Mother recently diagnosed

DetoxRN

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Joined
Aug 8, 2019
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CALS
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03/2019
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NJ
Hopefully I’m posting this is the correct area. My mother was recently diagnosed with Bulbar ALS, we’ve been going to the ALS Center at Penn Med in Philadelphia. I have a thousand questions, but the one that prompted me to post is one about Radicava.

We started infusions a little over three weeks ago. There were no apparent adverse reactions initially, until about four days after her first course had finished her legs gave out and she fell. Her symptoms up until this point had been speech difficulties and right arm weakness, she never indicated that she had any weakness in her legs. Well, my dad call me yesterday and told me she fell again while gardening. I know one of the side effects of Radicava can be gait disturbances/weakness in the legs. I had my father call the MD and tell them my concerns and they said it wasn’t the Radicava just the progression of the disease. I’m sure I fully accept that because I don’t believe in coincidences.

Does anyone have any insight from experience with Radicava whether this common? Are the nurses at the doctors office right and it’s just the disease progressing? I know that there is no way of knowing for sure, but the more information we have the better decisions we can make. Thank you so much for your help and support.
 

Nikki J

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Welcome I am very sorry about your mother.

I don’t take Radicava. From reports it seems like a lot of people say they can’t tell if it slowed things down. Some swear it helps at least stabilize And I have heard a few people say they believe it made them worse. It is so hard to know because progression does happen and there can be tipping points that result in a sudden change. Legs might be weakening in some muscles are you are ok then another gets affected and you fall

What does your mother want to do? Try another round? Wait and see if she improves after a little more time off it ?

Either way super important to protect against falls!
 

affected

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I'm so sorry for this diagnosis for your mother.
I'm afraid what we find with ALS is just what you describe - suddenly something goes. PALS don't report 'feeling' weak, they just suddenly can't do things.
With the legs there are so many muscles that she is able to walk most of the time, but suddenly a fall happens.
When my husband, bulbar onset, had his first fall he blamed it on the light being bad on the stairs.
The second fall he blamed on something else, and the third... Even in the hospital with serious injuries he wanted the cause to be something else.

What I will say is please encourage her to take safety seriously. My husband suffered head injury and broken bones and other injuries that never fully healed, through multiple falls as he refused to consider safety (he did also have the dementia that is often seen with ALS). We have lost PALS who do not survive falls more often than one might suspect.

Now, is the radicava linked - we really can't tell because this is a progressive disease that moves around the body and never runs to a pattern. The only predictable thing about ALS is how unpredictable it is.
 

nona

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Joined
Oct 1, 2018
Messages
133
Reason
PALS
Diagnosis
02/2015
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NH
I'm sorry about your mother's diagnosis and what your family has ahead of you. As someone with bulbar onset who is not on Radicava, I echo the concerns about her falls. I had minimal failure in my legs until I started falling. Even though I knew it was a risk, I didn't expect it until it happened, and then again and again. I think that Radicava is a potential treatment but will not prevent all of the eventualities of the disease. I'm very sorry.
 

DetoxRN

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Joined
Aug 8, 2019
Messages
2
Reason
CALS
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03/2019
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US
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NJ
Thank you everyone for all the support and information. In the end whatever Mom decides to do, that’s what we’re going to do, I just want to be able answer questions for her should she have them. Thank you again.
 

blitzc

Distinguished member
Joined
Apr 20, 2018
Messages
171
Reason
PALS
Diagnosis
01/2018
Country
US
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OH
So sorry that you and your mother have joined us.

I have been on Radicava since my diagnosis in feb. of 2018. I have done research and had many discussions with my neurologist. There isn't anything in Radicava to cause side effects other than headaches or diarrhea. I also have had several falls.. I truly don't believe in any relationship between the two. Some days in my cycle of infusions I am feeling strong and steady and other days weak and unstable. It really depends upon how much I do in a day. If I do too much, I pay for it.

Listen to the advice of distinguished members ... save energy at all costs. Obtain all devices that will assist her daily living.
 

KenM

Member
Joined
Jun 21, 2019
Messages
19
Reason
PALS
Diagnosis
03/2018
Country
US
State
NC
I am sorry for your Mother's diagnosis.
I have been on Radicava for 1 year. During that time I have had not side effects and both clinical tests and motion sensor tests showed consistent strengthening of both of my legs for 8 months, until last month when one foot/leg weakened. It is impossible to judge from a single case if Radicava helped or not. There are studies underway that are looking at "big n" results to see how effective Radicava is.
 
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