Does anyone have any advice, ideas on which biologic works best to reduce fatigue. I'm still struggling with debilitating fatigue at times. It's affecting my ability to work and do every day tasks.
I'm currently getting Remicade infusions. I had my 6th infusion last week and no help. I did notice a benefit after my 4th infusion that gave me normal energy for about 11 days - but it hasn't helped since. Previously I took Humira which didn't help with my PsA symptoms.
Thanks !
Frances
Hi Frances, I’m pretty are they all work differently - some actually bind to the TNF and neutralize it, others bind to the receptor sites on normal cells (ie the spot where the TNF would usually “dock” and cause another cascading response), and the new ones target other little inflammatory bits - IL17, IL23 etc.
Because we are all so different, they all then have a different effect on each of us.
I’ve only tries Enbrel and Humira. Personally I found the Enbrel to have the best effect on fatigue out of the two, but when I had to stop the Humira recently, I discovered it was having a bigger effect than I thought!
Thanks Jen.
Jen said:
Hi Frances, I'm pretty are they all work differently - some actually bind to the TNF and neutralize it, others bind to the receptor sites on normal cells (ie the spot where the TNF would usually "dock" and cause another cascading response), and the new ones target other little inflammatory bits - IL17, IL23 etc.
Because we are all so different, they all then have a different effect on each of us.
I've only tries Enbrel and Humira. Personally I found the Enbrel to have the best effect on fatigue out of the two, but when I had to stop the Humira recently, I discovered it was having a bigger effect than I thought!
Hi Jen,
Those are the words of my Rheumatologist, "sometimes you don't realize how much a med is helping you, until you stop taking it"! He asked me if I thought I might be better without Enbrel, my immediate response was "NO"!!!
Frances I have been on Humiria, Enbrel X 2, Simponi and now on Remicade. I found when a TFN is reducing my inflammation and other PsA symptoms it also reduced my fatigue. Remicade I started in December but I did not see significant results until June though like you I had one ten day stretch with no symptoms. She has increased my dose once to 500 mg but has not shortened the interval yet, still 8 weeks. All the other biologics gave some relief, Enbrel the most for a year each time but then like the others stopped working. I have some fears Remicade will stop working for me too so I still take mtx 17.5 mg subq every week. It is an attempt to keep my over enthusiastic immune system in check. I hope you get better and more relief soon. I find in times of flares or medication non-function I have to really set priorities and spend some of my precious energy finding time and energy savers like ready made meals and rides for my son. I just can't do everything. Remember to take good care of you.
The biologics that target directly TNF Alpha. Also, losing weight should help because obese people typically have moreTNF Alpha.
I’m sorry to hear that you didn’t get a fatigue break after this last infusion. Is the plaquenil helping?
Do you have a study or research to show that obese people have more TNF Alpha?
mataribot said:
The biologics that target directly TNF Alpha. Also, losing weight should help because obese people typically have moreTNF Alpha.
Hi Frances,
Sorry you are still fighting the fatigue. It is SO hard to deal with!
Not to sound flippant, but the meds that have reduced my fatigue the most are....whatever meds are keeping my disease under control at the time.
When my meds work, my fatigue lifts. Simple as that. After 30 years of aggressive treatment, there have been more med combinations that helped (disease and fatigue) and more that didn't than you could shake a stick at :)
Best wishes!
Thanks Marietta.
Marietta said:
Hi Frances,
Sorry you are still fighting the fatigue. It is SO hard to deal with!
Not to sound flippant, but the meds that have reduced my fatigue the most are....whatever meds are keeping my disease under control at the time.
When my meds work, my fatigue lifts. Simple as that. After 30 years of aggressive treatment, there have been more med combinations that helped (disease and fatigue) and more that didn't than you could shake a stick at :)
Best wishes!
Plaquenil isn't helping yet after 5 weeks and the doc isn't optimistic that it will help even though it can take up to 3 months to start working.
Anyone see plauenil benefits after a month?
GrumpyCat said:
I'm sorry to hear that you didn't get a fatigue break after this last infusion. Is the plaquenil helping?
I didn't notice a change immediately with Plaquenil. As a matter of fact, I didn't really notice it working at all. Until after a few months or so, I realized that when I walked, I was no longer walking through pea soup. I was still napping a lot, and did for quite a while. At that point I had an almost 2 year old who LOVED his long nap, and I loved napping with him. But the extra naps and laying down slowly but surely disappeared most of the time. I still fight fatigue, but I have never returned to that extreme level of fatigue. No more naps though, for my now almost 7 year old.
Thanks Stoney. So are you saying it took several months to notice a reduction in fatigue?
Stoney said:
I didn't notice a change immediately with Plaquenil. As a matter of fact, I didn't really notice it working at all. Until after a few months or so, I realized that when I walked, I was no longer walking through pea soup. I was still napping a lot, and did for quite a while. At that point I had an almost 2 year old who LOVED his long nap, and I loved napping with him. But the extra naps and laying down slowly but surely disappeared most of the time. I still fight fatigue, but I have never returned to that extreme level of fatigue. No more naps though, for my now almost 7 year old.
This study: http://www.ncbi.nlm.nih.gov/pubmed/14679176 is particularly intersting because of all the new IL-6 meds some of which haven't had conisitent results for PsA. There are some new studies proposed where weight will be part of the selection criteria.
There have also been a plethora of studies of late linking pain levels and natural pain control mechanisms to obesity. I know we hate to hear it. but there is no getting around it.
Marietta said:
Do you have a study or research to show that obese people have more TNF Alpha?
mataribot said:The biologics that target directly TNF Alpha. Also, losing weight should help because obese people typically have moreTNF Alpha.
Lamb, do you know of any studies that are accepting applicants?
tntlamb said:
Read away: https://www.google.com/search?q=tnf+alpha+amounts+in+obesity&oq...
This study: http://www.ncbi.nlm.nih.gov/pubmed/14679176 is particularly intersting because of all the new IL-6 meds some of which haven't had conisitent results for PsA. There are some new studies proposed where weight will be part of the selection criteria.
There have also been a plethora of studies of late linking pain levels and natural pain control mechanisms to obesity. I know we hate to hear it. but there is no getting around it.
Marietta said:Do you have a study or research to show that obese people have more TNF Alpha?
mataribot said:The biologics that target directly TNF Alpha. Also, losing weight should help because obese people typically have moreTNF Alpha.
Here's one site: http://www.centerwatch.com/clinical-trials/listings/condition/538/ These are clinical trials recruiting locally.
This is my favorite site: you can spend hours: http://www.centerwatch.com/clinical-trials/listings/condition/538/
Even international studies will report to this site.
The"data" studies are done from medical records and physician reporting and are usually done by questionaire. The weight/pain connection for example in one case was based on one MILLION charts.
Wow ! This is a great site ! Thanks for sharing. I saved the link and will check often. Didn't see anything for my state.