Staci Marsh

My 13yr old son is about to start Enbrel. My son & I both have hla b27 AS I do not know if I inherited from my mom or father. I suspect its from my father but not confirmed. Question - My father has had B-cell Lymphoma 2'xs so far. If Gene came from him would my son be at an even greater risk for lymph or cancer as stated by enbrel than the already high risk warnings. FYI my father has not been active in my life I have already tried to ask w/ no success. I have called Drug co. No help?

Asked by Staci Marsh 1 year ago as and medication cancer hla-b27+




DeAnna Holman
1
 
I have been taken off Enbrel because the studies released in Europe show it does not stop the disease, but only takes away discomfort and pain. It does offer a better quality of life. My Dr. Weighed the risks and decided since I have three small kids, he doesn't like the risks. It is all about deciding after weighing the risks. I am praying for some new medicine that will actually stop the disease AND give better quality of life.

by DeAnna Holman 1 year ago

Jerry Grynspan
1
 
Actually you have a 2 part question with a 2 part answer. If your father had cancer you and your son are at increased risk of cancer. However the other issue is whether Enbrel increases the risk of cancer. Latest research says no. The original statements about cancer risk compared AS patients' risk of cancer when taking the drug to non-AS patients. They made an error in that they didn't recognize that having AS increases the chances of cancer even with no drug therapies. When they compared AS patients on these drugs to AS patients not on the drugs the results indicated that the drugs REDUCED the likelihood of cancer. The FDA is hesitant to remove any warnings without extensive and expensive documented research so the warning stays for the time being.

by Jerry Grynspan 1 year ago

Kancie Straight
0
 
Have you tried removing starch from the family's diet? At LEAST potato starch, ideally all starch? For me it brought pain down to a totally livable level. I would hesitate starting a child out on a lifetime of drugs that could have been avoided. You have to consider that, along with how the disease is affecting him. Everyone's AS is different, and everyone must make the best choice for their own treatment. Sometimes starch restriction will suffice, for others medications are their only relief. I don't envy you, having to make such a decision for another person, especially a child. Wishing you all the best.

by Kancie Straight 1 year ago

Jeffrey Ritter
0
 
Here's an article stating that despite the warnings, TNF-inhibitors may not increase the risk of cancer in young patients.

http://news.nurse.com/article/20120214/NATIONAL02/102130054/0/NE02

by Jeffrey Ritter 1 year ago

Nikki Kerr
1
 
Your son at 13yrs is starting to develop. This is a time when if you are maturing you can react in an inflammatory way. This highlights the fact that your child could be HLA b27 positive. GOOD NEWS IS  the condition often passes once the body has finished maturing. My daughter ( who is HLA B27 positive) started showing signs from age 10 years. With the development of Fibromyalgia ( 13 pain sites out of 18) then Rheumatoid Arthritis in both knees in the next two winters. Home schooling occurred and treatment included swimming and anti inflammatory medication. I also had a hair sample done to test if she needed to be supported in a nutritional way. It showed she was also depleted in most key elements suggesting malabsorption. THE KEY IS treat the gut for auto-immune reactions. Drugs are a short term option to manage pain and inflammation with unknown side effects (they are not a long term option!). Research has been done to show the condition can be treatable through diet. Rule: No Starch when you have inflammation. Low starch diet outside of this time. Check out this link to learn more: http://www.youtube.com/watch?v=ZFFmqH66ORM, called Professor Alan Ebringer on Diet and Ankylosing Spondylitis, also
http://www.youtube.com/watch?v=G-_X5OrTeas&feature=watch_response, The IBS Low-Starch Diet.mp4 hope this helps you. My daughter is 26yrs old and has not had any recurrence since 13yrs old ! So don't panic !!! I know its tough, at the time I thought she was going to be like this for the rest of her life...... Not so.

by Nikki Kerr 1 year ago

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My 13yr old son is about to start Enbrel. My son & I both have hla b27 AS I do not know if I inherited from my mom or father. I suspect its from my father but not confirmed. Question - My father has had B-cell Lymphoma 2'xs so far. If Gene came from him would my son be at an even greater risk for lymph or cancer as stated by enbrel than the already high risk warnings. FYI my father has not been active in my life I have already tried to ask w/ no success. I have called Drug co. No help?

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