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Lovastatin and AMN

KateNDalton
1 Recommendation

My dad has AMN and has been in a wheelchair for a few years now. He steadily progressed to having to use the wheelchair. He started showing signs in his 20's and is now 64. He still has his stubborness:) He decided against the LO study at KKI due to the fact that he didn't know if he was getting a placebo or not. He lives in Tampa and found a young neurologist who is very interested in researching ALD/AMN and has now put my Dad on 40mg of Lovastatin and a low fat diet. I'm very excited because my dad is a health nut and doesn't believe in taking any sort of medicine. He says that he'll do it and see what happens. I've very hopeful that it can regenerate the myelin sheath as was predicted and he can maybe even walk again. Miracles are surrounding me daily and I can see them if I take the time to slow down and look. Very happy and grateful this morning. Blessings to all of you!

Explore topics in this discussion:

Exercise Asthma Lovastatin Advil Incontinence Dementia Ibuprofen Stem cell transplant Pain Weakness Neurontin Acupuncture Celexa Stress

17 replies

marshallsaunt

Hi Kate this is great news. I will keep you and your father in my prayers. My nephew Marshall is at Duke right now. He has been testing for the last 2 weeks and is to be admitted to the Bone Marrow Unit the 28th of this month to start his chemo then the stem cell transplant. His 10 year old sister was tested and is a carrier of ALD so ive been told to get tested also as a carrier. Funny thing is I have been having symptoms of female ald and have been since I was 34 years old. Its starting to make alot of sense now. I have an appointment with my dr to have the test done. Im a little worried cause I have 2 girls that will have to be tested if I test positive. I have been reading up on the lovastatin and lowfat diet and it seems to be helping alot of the adults with AMN/ALD. I wish your father lots of luck and yes miracles happen all the time. I am seeing that happen everyday. My nephew is a miracle his self us just finding the disease when we did before symptoms started. I also have a 7 yr old that was born at 26 weeks weighing 1 lb 10 oz. The drs say theres no medical reason she is still alive and doing as well as she is. Shes a typical 7 yr old in 1st grade with nothing but cronic asthma. Thats it nothing physically or mentally wrong with her. She is a miracle. Stay strong and have faith your father will do fine. He sounds like a strong man.

KateNDalton

Thank you for the reply. I don't know that the Lovastatin is helping me but its definitely not hurting. Lately I've had trouble with stiffness in the legs and my knees feeling like they are giving out but I blame it on the cold weather. I've been trying to exercise two out of three days but seem to have a hard time recuperating after working my muscles out. I hate not knowing if its symptoms or if I'm just paranoid. I loved reading your miracles and had to read them again because they made me so happy!

KateNDalton

I decided to go off of the Lovastatin. My legs were feeling so stiff and aching so much that I couldn't take it any longer. That was after 30 days of being on the medication. After a week of being off of it, I still have aches and stiffness. Now I'm wondering if it's just being a carrier and not the medicine. I wonder if it means I'm having signs. Do any of you think I need to see someone about this, have an MRI done, see a specialist, etc?

jolocny

HI Kate, I was looking forward to the Lovastatin being a good thing ... have you retested for VLCFA? Aches & stiffness is a definite for ALD/AMN, but is it also a side-effect for the med? There are a lot of meds that cause those symptoms. If I get a chance today, I'm going to check into the side-effects of Lovastatin.

Are you still trying to work out? That was my first clue that I was having problems ~ it would take a day, but then I couldn't walk for almost another! After weight training for more than 15 years that was devastating. But we go on, huh? I've found that keeping the reps low (like ~4) and going really slow (so that I have to think about the full range of movement) that I can continue some of the exercises. It seems really weird, but when I could ride a bike my best time was 90 seconds! HA!

Find something great today that makes you smile!
JoAnn

KateNDalton

My levels are going to get checked this month. I'm anxious to see what they are. Last time my C-26 was 6.12. I'm working out but not running at all like I used to. I walk and it's always trying to get up the stairs that gets me. My legs ache so bad when I go up stairs. And when I go down them they are shaky and I feel so unstable. I keep thinking it's all in my head. Maybe it is! I am a little loopy. Aches in the legs is a side effect of the Lovastatin so maybe that's all it is. Who knows.

marshallsaunt

Hi Kate just wanted to stop in and say hi. Im sure its not all in your head and I feel your pain. Hang in there im praying for you.
Tammy

jolocny

My sister had leg pain with another cholesterol med and it went away after she stopped it and it worked out of her system ~ I hope that's the same for you. I was told by one of my PT's that we use more muscles coming down stairs than going up - due to the control we need for the descent. That's probably why you're less secure coming down. I do hope it was the med! Please let us know your levels when you find out!
JoAnn

Amkahler

I do not have pain in my legs but I have to hold on going up and down stairs because my legs are very unstable. I don't experience any pain - just clumsy.

sjm

Hi (I am in the process of a screen name change as I didn't know there was also a Viva)
Can you tell me if C-26 is dirrectly connected to having symptoms or not? I know the 80/20 false negative on the VLCFA test for female carriers is a possiblility but does that have anything to do with who gets symptoms or not?
Thanks

wenALD

C-26 levels do not connect to symptoms. They are only an indicator that you are a carrier of ALD. My mother never had any symptoms of ALD/AMN and she had the highest levels in the family. My sister's levels were the lowest, and yet she became quite symptomatic in her late 30's and disabled in her 40's. Mine are inbetween the two and I still get around fine with a cane and walker.

I spoke with a doctor related to the Lovastatin trials and he did not say anything to encourage me to try it. He did not feel that it could reverse any damage already done. He said that it would take a controllled study over a long period of time, with alot of participants before they could actually say that it could help.

sjm

thanks for your reply. I also read on one forum it may have been the Australian one. The lady writing said that it seemed to her that each generation gets symptoms worst than the previous one, I think she was referring to female carriers. Do you think there is any fact to that?
Thanks

jolocny

I can't help but wonder if each generation is actually worse or if the more advanced were misdiagnosed, perhaps with MS?

I believe that stress makes our symptoms worse - I know stress brought them on furiously for me. I have not had pain in my legs, just my back, and I'm not sure if that would be considered good or bad! Weakness abounds, just not pain.

One thing I've noticed lately is that I'm getting headaches again. I had not had them for over 10 years and counted my blessings ... now they're back and can be quite difficult to deal with. I understand from reading so many responses that headaches really bother a large number of you, do any of you find any particular treatment to be more beneficial?

JoAnn

KateNDalton

My Grandma was always extremely weak and shaky as she got older. She had dementia but everyone thought it was just her getting older. My aunt is in her 60s and seems fine other than falling going up stairs. I've had bad headaches for years and my only advice it to take Ibuprofen. I'm a junky when it comes to Advil! It's the only thing that works for me. I raked leaves yesterday and Wow! Won't ever do that again! I couldn't finish the lawn and I ache all over. It doesn't matter how many times I work out during the week and how in shape I am (I must not be), I am terribly sore the day after I do anything and have absolutely no energy. It is really irritating. I meditate daily to try and get rid of any stress and headaches/aches. It works while I'm doing it and for about an hour after. I'd like to try acupuncture. I hear that works wonders.

alsrgnt

Hi Everyone,
My name is Andrea and I'm an ALD Carrier and am symptomatic with AMN. I'm 27, and my symptoms started at 21. Yikes! I'd love to chat with any other female carriers and people with AMN. I'm currently in the Kennedy Krieger study evaluating the effectiveness of Lorenzo's Oil. I'm no longer taking the Oil because it made me very sick but is anyone else in it? I unfortunately have a lot of symptoms for being a carrier and young. I have poor balance and gait like most everyone but am almost completely incontinent. (Bummer) I'm going to get Botox shots for my bladder in the near future and have to self-catheterize nightly. My symptoms presented themselves very similarly to MS but I'm so lucky that my neurologist thought to test me for ALD. I was diagnosed in May of this year. Since then everything has changed and I'm committed to learning as much as possible about this and related diseases. I'm currently taking 900mg of Neurontin for muscle spasms in my legs. My symptoms have been intense and have progressed quickly. I'm just hoping that things will slow down soon. I don't mean to frighten other females out there but there are a good number of us that are pretty symptomatic. I'm here for any questions, I have made several great connections with several excellent AMN neurologists, Kennedy Krieger (Johns Hopkins), and the Myelin Project so I'm here to help! Best wishes to all!

KateNDalton

Andrea! I'm so happy that you are here. I'm 27 too! Have you tried any statins? My legs are still aching from what I thought was being on them but now that I've been off of them a couple weeks, my legs are still achy and I'm losing my balance more and more. I go up a flight of stairs and I'm winded and my legs hurt like I just ran a marathon. Does any of this sound familiar? I just have always felt like I'm too young. Also, I can't help but have incontinence when I'm doing push ups. It's like I just can't control it. Thank you so much for writing.

dawsiesmom

Hi Kate!!! Iam an Advil jukie too! Its the only thing that work for me as well. I noticed you take celexa. Does that seem to work for you? Do you have any side effects from it? I still have a full bottle in my cupboard but am afraid to take it because iam afraid of side effects. Any advice?

Quiller

I am sorry to hear 27 symptomatic carriers but yet a part of me is relieved as I began having trouble at age 18 and went to a neurologist etc., and no doctor could figure out what was wrong with me. I am glad more doctors are aware of ALD and of the symptomatic carriers to be able to diagnose both.

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