Adalimumab Patient Views

I take adalimumab for ankylosing spondylitis and have for years before covid. My questions are for others who take a similar drug:

• at least in my country blood tests are taken every 3 months to monitor the drug. If you’ve had yours taken - Have you noticed differences in blood cell counts since covid or in other parameters?

• if you take other medication (such as LDN, betablockers etc.) - Have you noticed side effects or cross effects between all these meds?

• Have you in general heard about how either the biological drug or the underlying disease might affect long covid?

• do you want to share something else regarding this topic?

Neither my rheumatologist or neurologist seen to be very informed about these things, so i’m reaching out to hear about others’ experiences.

Tldr: Has the use of a biological drug to an autoimmune disease affected your long covid treatment or progression somehow?

I took Humira injections for years. Same delivery system and it sucks for like a second and then you’re totally fine. Rarely, I’d inject at the wrong spot and hit some muscle and not just fat and it stung a bit more but never any lingering pain or enough to keep me home or anything. Also I injected my inner thigh, fleshiest part I could find. My at home injections of Humira were better than getting vaxxed in the shoulders at the pharmacy and doing years of allergy shots in the shoulders at my doctor’s office. I’d do five injections a day to get rid of my LC or lessen my symptoms haha

In the beginning my wonderful pcp caught pericarditis on an echo. I was put on colchicine, aspirin and propranolol. On that for two years. Dealt with heart pain and palpitations. Pain and palps was only relieved when I started taking humira for RA. I’m officially diagnosed with pots now and still have heart racing and all the normal pots issues, but humira significantly helped me.

Thank you for the warning and the explanation. No reason to feel that there will not be patients who do need a warning. In around 2005 this individual started taking Humira (for a non-ME related matter) and although they responded well to it, the result could have been catastrophic. There had been no trials in people with ME and CFS and they personally knew of no other patient with their condition taking that drug. The doctor they were under at the time did have other ME and CFS patients and did have an understanding of the disease though. They had a test for TB and TNF-a before taking Humira and they were able to be under the care of a doctor with a knowledge of pathogen reactivation. This individual is one of the patients who does respond well to drugs that target the immune system or target viruses and when they have a choice they've gone for those options because of their good past experiences.

Looking at the website - it’s an anti inflammatory drug - works to lower inflammation in the body and does cross blood brain barrier. Study being conducted by group in Massachusetts. Done by eye institute as it appears drug was somewhat originally focused on lowering ocular inflammation as it can cross into blood retinal barrier. But use of this drug has been found to lower multiple inflammatory cytokines “including Il-1b, Il-18, IL-6, IL-8, sICAM-1 and VEGF.” Per the website.

Research has showed that while typical inflammatory markers like CRP and ESR may not be elevated on blood work - certain inflammatory cytokines have been found to remain elevated in long haulers (specifically mentioned IL-6, IL-8 and TNF-alpha). This has been suggested as an association with ongoing symptoms.