I have been helping a friend with her SSDI journey. We were recently texting on what topics i should touch on when social security calls. She was telling me about her takibg statins back in 2014 to 2015, she was having major side effects from the med. Then i remember she had eczema bad ariund that same time. I asked if i was remembering that correctly, she said i was. And of course that led me down a rabbit hole.
Come to find out statins are immunosuppressive, which can cause a slight allergy to become a big one. So i sent the scholarly articles to her. I also remember her having anemia, so started searching statins and anemia.
I found this form of anemia, Drug-induced immune hemolytic anemia, so i found a list of medications that cause this, and one of the meds was Levodopa. I was hospitalized & put in a skilled nursing facility for 2 months because i had severe anemia. At first i was mad, then sad. I had to go through so much crap at the hospital and care facility. I was diagnosed with iron deficiency anemia, because i am young enough female to say it is my menstrual cycle that is the problem. I still dont feel better. I still cant qualify for DBS. I am just tired of the medical roller-coaster. Doctors get so irritated when we research things ourselves, but you can’t trust them to do any due diligence research.
I did research on carbidopa levodopa after my stroke because the Neurologist couldn’t give me any explanation on why I had one. The medical journal I read said that this drug can cause a stroke for a small percentage of people. I know at least 2 people personally with Parkinson’s who have taken it and have had strokes. My Neurologist denies this claim. I am still on the drug because it is the only one that works somewhat with my symptoms. I am not eligible for DBS after stroke. I keep praying that a new treatment becomes available for people like me. I was on a statin up to December this year and recently stopped it to see if my pain will be reduced because it is known to cause muscle weakness and pain.
How in the heck can your neurologist just dismiss that? My MDS will sometimes believe i have dystonia in both legs and other times i dont have dystonia. How much has the stroke affected your mobility? My friend with the statins issue, said she had a general feeling like crap it would get worse after she took the meds. She already had asthma, but her breathing got worse especially while walking. Her legs felt weak, and walking medium to long distances was almost impossible and she had to stop multiple times. She also says she is sensitive to medications. She also kept getting eczema outbreaks. That was in 2016 and her body is still trying to heal from it.
I figured would post the articles i sent my friend.
I have been having difficulty with movement to the point I switched to a new Neurologist in December who with my suggestion to stop the statin. I am still having pain and can’t walk much because of weakness and breathing issues. She said it could take some time to get it out of my system. Problem is stopping it puts me in a high category for another stroke. I have the skin issue like your friend as well to the point I have to stay on a small antibiotic daily to control it along with other medications. I think because of my walking difficulties it caused my non parkinson side to get plantar fasciitis. It has been one issue or another. I have had the disease for 13 years so at this point one wonders what is progression or what is caused by side effects of medication. What I can say is I am irritated by both Neurologists because both dismiss the drugs being the cause of many symptoms but like your friend some symptoms go away when you stop them medication or after a while will stop if you stop it long enough to get it out of your system. Another issue like I am finding is they don’t really know and want to blame another potential illness that they can’t diagnose and refer you to someone else. Then cycle begins again more medication instead of finding out if one of your original medications is the culprit. Then there is the issue how can you manage your Parkinson’s symptoms if you go off the only medication that manages the only one that keeps you functioning?
How can so many medications have life altering side effects. A neurologist should consider all side effects possible because we take the meds muliple times a day. Sorry i have been trying answers for the last couple days but my hands are not agreeing with me.
My fruend was put on steroids to help with eczema inflammation. The steroids made her feel better that she didn’t want to stop taking them.
I had plantar fasciitis a few times. I found the footbed of the alegria shoe very comfortable and they work well with orthotics. And the clog style will stay on my feet.
S You have a good point that many times they refer to someone else so they can explain how you are wrong and you might listen. But in reality they should try listening more. Sometimes i swear they have a section in our files where they label or tag you as a certain type of patient. And they are wrong. Honestly i am so tired of the medical world. I am afraid of going into a assisted living place. My guy doesn’t want to be a caregiver. So i try to stay as independent as possible.
I agree with you. Today I go to a foot injection and next week for Dermatologist for the skin condition. You will find that you will have to go to many different doctors because they all specialize. It sucks because often you get referred to the wrong doctor multiple times before getting treated. I am experiencing that I am getting worse the more medication I am on and I feel like none of the doctors care or know what to do. I am shocked on how little Neurologists know about the symptoms of the disease including those who are movement specialists. Like you my fear is being put in a nursing facility because my spouse and daughter are not capable of being caregivers as they are more likely needing someone to take care of them. Meaning I rarely get support or help and I am expected to keep doing as I did before diagnosis. It is worse now that my daughter has come to live with us temporarily. You would think I would have help but nope I just have one additional person to pick up after. 13 years in I am tired. I hope that you find answers and help that is what these groups do they help us share experiences and knowledge we learn along the way.
Rarely am I speechless. I am after reading your post.
My mother had lots of problems with muscle weakness and pain in her legs due to statins. Unfortunately, by the time the medical community knew and recognized it as a side effect of the meds she had permanent damage. To her doctors credit she did seek to find an answer for the unexplained deterioration of her legs.
A big thank you to @akmcbee for the story on your mom’s issue with Statins, it helped me think of new search terms.
I found this article on statins causing continual muscle wasting after stopping use.
When you open the article. There is a Go to link across from Abstract. In that drop down menu select Discussion. The 2nd paragraph.
Yes! This description fits what happened to my mom. In the end her legs were somewhat misshaped from the damage. I wish you all the luck in the world as you try to get answers.