust coloured urine, the need more more blood transfusions, increased fatigue, blurry vision and headaches.

Does your husband have any of these other symptoms?

Sherry

I definitely have less recall and am on cyclosporine (300 mg/day). My memory does seem to be better as I go down on cyclosporine dose or as I am further away from ATG treatment.

re:cyclosporine/memory loss?
 

Thank you both for your input. Nicole I will ask him about the other symptoms you mentioned. I know fatigue is definitely a factor when he's on a higher dose. Thanks Scott...helps to know others have experienced this too and that it is improving.
SherryM

Hi again Nicole,
my husband said he does have problems with blurry vision now when trying to read things up close...seems to come and go. But no tea/rusty color urine or headaches.Could the memory loss and blurry vision be indicative of something problematic?
Thanks so much
SherryM

Hi Sherry,

Well the memory issues and blurry vision could be caused by a number of things, including aging, as you know.

I think it would be worthwhile mentioning these two symptoms to your husband's hematologist and mentioning that you had read that they could be signs of cyclosporin toxicity and tell him or her that you're concerned.

I'm sure the doc keeps the cyclo dose at a therapeutic blood level, however, every one is different. My son had a terrible reaction to tacrolimus (in same family as cyclo) and his blood level was never too high. It just reacted very badly to his blood vessels causing microangiopathy, which was what I was referring to re: memory/vision isssues.

A quick way to know your husband is tolerating the cyclo alright is to ask if there are any schistocytes aka bitten red cells in his blood smear.

The more you know...

memory loss and cyclosporin
 

Hi, I have memory loss with desferioxamine pump, the one given to chelate the iron, this gives you wee the colour of irn bru (orange) and can cause something called P.E.R.S. This is to do with water on the brain and you are supposed to watch out for seizures and blurred vision and headaches at the back of your head. I am in UK and I have to get my vision tested every four months because of this. Is your husband on an iron chelator cos this rather than ciclo could be the culprit. How often does he get blood transfusions, cos that can also be a factor. You should mention coloured urine etc to your doctor cos these things seem transient but can reflect a condition which could be moving to a serious stage. Incidentally if anyone tells you what they can do about it other than take your off the iron chelator please post cos they don't seem to have a clue over here in UK. I can be talking to someone and forget the conversation as I am saying it and I am 59, have blamed menopause and everything else but it seems to be the chelator.
_____________________________________
Diagnosed SAA Sept 2010, trisomy 15, small pnh clone. Txs every 4-6 weeks, on ciclosporin, ATG failed November 2010. No repeat as although very tired have otherwise stayed well.

I know a few people who like this website for "exercising" their brain, at least it is drug-free: http://www.lumosity.com/

I think you may have to pay though.

Good luck,
Deb