What to Do When You Feel Worse After Starting Treatment
Why this matters
Stopping medication abruptly when symptoms worsen is often the wrong decision and can make things significantly harder to manage. The urge to stop is understandable, but acting on it without speaking to a clinician first risks making things worse.
Step 1: Document what is happening
Note when symptoms started relative to when the medication was introduced, what’s new versus what was already present, and how severity has changed over time. This is the information the clinical team will need to make a useful assessment.
Step 2: Check for common explanations before escalating
Some worsening after starting treatment is expected and temporary. Most medications take weeks to months to reach full effect, and symptoms can transiently worsen before they improve. If a symptom appeared within days of starting the medication and is listed as a known side effect, that’s worth reporting, but may not require stopping treatment. Many side effects are manageable through dose adjustment, timing changes, or supportive medications.
It’s also worth honestly reviewing adherence. Missed doses, even occasional ones, can allow disease activity to return and may explain worsening without the treatment having failed.
Step 3: Contact the clinical team
Don’t wait for the next scheduled appointment if worsening feels significant. Contact the GP or specialist and provide a clear account of what’s changed, when it started, how it compares to the previous baseline, and what impact it’s having on daily functioning.
Step 4: Do not stop medication without guidance
Do not stop DMARDs, biologics, or immunosuppressants without speaking to a clinician first or unless you have been advised to do so in particular circumstances. Stopping suddenly can trigger rebound flares and make it harder to regain control.
What you could do
- Track symptoms and medication timing together so patterns are visible and easy to communicate
- If worsening feels serious or is progressing rapidly, contact the clinical team the same day rather than waiting
- Ask specifically whether what’s being experienced is expected at this stage of treatment, or whether it warrants investigation
This article is for general information purposes only and doesn’t constitute legal, financial or benefits advice. For advice specific to your situation, please speak to a qualified professional or contact an organisation such as Citizens Advice, who may be able to assist you further.
References:
‘EULAR recommendations for the management of rheumatoid arthritis with synthetic and biological disease-modifying antirheumatic drugs: 2019 update’ (2020) https://doi.org/10.1136/annrheumdis-2019-216655
‘2021 American College of Rheumatology guideline for the treatment of rheumatoid arthritis’ (2021) https://doi.org/10.1002/acr.24596