I am so tired of medications. I have taken hundreds of pills since my lupus diagnosis in 2017 and I’m sick of it. The sheer number of pills overwhelms me. They take up an entire drawer in my nightstand and fill up a good-sized box in my closet. I take 15 pills a day as a baseline – that number easily jumps into the 20s if I have a lupus flare or a high pain day.
These medications have put me through so much. It seems like I’m constantly starting one or stopping another, and being disappointed so many times in my search for pain relief has been exhausting. Dealing with their harsh effects month after month feels like I’m on an agonizing merry-go-round that just won’t stop. I’ve run the gamut of side effects, from nausea to hunger, drowsiness to insomnia, mood swings to feelings of numbness, night sweats to chills – the list goes on and on.
So I have a lot I’d like to say to my medications. I picture myself standing in a room addressing them one by one and airing my complaints.
Before I get started, here’s an overview of my meds and why I’m taking them for anyone who would like to be familiar with them (or you can click here to skip to my letter):
Plaquenil (hydroxychloroquine) – an antimalarial that works as an immune modulator to treat lupus.
Imuran (azathioprine) – an immunosuppressant that treats lupus.
Prednisone/methylprednisolone – corticosteroids that work as immunosuppressants and anti-inflammatories for lupus, especially during flares.
Admittedly, these first three medications have done rather well treating my lupus. They aren’t the heart of the problem, though they aren’t without faults. My biggest issues tend to be with the medicines I’ve tried for my muscle pain.
Lyrica (Pregabalin) – a nerve pain medication and anti-epileptic also used to treat muscle pain and widespread pain.
Gabapentin (Neurontin) – a nerve pain medication and anti-epileptic that is very similar to Lyrica.
Savella (milnacipran) – a nerve pain medication and antidepressant used to treat muscle pain and decrease pain sensitivity, plus treat fatigue.
Tramadol (Ultram) – an opioid, or opioid-like, medication used to treat moderate to severe pain.
Losartan (Cozaar) – used to treat high blood pressure.
Omeprazole (Prilosec) – a proton pump inhibitor used to treat heartburn.
Lacrisert – a hydroxypropyl cellulose ophthalmic insert used to treat dry eye (it’s a little rod that you put into your eye that is meant to dissolve and act like slow-release artificial tears).
Ferrous sulfate – an iron supplement used to treat lupus-related anemia.
Vitamin D & fish oil – more supplements for my deficiencies.
Valium (diazepam) – a benzodiazepine that I use as a muscle relaxer.
Nexplanon – a rod inserted into my arm that releases progestin (for birth control).
Benlysta (belimumab) – an immunosuppressant biologic that is given as an injection or infusion to treat lupus.
Yes, you read correctly. That is 16 medications! And that’s just my current list. The list of meds I’ve tried and failed or had to change for some reason is even longer. Every year my resolution is to take less medication by the end of the year and, despite my efforts, I’ve not yet accomplished that goal.
Please note that I’m listing what I’m using these medications for – many of them have other uses. Also, I am not a doctor and this does not constitute medical advice; I’m only sharing my personal experiences.
What I’d Like to Say to My Medications.
Plaquenil, I know you are helping a lot. But where have you gone? And if you cause me to lose my vision I will never forgive you.
Imuran, you do a good job controlling my lupus. You were a central part of pulling me out of my depths of sickness. But you’re literally a carcinogen and I’m not cool with that. I would like to part ways eventually.
Prednisone and methylprednisolone, you two are nothing but trouble. You make me really angry, hungry, and unable to sleep well. And I think you might actually be the most bitter pills in the world. But I appreciate the important roles you play during my flares.
Lyrica, I have never hated a medication the way I hate you. First, you relieved a chunk of my pain, but then your side effects went out of control. When I tried to wean off you just a few months later, I learned that you can be unbelievably cruel. I’m leaving you for gabapentin.
Gabapentin, I’m not crazy about you either. But I haven’t much choice because my pain is unbearable. So watch yourself – you’re on shaky ground.
Savella, I swore I’d never take another anti-depressant as a treatment for pain, yet here we are. You are just too extra. You’ve put me through the wringer. You have so many harsh side effects and you are exorbitantly expensive!! Since you seem to be helping with my pain sensitivity and fatigue, you can stay for now. But go stand in the corner.
Tramadol, I’m grateful for you. You do help a bit and you give me energy. It’s not your fault that you’re not strong enough for the job you were given. It’s also not your fault that no one will give me proper pain meds because some people seem to have lost their minds when it comes to using opioids to treat pain. (Which is, gasp, their purpose!!)
Losartan, you stress me out! Why do I have to take you!? I don’t like you. You’re not as safe as I’d like and you have too many recalls. But I have to keep my numbers down to prevent heart issues with lupus, and apparently, I can’t do that without you yet.
Omeprazole, what the heck? I thought I would only need you during my third trimester heartburn drama. Why are you still here?
Lacrisert, you are straight-up weird. You’re so tiny I can hardly find you then I have to somehow get you into the “lower pocket recess” of my eyes?! Doing it correctly feels like a magic trick. Then I end up with a gooey blob in return a few hours later?! This is why I rarely use you.
Ferrous sulfate, you’re high maintenance. I have to take you an hour before a meal and/or two to three hours after a meal. I can’t take you at the same time as antacids, antibiotics, and different types of foods like meat and cereal. Your cannot-do list is so long I have trouble keeping up with it. It’s no wonder I frequently forget to take you.
Vitamin D, you can stay. I’m not allowed to be in the sun (thanks lupus) so I appreciate you keeping me healthy.
Fish oil, are you really helping with my lupus and dry eye like promised? Cause you aren’t cheap.
Valium, could you please be more consistent? Sometimes you help, sometimes you don’t, and you only occasionally make me sleepy. Plus, when you wear off my pain comes right back.
Nexplanon, you are the newest med to join this circus and you might be the first to be evicted if you keep making me bleed!!! I’m over it! You’re also making me quite irritable!!
Benlysta, I miss you so much. Can we get back together? I was hoping you’d take Imuran out of my life. Is there any way that you could let me sleep and keep my hair? I just feel like we are meant to be together.
To my non-regulars: ibuprofen, why do you have to hurt my stomach?? And Tylenol, what is up with the rebound headaches?? I only use you when I’m desperate or have a fever.
Lastly, I would just like to say that there are far too many of you. Some of you need to split. And I don’t mean in half – I mean Sayonara!
What would you say to your medications?
P.S. To my much-loved IcyHot roll-on applicator: thank you for helping numb my pain just enough for me to fall asleep. Bedtime would be so much harder without you. You’re kind of harsh on my skin though.
What I’d Like to Say to My Medications. @MyMeenaLife Click To Tweet
Related: Me vs. Medication.
I guess I’ve felt this way for a long time, as I wrote “Me vs. Medication” back in 2016 when I was only taking venlafaxine, tizanidine, and ibuprofen to manage my chronic pain and illness – before I even knew I had lupus.
Wow! Those are a lot of medications! It must be tough dealing with side effects and medicines that might not be happy with another pill that you have to take and cause havoc to your body. Hopefully you'll get to the point one day where you can cut back on some or no longer need to take them. Right now I don't have to take medication for rheumatoid arthritis – I don't have symptoms just really high blood work says I have it – but that's something I'm concerned will be part of my future. Right now you should be glad you can afford to take them. Too many people have to choose between buying medicine or buying groceries. And speaking of groceries, I hope your husband is buying them right now! With a weakened immune system, I'm really cognizant of where I go and what I'm doing if I'm in a store and concerned if I get the virus will my immune system be unable to fight it. But I'm single, so if I want to eat and want my dogs to eat – I have to shop.
Thank you, Cheryl. It is such a hard balance between taking the pills to treat my condition and dealing with the toll they take. I certainly hope I can reduce them soon! I’m working towards it. I’m glad that you don’t have to take medication at the moment and I hope it stays that way for as long as possible. Yes, that’s a valid point. I’m grateful that I met my deductible in mid-March so that all my meds are covered now. We have only taken a small financial impact (5 days unpaid leave so far) but I’m still glad we don’t have the extra expense of my prescriptions. I can only imagine how stressful and harmful it would be to have to choose between food and medications or to go off meds because you can’t afford them. 🙁 Yes, my husband is the grocery shopper! I have to admit, Toddler Meena and I really miss going to the store with him. But he goes alone and is super careful. I hope you can have safe trips to the store and stay as healthy as possible! Are you able to get groceries delivered? Thank you so much for your kind and thoughtful comment.
It must be difficult not knowing what long term effects any of those medicines might have. I take naproxen twice a day for the osteoarthritis in my hands, specifically sore right thumb and pinky and I'm worried about how it might affect my stomach. Sometimes I try different supplements for the pain, so have a new one on the way so I'll be cutting off the naproxen for awhile and see if there's a difference. There are a couple of grocery chains that deliver or you can pick up curbside at their location. The wait is anywhere from 4 or 5 days for pick up and 2 weeks for delivery.. The problem is anything on sale at the time you order, is probably back to regular price by the time the order is being picked. The stores ask people who are able to do so to shop in store and save the online for people in quarantine or can't get to the store. The only time I checked it out, I needed minimum $40 for pick up service and 5 of the 8 items I chose would be back to the regular price in 4 days, the first available slot for pick up. So I just went in the next day!
It was really scary in the beginning reading all the things like “increases your chances of getting cancer” on the medication brochure (however, untreated lupus also does that). Sorry about the pain in your hands, I can understand how difficult that is to manage. I took ibuprofen for years to treat my pain and it definitely caused me stomach issues. If you’re taking it with food then that’s pretty good protection, overall. I have the same problems with the grocery pickups and deliveries – I don’t want to wait five days just for something to be unavailable and have to go into another store anyway. I also don’t usually plan out that far in advance. But yes, I have a friend who is pregnant and totally relies on deliveries to minimize her exposure and I’d definitely rather her have the slot! Hope we can keep safely shopping and find what we need. 🙂
HUGS!!! Lyrica is awful. It only relieved a smidgen of my pain, but because I felt like rubbish when I missed a dose I continued taking it for several years. When I finally tapered off, my body experienced the worst withdrawal. My doctor compared it as being worse than what someone who was coming off of meth!!! I had night terrors, felt like bugs were crawling inside my body and on my skin, and more horrifying symptoms that lasted for 7 months. I will never take that or anything like it again. Wishing you pain relief without nasty side effects.
Thank you! Wow. I’m so sorry you had to go through that! I was only on it for six months, and that’s part of the reason why I wanted to stop – because I heard the withdrawals only get worse as time goes on. I wish we had better options for pain relief! Thank you so much for reading sharing your experience.
We have an almost identical story. I happened to find your blog looking up Busch Gardens posts on Pinterest. Never did I expect to read almost an exact account of what is going on in my body. We take a lot of the same meds. I started off on the exact same meds as you before my lupus diagnosis, and now I’m on all but the plaquenil which I’ve taken safely for nearing 7 years until the other week I had a terrible cardiac side effect and they took me off of it. My body is now in throws of continual pain and Tramadol does a little but it’s short lived. Thankfully my husband is also wonderful and compassionate caregiver, and I can identify all too well how the fatigue from just taking a shower totally and completely exhausts me on a bad pain day. I go to Duke in NC for treatment and I also have been diagnosed with Sjogren’s Syndrome. Currently I’ve had to stop my 21 year nursing career because my health has to come first. I’ve applied for disability, because I cannot even think for the overwhelming brain fog which is terrible on most days. That along with the pain and incapacitating fatigue leave me unable to concentrate or focus long enough to be able to complete any self-employment or freelance writing gigs. I’m thankful I happened to run across your blog, and I look forward to you sharing more about how you continue to navigate your life with lupus. Thanks so much for your transparency, it certainly helps to know there is someone else out there who understands what I’m presently going through. Quick question have you also applied for disability? Just curious.
Wow, that’s incredible. So glad that you stumbled across my site! I’m really sorry to hear that you experienced that with plaquenil and about your pain. Do you know what they will do to get you back on track without it? So glad you have a caring husband. 🙂 I have not gone to Duke yet, though it’s not that far from me, but many of my lupus friends in Charlotte have gone or do go there. That’s sad you had to stop working, I know it can be really tough to stop doing a job you love. Thank you for all your kind words! I’m currently writing a post about the past ten years of my life and how my lupus has evolved over that time, which I plan to publish this month hopefully. I hope that I can provide some useful information to you through this blog! I definitely understand a lot of what you are going through. I have not applied for disability. I did not work long enough to qualify for SSDI, though it sounds like you have, and my husband makes too much money for me to quality for SSI. It’s ironic, because he doesn’t make quite enough for us to comfortably afford my healthcare needs, our child’s expenses, our home and car expenses, and so on. I don’t think disabled people are often able to live comfortably in the USA, but we certainly deserve to – our lives are hard enough as is. I’ve recently been able to take on more lupus writing jobs through Health Union – only 500 words per article which I can usually manage, and that is going to help a lot with our expenses. But I understand writing is no easy task when you’re flaring or tired. I’ve seen many blog posts over the years about people who’ve successfully applied for disability, so I definitely think you should give it shot. By the way, are you planning a trip to Busch Gardens?
I found your blog today via Pinterest and have read all your lupus-related posts. I was diagnosed with lupus in 1985 and in 2016 no trace of it was left in my blood. Doesn't mean I'm healthy. I've had some really bad flare-ups which together with the mediciations caused permanent damage and I have rheumatoid arthritis which did not disappear (got that when I was 9 or so). It gives me more problems now, but that could be age as well (I'm 60). Tiredness more than pain has been my problem. I sometimes got the feeling I was sleeping my life away.
Some of your medication is on my list as well. Plaquenil I had to stop because it gave me a rash every time I took it. Rash disappeared during the day. My rheumatologist then prescribed Imuran and the rash stayed away, which made me think I had developed an allergy to Plaquenil. The Imuran was stopped 4 years ago. No sign of lupus in my blood, no symptoms either. I still have to take Methylprednisolone (Medrol). Because I took it so long my body stopped making the natural variety itself. I have been taking Omeprazole for years now. I tried to reduce it (advised by the doctor) by taken it every other day, but I had heartburn on every day I didn't take it. I also take half a pill against high bloodpressure but that is a quarter of what I had to take in the beginning. The rest of my medication has to do with the damage I mentioned.
Sometimes I really wish I could throw the whole lot in the bin and never take another pill in my life. Thank God they exist though, otherwise where would we be?
Thank you for sharing your experiences with me. I’m glad to hear that your lupus has subsided and you were able to stop imuran, though it must be really tough to have to continue to take medrol and deal with the long term issues from medications. 🙁 That’s also tough about your RA, I hope you can find something to help with your fatigue issues.
I understand, I would love to just throw out all my meds if I thought I could get by without them! But you’re absolutely right, before medications like these people with lupus/ra suffered mightily and the diseases caused more harm, so I am also extremely grateful that we have them.