Community Views: Psoriatic Arthritis Treatment and Side Effects
Living with psoriatic arthritis (PsA) can involve many different treatments in an attempt to manage symptoms. One of the biggest challenges comes with also managing side effects from those drugs. Too often, the side effects feel worse than the PsA symptoms themselves.
To learn more about how community members handle this, we reached out to followers of our Facebook page and asked, “What has helped you manage treatment side effects?”
When side effects feel worse than symptoms
The question generated some great discussion about the struggles and approaches to managing drug side effects. However, it is important to remember that all bodies are unique, and drugs affect each person differently.
While some people might have negative side effects from a certain drug, that does not mean you will have the same experience. Always talk to your doctor about your side effects, before making changes to your treatment plan, or stopping drugs suddenly.
Muscle spasms and bone pain
Many community members mentioned muscle spasms and bone pain as drug side effects. For some, this side effect took time to identify as being related to a drug. PsA itself can cause muscle spasms and joint or bone pain, so separating symptoms of PsA from drug side effects was challenging for many.
It may also lead a doctor to dismiss it as a side effect, choosing to credit it as a general PsA symptom.
“Humira caused my thigh muscles to seize.”
“I had my first injection of Humira 2 weeks ago and awoke 2 times with severe muscle spasms down the backs of both legs from thigh to feet. Of course, my doctor said it’s not from Humira.”
“I still haven’t figured out what to do about the bone pain my infusions cause, mostly in my upper arms and legs. I describe it as severe growing pains. I wish I had the option to stop all meds, but I can’t get out of bed without them.”
“I get bone pain with my Methotrexate infusion, mostly in my thigh bones and elbows. I’m glad I don’t get it as much in my skull as I used to.”
Stomach pain and gut issues
Other challenging and uncomfortable side effects mentioned included issues in the stomach and gut. Nausea, diarrhea, and stomach pain presented difficulties for many.
“I was on Sulfasalazine but started having horrible abdominal pain.”
“Severe, nearly unceasing explosive diarrhea for 5 months. I couldn’t go anywhere, and I was terrified to even try to go to the grocery store.”
“Lots of GI issues with Otezla. They are supposed to subside after a month or so. Also, after initial improvement, it stopped working. No point I taking it if it doesn’t work.”
When side effects became too severe and quality of life was impacted, many in the community shared their choice to stop all drugs, with varying results. Keep in mind that you should never stop taking medicine before discussing it with your doctor.
“The generic Arava I was taking was helping with arthritis a lot, but the side effects were completely devastating as far as not being able to have a life.”
“I tried for a year doing various things for side effects: kombucha, probiotics, vitamins, fiber. Only stopping made them go away.”
“Otezla’s side effects were worse than PsA symptoms.”
“I had to quit taking infusions. All of those caused my immune system to shut down, and I kept getting dangerous infections. My doctor now says I can’t risk taking them again as they could kill me because of that.”
Making changes to diet, either in combination with drugs or in place of drugs, has helped many community members manage PsA symptoms and drug side effects. Avoiding known inflammatory foods, particularly sugar, has also made a difference for many.
“I changed my diet and feel great. No more psoriasis and very minimal occasional inflammation as long as I keep to my diet.”
“I did the sugar detox. which helps the inflammation so much.”
“Sugar seems to be a big trigger for me, but it’s hard to avoid it during the holidays, so I’ve had a flare-up for awhile.”
Some mentioned that they manage side effects from drugs and PsA symptoms by using and embracing comfort items. Pets, heating pads or blankets, and warm drinks help many manage the pain flares, whichever the source.
“Rest, heat (my heated blanket is saving me during these cold snaps), plenty of water, tea, and visiting my parents’ cat is crucial to my support. As well as knowing when to sit down and rest when the pain starts creeping up.”
“My dogs actually do help. My service dog tells me when it’s time to sit, alerts when my blood pressure, pulse, or blood sugar is off, and her presence is calming.”
“Acupuncture, heating pad, and the love of my family.”
“Having my dogs to comfort me and soothe me.”
It can be hard to manage a treatment that may not agree with you. It can be even more frustrating if your rheumatologist doesn’t seem too sympathetic. Many times, it takes a while to know if a medicine or treatment is working. What an unfortunate waiting game.
Thank you to everyone who joined the conversation and shared your experiences. We value your willingness to help others in our community.
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