New to biologics and need advice

Posted by lisabeans @lisabeans, Oct 3, 2019

I am going to be starting biologics and I have to decide between Humira and Embrel. Anyone have any words of wisdom for me?

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@dontknowitall53

Hi..newbe to all of this.. anyone here heard of these?USTEKINUMAB VIAL and or Stelara

I am not afraid of needles
I think my specialist is going to put me on biological in November. I first have to use methotrexate and plaquenil and predesone for 6 months before I get approval for biological meds..the gov here pays most of it

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That sounds like a very heavy protocol to me!
I have been on biologics for over 20 years & only took one drug at the time.. why 3? What are you treated for? Prednisone alone is very difficult to handle.. it really thins your skin which is a problem later on in life..very hard to get off that drug.. & I felt so agitated with it.. could not sleep..hated it!I also prefer to be on a med that has a history behind it .. that has been on the market for a while.. why should we be « cobayes » for big pharmas? Good luck! 🍀

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Hello there. I was on Enbrel for quite a while. Maybe two years. It worked very well for me and when I started it I was in terrible shape I had just come out of the worst flare of my life. Good luck.

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@atina

That sounds like a very heavy protocol to me!
I have been on biologics for over 20 years & only took one drug at the time.. why 3? What are you treated for? Prednisone alone is very difficult to handle.. it really thins your skin which is a problem later on in life..very hard to get off that drug.. & I felt so agitated with it.. could not sleep..hated it!I also prefer to be on a med that has a history behind it .. that has been on the market for a while.. why should we be « cobayes » for big pharmas? Good luck! 🍀

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She said she is choosing between two meds not several.

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I've been on two different biologics that needed to be infused. I went once a month for an hour or two, and had my treatment. However, I had reactions to both of these. The first one caused me to go into anaphlactic(sp?) shock, and the second one I was on caused such severe Sjodrens symptoms I was ready to claw my eyes out. I took myself off that medication- I couldn't stand it anymore. I am currently on Xeljanz which is a pill I take every morning and night. It hasn't caused as much problems for me, and I got really serious about changing my diet after seeing a couple of women doctors who said they put their RA into remission by changing their diet. I am now taking half the dosage (with my Dr's blessings) and it's working just fine. Xeljanz has been found to cause blood clotting in some cases, so I also take half an aspirin 2 or 3 times a week. Btw, my doctor told me that I have "a particularly nasty version of RA". If you're interested in the diet changes, research RA diet on You Tube.

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I was on Humira for 5 years; of the many other biologics and treatments I’ve been on (Remicade, Methotrexate, Cosyntex, Otezla, Orencia…and lots of Prednisone) it worked the best for me and made me feel like a “normal” person without frequent joint & eye issues. I went off Humira only because it began suppressing my immune system way too much, causing a host of other issues. (I have no history with Enbrel because my Rheumy leans towards biologics which also treat or can have an impact on Uveitis, which I also have along with PsA. )
Good luck!

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@psilvalc

Hi @dontknowitall53! I had the same problem three years ago. Methotrexate and prednisone were no longer working for my RA/AS after ten years. My doctor suggested trying biologicals. I was nervous at first about the potential side effects but I decided to give it a go since my previous treatment was not effective. I am glad I did. I have been so much better with my new treatment. I got to realize methotrexate and prednisone are very harsh medications that require monthly lab work. I had all sorts of problems associated with these two meds: headaches, fatigue, constant bloating (occasionally nausea and vomiting), weight gain, difficulty sleeping, and mood changes (feeling irritable or anxious most of the time). I thought all these things had to do with my RA/AS somehow. I was wrong. My doctor got me started on Humira.

I am not going to lie to you. It is a bit scary to inject yourself in the stomach or your thighs. I had a nurse coming to my house shortly after I receive the first injections sent by the pharmaceutical that makes Humira at no charge. She brought me a training kit and the sharps container. She was very patient in showing me the ropes on how to inject myself and afterward, she will call to see how I was doing. Within a few weeks of taking Humira, I felt great. My headaches, stomach problems, and mood swings went away. My RA/AS improved tremendously. I was a new man. Now I can keep almost a normal life. A word of advice if you are going to take Humira. Do not go for the syringe. Go for the pen, trust me. They told me the pen hurts more but it is not the case. It is easier to use and you can do it on your thighs. The syringe is recommended to be used in your stomach. Do not even go there.

Humira worked wonderfully for about three months. I did not notice it at first but every time I administered my injection I had a rash on my legs and arms. I did not know but I had an allergic reaction to one of the components of Humira. My doctor switched me to Simponi, which is similar to Humira and that fix the problem. My experience with biologicals has been positive after three years of taking them.

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@psilvalc hi, Ive been also already 3 years on a biologic (Ilaris) and has been the best treatment for my condition (still disease) before I was on metroxetate & prednisone and then plaquenil. Those wasn’t closely effective as the biologic that helps with mood and all issues. I wanted to know, in your case, if you have experience that mixing the biologic with any other medication, the effect of the biologic diminish as if both meds compete. I use the injections every 28 days but I find that the effect lessens at day 24 or 1 week before the next shot. I’ve tried to add bupropion to lift brain fog during the 3 week and it shadowed completely the effect of the biologic so I stopped it. Now I added some cbd oil (that worked perfect years ago) and it dies t feel ok. I was wondering if some meds can compete with the biologic? Thanks for your help

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