I truly hope what I will share is not typical for many out there on biologic therapy. I really hope it is just my own misfortune that I have the experiences that I have had as I read that many of these drugs are doing absolute miracles for many people out there. And I love hearing good news stories.
After all we all want to think that biologics will hold the answers for many of our pain and challenges.
To date I have had 2 different biologic therapies which I spent a year trialing, and trying to tolerate in the hope that my body would adjust to the many side effects I was experiencing. But this is not one of those stories. Sadly.
I experienced severe and difficult side effects to both of these drugs which made living even more compromised and difficult.
I really wanted to acclimatize to the drugs and I did my utmost to ‘hang in there’ while they did their job … But I just couldn’t cope.
The side effects ranged from excruciating stomach pains, headaches, vommiting, fatigue … and the list went on… It was truly awful having to admit that I could tolerate them no longer.
My Rheumy agreed a ‘medical break’ was needed and I immediately ceased biologic therapy.
Fast forward a year later and my joint pain has progressed and increased which is making me feel torn between returning to the drawing board and rolling the dice once again.
This is not an easy decision to make, like many of the decisions we get handed in the world of Autoimmune diseases.
Sadly my other AI diseases have progressed too and so I feel I must face the topic of medical interventions again. Not that I was ever completely without Meds. I remained on the usual steroids, MTX, plaquenil, immune supressants and other drugs to help with symptomatic issues I have, and I also remain true to my supplements and completary treatments.
My own experience is that biologics are a very serious topic and while I am understandably worried about returning and trialing another drug (there are currently 8 in use in this country) I am truly struggling with the pain and limitations of a progressing disease so my options feel limited.
I have always told my readers that there are very few easy choices for those fighting Autoimmune diseases and I truly wish this wasn’t the case. But if you are one of those who have achieved wonders, even remission, with biologics then I truly congratulate you and wish you continued success, however if you are like me and find biologics a very hard road to travel, then my heart goes out to you and I hope that the future holds more options and help for us in the struggle to manage difficult diseases.
Gentle hugs,
Trish
Trish there are no easy answers. We do the best with what we have or do not get. Blessings sister, your tale and mine today are both cautionary and hopeful. After all most things in our world are both cautionary and hopeful and life turns on.
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Thank you my friend. I don’t want this post to put people off or discourage in the slightest! We are all so different. It’s just trying and doing whatever we can. I hope that is the ribs that came across. π
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Thanks for the honesty of this post! Although I have fibro and not an autoimmune condition, I can related to the challenges of weighing different medical interventions. At the moment I am slowly coming off of one medication and weighing the pros and cons of others because my husband and I are hoping to get pregnant in the near future. For example, I tried switching from long acting tramadol to short acting, but developed digestive problems that interfered a lot with my quality of life. The short acting version was supposed to let me take less overall but I don’t think it will be possible. There just aren’t easy answers to these dilemmas and I think whatever has the least negative impact on your daily life is the best answer. If only that was easy to determine!
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Thank you my friend. In the end health struggles ARE health struggles. I am not a believer in illness hierarchy or one is worse than another… I am always amazed though how we all respond to drugs and therapies in different ways. Our bodies and journey is unique. We can only try and do our best. The chronic community is a great source of understanding in that sense and I treasure it xxxx much love your way
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So true! I was reading an article about how scientists were researching how people learned ‘grit’ and the persistence to keep trying to pursue a goal. I thought…ask a spoonie and it will save you a lot of funding grants! I’m also amazed at the resiliency of the community and the mutual support we all share. One of the things I’m grateful for! XX Take care of yourself. Sending spoons and hugs π
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ππππ»π»
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Trish,
I so sorry to hear of your struggles. Yes, I have heard those words, “You are in remission.” I hope to hear them once again someday, so we must never give up hope. This is a daily battle and I wish only the best for you.
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And to you my friend. They are the words we all deserve ππ
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Trish, I so appreciate your honesty and openness with regards to this topic. I think there are a lot of doctors who want to try the “latest and greatest” medications with us, not really knowing how our bodies might respond. I feel for you, having to take so many different medications. As someone with multiple AI issues, I know what it’s like to juggle multiple conditions and meds. It certainly is challenging! I hope you get to feeling better soon and that you will find a solution to the pain.
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I worried about writing a story that might not be what people want to hear and yet it is my truth. So I decided to explain my circumstances and focus on the fact that there are no easy choices at times. More than one illness means I try not to push too many of my coping boundaries. I have heard so many stories where people have achieved a great deal and I still find this inspiring and positive. In the meantime I progress with caution knowing the road can get very hard.
Thank you for your comments and I DO hope your own journey has had some real positive steps xxx
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Hey, I’ve been on biologics for about ten years now. I get it, it’s hard but you just gotta push through it and roll with the punches one step at a time. You got this!
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Thank you for encouragement. π I hope your current Meds are helpful and I love hearing good news stories.
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Absolutely! I hope your medication is going great as well, or at least improving every day
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Not at the moment but will go back to the drawing board with Rheumy π
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Well I’m on enbrel injections and methotrexate pills. I’ve seen this work with several people with rheumatoid polyarticular juvenile arthritis. I’m not saying it’s for everyone but maybe it’s something to try out
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Yes we will see what the Rheumy says. I am in MTX injections. Yes. Just have to find the right biologic or combo. It’s a road of discovery I guess
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Oh yeah it really is. I was on naproxen forever ago and it was terrible for me. I did MTX injections but now I’m down to just enbrel injections
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Isn’t it amazing how different we are!! It never ceases to amaze. Naproxen is one of those I can tolerate. π
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Wow! Well then perhaps we just have different chemical makeup. Either way, just complete trial and error with medication these days.
Can I ask when you got diagnosed?
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Dx ra? 2010? 2011? I have several AIs. Suffered symptoms of RA for many years though.
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Oh ok. I was diagnosed in 2001-2002 time frame. So it’s just time you need basically. It took me a good 8 years to find the right medication
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