Is there memory loss caused by steroi... - ITP Support Assoc...
Is there memory loss caused by steroids ?
Yes. I got severe memory loss when I was on a high dose. I stopped taking steroids over two years ago and still suffer from it.
Oh yes I called it pred head. Its been nearly 6 years since my last dose and used to be on 150mg a day for nearly 2 years for my itp and my head was a mess. I flat out refuse to ever take it again and wont allow my son who also has itp to take it either
How did you ever cope on that amount of steroids? Did you put on a lot of weight? Steroids are horrible things and I hate them. They did nothing for my count but just made me into a drugged up zombie - horrible!
I also had terrible memory loss while on Prednisone and have never really recovered. It shows up most noticeably when I am trying to recall words; aphasia is a major liability for an editor. I have a difficult time finishing my sentences when I speak; I often come up with a word that is similar in meaning or that starts with the same letter as the one for which I'm reaching, but not THE word I need. I have little memory of the time I was on the steroids, but I know I was unpleasant on my best days and nearly insane on my worst.
I'm sorry others have suffered from steroids too, but this is the first time I've heard that I'm not the only one who hasn't been able to shake the side-effects.
Hi SoporRose I was told by my consultant that with the dose of steroids I was on I would have either hallucinations, suicidal tendencies or memory loss. I felt lucky to have had the memory loss but now - 2 years later - the problem is still there. I had to ask someone my password for my computer last week, which has not changed for three years. I don't write it down because of security but I think I may have to. When I was in rented accommodation I paid the rent each month by cheque (by choice) and all paperwork was in a folder. Each month I could not remember what the folder looked like, where I kept it or what I had to do to pay the rent. The worst case was when I filled my car with diesel and could not remember what to do next. I knew I could not just drive off, but had no recollection of the next step. I followed someone into the paying area and watched what they did. The lady behind the counter wondered why I was taking my time. It was because I had no memory of what to do next. She asked if I wanted to pay by cash or card, so that gave me a clue. I said card, and gave it to her because I did not know what to do with the card. She put it in the machine and luckily I had not forgotten my pin no. I paid and left. When things were that bad I would not drive anywhere more than a few miles and only to places I had been to many times before. I was seriously detrimental to my work. I run my own business that involved driving around the country and being on top form. Things are much better now but I still get the lapses from time to time. Steroids are to be left alone wherever possible. NickyD
How truly horrible. That kind of disorientation sounds frightening, terrifying even. I had no warning about the side effects — merely a glancing aside that I might get "moody." And no one — no one —mentioned that the effects might be permanent. I'm not sure what I would have done had I been warned (I had to get my platelets up quickly and couldn't get a different drug until it was proven that Prednisone was harmful to me), but at least my family and friends wouldn't have been so bewildered. What frustrates me now is the lack of response I get to my continued assertions that I'm still groping for words, for memories, and that I'm still fatigued. Has anyone heard of remedies for these issues?
I got used to saying sorry to people when I was like a bear with a sore head, but that happened all the time. I was so impatient and cutting. It was really horrible. I think the symptoms are getting better but it takes time and I get very fed up of it. Like you, I know I am much worse than if I had not taken the drugs. Most people say that they have lapses of memory but theirs are not like the ones we have. I don't think there is anything we can do but I intend to raise it with my consultant next time I see him. Nicky
NickyD,
I'll be very grateful if you'll let us know what your consultant tells you. The Rituximab was much kinder to me, but even that left me with what seems to be permanent fatigue. I'm worried that there's not going to be much left of me soon.
Over 2 years I Put on 40 kilos and am still struggling with it. I would not sleep for up to 62 hours it was truly horrendous also resulting in clinical depression. I had pred, dexamethasone, dapsone, ivig( 15 times) and splenectomy. My drug of choice and the one that has given me 3 lots of 2-3 years remission at a time is rituxin. I am now at 3.5 years after my last treatment.
Mo'W,
You have my unmitigated sympathy. Insomnia is torture and the weight gain only adds to feeling awful about one's self. Three and a half years without infusions is wonderful.
Hi I completely understand what you have been through. I used to go to bed at 11pm and get up for work at 2am. My body was screaming to rest but the steroids would not let me. I put on four stone in weight but that has all come off now. It helped not to be eating for a family of six and then I went to weight watchers to get rid of the last two stone. I found the best thing to do about the extra weight was to accept it, then after a couple of years I knew the appetite was normal so I could control it better. Now I eat much more healthily and not to excess. Hang on in there, things will get better - from one who knows. Nicky
Yes, it happens with steroids
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