NRAS

Living in fear of what is to come

I was initially diagnosed in July 2015 with RD and Fibromialgia. Since that date it has been a continuous round of specialists and testing. I have added several new labels and have a very long list of ailments. Unfortunately, I also have a very long list of drug allergies and intolerance. Since July 2015 I have tried all the following drugs:

Prednisone, Methotrexate, paquenil, Lefludimide, Pregabalin, Humira, Orencia, Rituxan, Bisoprolol, to name a few..I was on so many I have forgotten. My body has not responded well to any drug. Also an endless line of opiates. I have been on those for fifteen years. In an effort to gain some control, I ordered my genome via 23and me. It was the best investment I have ever made. With the raw data I have sites which interpreted that data. I now know in advance, how my body will respond to various drugs. This process is called pharmacokinetics. In addition, I know how my system processes nutrients. I manage my inflammation with canabis. The use of a vaporizer, enables me to manage pain as well. I strongly recommend this process for anyone with autoimmune disease. It is invaluable.

10 Replies
oldestnewest

I wish, I understood what you are saying..I have awful problems to with these meds .I'm always sick. They help the pain , but I'm sick, like exhausted. Nauseous..I'm free I push myself I'll get Nauseous. I feel weak all the time. I'm on enbril now. It's working the best so far. But I'm still not productive. I have RA and fibermyalgia. I'll look up these big words. Canibis isn't available here yet., but Hemp is legal to use..if you could keep in touch thanks

1 like
Reply

I am sorry about the language. I have been completely disabled since diagnoses. The best I have felt since this all started is now. I attribute that to my research and internet. I have been able to access all information needed to fully understand all tests, drugs and research in this field. I owned two businesses when I was taken out of commission. Unfortunately, I have not yet recovered enough to work. So I study as an outlet. I live in almost complete isolation now. My husband works then generally falls asleep after dinner lol. I went undiagnosed for at least ten years, likely closer to twenty. For that reason, I have proven very resistant to drugs. But, the research clearly shows we are all very different. The difficulty for our health team is finding a program or treatment that works for you. The best expert is you. The key to finding what works to listen to your body. If what you are doing is not working try something else. I have a lot of drug allergies so for me genetics makes sense. Find what works for you but do not settle. There are many options available. Live your best life.

1 like
Reply

Thanks I did my research and fully understand now. It makes sense, better than years I've wasted on meds and being ill..I will go forward ..

1 like
Reply

I find that very interesting. I contacted 23andme in December 2014, having had RA in an awful flare since the previous July and on reading an article in The Sunday Times mentioning it. I specifically asked if they could find a genetic link to RA but they said they couldn't so I did not proceed with the order. What exactly did you ask to be checked?

Would be very grateful for your reply.

2 likes
Reply

They provide raw data. Then you go to sites like LiveWello and they interprete the data for you. They also provide a link to GWAS data. When you register all your conditions it can look up relavent genetic data. RD has some genetic links but there are also environmental factors to consider. Genetics, for me, are most helpful for pharmacogenetics. How my body processes drugs, also nutrients.

Reply

I justed asked for the blood work every year. Then doc sent me for a r- factor blood test. My sed rate was good and inflammation. But it came up rfactor 479, should be > 40. Very high still. Still doing my homework

Reply

What they do is nap your entire genome and produce raw data. I took raw data to Livewello and a few others to interpret the data. LiveWello does pharmacogenetics and nutrigenetics and also variance reports etc. If you enter your conditions it will provide relevant genes.

Reply

I did something similar to part of that a few years ago called AlCat - Allergy Categorization - and that showed me that I was really allergic, for example, to Tylenol. I used to take it all of the time so something that can help show allergies in advance is hugely important. The AlCat test was $1,000. Do you mind if I ask how much your test was? thanks

1 like
Reply

It was only 249. Then it turned up being free. They took longer to produce results than six weeks. They gave me a full refund and the results. I love this approach. With the raw data they map your entire genome. Then you can find endless programmes to help you interpreted that data. The most useful to me is LiveWello, they provide a variance report which covers all the basics but can also help you understand how to your genome affects you. As you know, most autoimmune diseases affect people in very unique ways. By understanding your genetics you can personalize your treatment. With any luck you will find the approach that is effective for you.

1 like
Reply

Interesting - Thanks for the information Damaged

Reply

You may also like...