High Ferritin Level - What would you ask for or be thinking about?

[ciw]

Methotrexate is what I needed to stop taking. It was making me physically sick for years. I take it to supplement my Humira. Now I am taking Leflunomide to supplement my humira. My arthritis is probably a bit worse than it was with this drug combo but I was tired of feeling sick once a week. Leflunomide can cause hair loss. I do take Folic Acid.

As soon as I read your first post about the hair loss and exhaustion, I wondered if you were on leflunamide. I had a similar story for RA. High doses of methotrexate caused awful bouts of nausea, so I moved to leflunomide which began with mild hair loss and progressed to losing huge clumps of hair/baldness, severe exhaustion, and liver damage. Within a year of stopping the leflunamide, the hair returned and the liver largely repaired itself. Leflunamide worked well for the RA, but the side effects are no joke.

[Philly Mom]

Again....not a physician.
Transferrin saturation greater than 70% is diagnostic of hereditary hemochromatosis, and yours is 41 (100 x serum iron/TIBC)
Assuming your hgb was around 12 or 12.5?

I would ask your doctor about it but not get too anxious about it. Maybe repeat it sometime in the future, and *maybe* see about genetic testing for HH if it's still elevated or if your other iron-related tests start trending in an abnormal direction. One of my students actually had some strange symptoms a couple of years ago, but she didn't have the classical HH presentation. It turns out that she does have HH, but it was a more rare mutation in the gene, not the typical mutation in the HFe gene that causes HH.

I'm also still super curious about your blood type. It's the only thing I've found that might be a reason why my ALP is always low. I also usually have a low or low-normal WBC count, as does my dad. Sometimes it's nice to have labs repeated occasionally so you can see what YOUR normal is. Remember that the reference ranges are based on the general healthy population from a range of sexes and ages, and your normal may be slightly off from the general population.

I don?t have my hgb numbers. She?s going to re run the tests in a few weeks.

[Philly Mom]

As soon as I read your first post about the hair loss and exhaustion, I wondered if you were on leflunamide. I had a similar story for RA. High doses of methotrexate caused awful bouts of nausea, so I moved to leflunomide which began with mild hair loss and progressed to losing huge clumps of hair/baldness, severe exhaustion, and liver damage. Within a year of stopping the leflunamide, the hair returned and the liver largely repaired itself. Leflunamide worked well for the RA, but the side effects are no joke.

This is really helpful. Thank you. What are you on now?

[KpbS]

My DD has JIA and we are somewhat new to this journey. Trying to find the right combo of medicines for her. She had a very low ferritin and needed to supplement with iron.
You might ask you rheumatologist about trying a different biologic. There are quite a few out there now. I hope you can feel better!

[ciw]

This is really helpful. Thank you. What are you on now?

I have been on Orencia for around four years now. This year, a low dose of methotrexate was added back into the mix because of a new autoimmune issue. The orencia has worked well relatively speaking for the RA, but it is a constant insurance battle. There is no biosimilar on the market for Orencia, so it is expensive, and the insurance companies fight covering it.

[Philly Mom]

I have been on Orencia for around four years now. This year, a low dose of methotrexate was added back into the mix because of a new autoimmune issue. The orencia has worked well relatively speaking for the RA, but it is a constant insurance battle. There is no biosimilar on the market for Orencia, so it is expensive, and the insurance companies fight covering it.

Thank you! Insurance is one of the main reasons I don't want to even think about changing medications. I don't mind the morning stiffness so long as I am not having any damage. I think I need to ask for X-rays to monitor if there is any damage.

[KpbS]

Good idea. I think you would want MRI’s or ultrasounds also.
Hugs