• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Enbrel, Kineret, Actemra

mfairma

Senior Member
Messages
205
Anyone have any experience with these medications for treatment of ME/CFS? If so, was the decision to try one drug over another based on trial and error, immunological tests, or some other factor?

I have heard off-line of a few people who have tried these drugs, but have seen very little on PR (other than the Norwegian researchers' recent mention of Enbrel for non-responders) about applying other RA approaches to ME/CFS.

If everything goes well, I expect to be on Kineret quite soon, and I would like to hear a little about other patients' experience with these drugs.

Matthew Lazell-Fairman
 

ukxmrv

Senior Member
Messages
4,413
Location
London
I've only ever tried Humira (which is like Enbrel for high TNF-a). This wasn't in relation to ME but when I tested with high TNF-a whilst being treated for something else. It resulted in a reduction in swollen glands and sore throats. Also the sore bones in my hands and elsewhere felt better.
As the ME I have is the viral type with flu symptoms this was good.
Sadly I only had a short course of about 4-6 injections and the good effects wore off over time.
 

mfairma

Senior Member
Messages
205
Thanks, ukxmrv. When you say short course, how short? If the course was only a few weeks, I am wondering whether you needed to continue for longer to notice larger changes.
 

Hope123

Senior Member
Messages
1,266
Someone in the group I belonged to used a short course of Humira for in relation to in vitro fertilization and found that it might have helped with her ME/CFS symptoms substantially.

There was a very very small trial of less than 10 people back in 1990 with Enbrel but the paper was not published and the abstract is vague.

I suspect the reason why you might not be getting a lot of responses are because these drugs are expensive, have serious side effects, and most people might not be able to find someone to prescribe and monitor them on it. They are effective tough when used appropriately in a number of different medical conditions. I'd be interested in hearing anyone else's experience; the idea was brought up by one of my docs because, like ukxmrv, I also had very high cytokine levels.
 

Aileen

Senior Member
Messages
615
Location
Canada
I suspect the reason why you might not be getting a lot of responses are because these drugs are expensive, have serious side effects, and most people might not be able to find someone to prescribe and monitor them on it. They are effective tough when used appropriately in a number of different medical conditions. I'd be interested in hearing anyone else's experience; the idea was brought up by one of my docs because, like ukxmrv, I also had very high cytokine levels.
What cytokines specifically are you folks being tested for?
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Hi there, I was so long ago I can't remember sorry. The injections were every week or every two weeks. So roughly that would be 6 weeks to 12 weeks in total. I was the cost that was the problem for me.

I had high TNF-a but a range of cytokines were either very high or very low. Once again to long ago to remember and my medical records aren't in a place that I can access them at the moment.
 

mfairma

Senior Member
Messages
205
I have been tested for a range of cytokines, but the ones that are particularly abnormal are TNF, IL-1, IL-2, IFNy, IL-12, IL-4, IL-5, IL-10, and IL-13. These are all high or very high, except for IL-10, which is very low.
 

Hope123

Senior Member
Messages
1,266
I have been tested for a range of cytokines, but the ones that are particularly abnormal are TNF, IL-1, IL-2, IFNy, IL-12, IL-4, IL-5, IL-10, and IL-13. These are all high or very high, except for IL-10, which is very low.

My values fluctuate but some of your high cytokines are similar to mine. Humira and Embrel are both TNF-alpha inhibitors vs. Kineret which is IL-1. These were all options my doc gave me because I had very high values in these; she also offered other immunomodulator options based on my other labs. However, she doesn't suggest these for any and all CFS patients as some CFS patients do not have elevated cytokines or have patterns which do not fit with known immunomodulators which target specific cytokines. My sense is that there is probably a subgroup of CFS patients who have an inflammatory/ infectious process going on while the others do not or it might be a matter of at which stage (early? late?) that people are at in their disease.

Many labs have cytokine panels but the panels vary depending on which lab does it and the testing has to be done carefully. You also need a doc who can interpret the results well and has experience using these strong medications so that also limits the number of people who have access to them.
 

mfairma

Senior Member
Messages
205
Oh Happy Day!

I'm getting my first month's supply of Kineret on Wednesday. It will be self-administered, with one dose a day. I will try to update this thread every few weeks to let everyone know how things are progressing. Additionally, I purchased a little electronic device recently that should allow me to load heart rate data from my day into an Excel spreadsheet, so I can chart heart rate over the course of the day and over time. It will be interesting to see whether any changes from Kineret, if they occur, are reflected in the heart rate data. If the electronic unit works, I'll post another thread with a brief review of it and some sample excel charts.
 

mfairma

Senior Member
Messages
205
I had my first injection last night. It went fine, though it was a bit more painful than I assumed it would be. Self-administering was easy and aided by a detailed guide included in the packaging. No adverse reactions of any sort noted.

On another note, I found the heart rate data logger doesn't work with the heart rate monitor I have. It should work with a Polar T31 heart rate belt and monitor. If anyone has one of those types of monitors and would like to give the data logger a try, send me a note and I will ship it to you. I was hoping to use it to create an additional record of disability for my hearing in January.
 

Ninan

Senior Member
Messages
523
I had my first injection last night. It went fine, though it was a bit more painful than I assumed it would be. Self-administering was easy and aided by a detailed guide included in the packaging. No adverse reactions of any sort noted.

On another note, I found the heart rate data logger doesn't work with the heart rate monitor I have. It should work with a Polar T31 heart rate belt and monitor. If anyone has one of those types of monitors and would like to give the data logger a try, send me a note and I will ship it to you. I was hoping to use it to create an additional record of disability for my hearing in January.

Hi mfairma! Did you notice any effect from Kineret?