Anyone here taken imatinib/gleevec?

bspg

Plant Queen
Messages
528
Likes
1,962
Location
USA
My doctor's want me to try it and I'm curious what others experiences have been with it.

If you have tried it:

1. Did it help your MCAS?
2. Did it help your ME (energy levels, PEM or flu-like symptoms) in any way?
3. Did you experience any problems or side effects from it?
4. What dose were you on and how did you know it was/wasn't helping you?
 

Ema

Senior Member
Messages
4,719
Likes
6,873
Location
Midwest USA
My doctor's want me to try it and I'm curious what others experiences have been with it.

If you have tried it:
1. Did it help your MCAS?
No change

2. Did it help your ME (energy levels, PEM or flu-like symptoms) in any way?
No change

3. Did you experience any problems or side effects from it?
No, maybe a little bit of foot cramping, which I hear is typical.

4. What dose were you on and how did you know it was/wasn't helping you?
100-200 mg/day. I can't remember now how long I trialed it for, but at least a month, if not more.
 

Ema

Senior Member
Messages
4,719
Likes
6,873
Location
Midwest USA
Thank you @Gingergrrl and thank you @Ema! :)

@Ema I'm sorry it to hear it didn't work for you. Have you found success with anything else?
For better or worse, my MCAS was no longer the worst of my problems when I found out about imatinib. I wish I could have tried it, or the Xolair, in 2008-9 when I was reacting to plain air. But I've been (knock wood) stable for many years now, mostly with antihistamines.

I still do take antihistamines, but just clemastine at night because it makes me sleepy and olopatadine eyedrops because they help me tolerate my contacts. I did the whole protocol though for many years with Zyrtec, cromolyn and quercetin.

Beta-hydroxybutyrate, an endogenous ketone, is suppressive to the mast cells as well and going back to a ketogenic diet produced the greatest bump in health I've had in a decade. This article reports:

From these observations, we speculated that endogenous D-BHB which was dramatically increased by food deprivation, plays an important role in the attenuation of hypersensitivity symptoms through suppression of mast cell activation.

Increases in intracellular calcium activity are critical for the rapid exocytotic response of mast cells. The signaling pathway leading to exocytosis of mast cells has been well characterized [33]. Interestingly, mast cells delivered from 24 hours of food deprivation and a ketogenic diet showed a decrease in mast cell [Ca2+]i mobilization induced by exposure to compound 48/80. Furthermore, in vitro D-BHB treatment with mast cells delivered from a control diet rat also suppressed degranulation and [Ca2+]i mobilization (Figure 4). G protein coupled receptor-mediated activation of phospholipase C and the associated production of inositol 1,4,5-trisphosphate induces release of Ca2+ from stores in the endoplasmic reticulum and Golgi apparatus through Ca2+-conducting IP3-receptors. Compound 48/80 is also known to initiate mast cell degranulation through direct activation of G proteins, which was proposed to mimic receptor signaling [34,35]. Thus, we speculate that D-BHB might have inhibited downstream of G-protein coupled intracellular signaling pathway, which leads to stabilization of mast cell membranes against degranulation stimuli. Further study is necessary to determine the cellular and molecular mechanism(s) underlying the stabilization of mast cells by D-BHB.
Fasting can also be helpful as it produces changes to the immune system and microbiome, but you don't have to fast to produce BHB if you eat a ketogenic diet.
 

Learner1

Administrator
Messages
3,619
Likes
6,412
Location
Pacific Northwest
My ND had me take C8 oil and exogenous ketones to make it easier to get into ketosis.

@bspg Our ME/CFS doc mentioned Gleevec to me a couple of times, too. He said the first 4 patients he tried it on did very well with it. Why was he recommending it to you, and what did he think it would do for you?
 

bspg

Plant Queen
Messages
528
Likes
1,962
Location
USA
Thanks @Learner1. I'm not really sure. He mentioned it briefly during our last appt but didn't say much other than it is an option.

He and my new PCP actually met in person at a mast cell conference recently. She too mentioned imatinib for me today during our appt but said she doesn't have a lot of experience with it and isn't sure exactly how it works in mast cells. She kept talking about "resetting the nervous system" and it was honestly a weird appt. I kept getting a vibe of disbelief from her and she talked a lot about meditation and having a positive outlook...o_O I was really confused.

Also, I feel that my MCAS is pretty well controlled right now and I really believe that ME is my core issue, so I'm not sure why my doctors are talking about imatinib for me. I'd love to discuss it with Dr. K but I can't afford an appt with him right now.
 

Ema

Senior Member
Messages
4,719
Likes
6,873
Location
Midwest USA
I think imatinib may also work by increasing the clearance of senescent cells...I think maybe these senescent cells may also be capable of inappropriately releasing mediators including mast cells.

Cells have varying life spans. Some cells live only briefly and replace themselves frequently, while others have longer life spans and are replaced only after weeks, months, or even years.11,12 The exact frequency of cell renewal depends on the tissue in which the cells are found.

In the presence of various detrimental stimuli (such as ultraviolet radiation, oxidation, and environmental toxins), some cells undergo changes to their DNA that results in old cells that won’t die when they’re supposed to.13,14 Scientists refer to these as senescent (senile) cells.

Senescent cells pose a significant health problem because many of them produce pro-inflammatory signaling molecules and protein-digesting enzymes that contribute to acceleration of age-related diseases.7,15

A healthy immune system can help remove senescent cells as part of its normal cellular housekeeping. This process is important in cancer prevention.7,16 As bodies age, the immune system itself begins to age via a process known as immune senescence. As a result, removal of senescent cells begins to fail. This leads to an acceleration of aging, and ultimately, an increase in the risk of most age-associated conditions, including cancer.16
http://www.prohealth.com/library/showarticle.cfm?libid=28865

Mast cell disease is characterized by high intracellular calcium and imatinib also can normalize this. I am guessing dysregulated calcium handling is also present in MECFS and other metabolic disorders.

https://www.ncbi.nlm.nih.gov/pubmed/21938724
Imatinib Treatment Inhibit IL-6, IL-8, NF-KB and AP-1 Production and Modulate Intracellular Calcium in CML Patients

I think it's worth a try if you can get it approved. I don't personally think the risks of the drug are any greater than wasting my life to MECFS and/or other conditons, but of course, YMMV.
 

bspg

Plant Queen
Messages
528
Likes
1,962
Location
USA
Thanks @Ema. Those are really interesting. I probably have some senescent cells that could be cleared out. I often joke about being a 31 y.o. trapped in a 80 y.o. body :D

My real concern with taking the imatinib is the immunosuppressive aspect of it. I get sick often and have crazy high antibodies to EBV (including IgM & EA-D) and I worry about making these things worse or becoming more sick than I already am.
 

Gingergrrl

Senior Member
Messages
14,056
Likes
41,960
My real concern with taking the imatinib is the immunosuppressive aspect of it.
@bspg I have never taken Gleevec but I was wondering, as a chemo how does it compare to something like Rituximab in the sense of it being an immunosuppressant? I don't mean in regard to the reason WHY you would take it vs. is it a targeted chemo (like the way Rituximab is a MAB therapy and only targets the B cells and nothing else) or does Gleevec act more like a regular chemo and suppress everything?

I hope that question made sense (and it does in my mind)!
 

bspg

Plant Queen
Messages
528
Likes
1,962
Location
USA
@bspg I have never taken Gleevec but I was wondering, as a chemo how does it compare to something like Rituximab in the sense of it being an immunosuppressant? I don't mean in regard to the reason WHY you would take it vs. is it a targeted chemo (like the way Rituximab is a MAB therapy and only targets the B cells and nothing else) or does Gleevec act more like a regular chemo and suppress everything?

I hope that question made sense (and it does in my mind)!
I'm not sure how Imatinib works. The science is beyond my level of comprehension. I know that it is a tyrosine kinase inhibitor (TKI) and not a monoclonal antibody but I don't know what tyrosine kinases do or why inhibiting them might help MCAS.

If anyone can explain how TKI's work (simply) I would love to know!
 

Ema

Senior Member
Messages
4,719
Likes
6,873
Location
Midwest USA
From my research, imatinib is more immunomodulatory that straight suppressive.

This article states, "Thus, Imatinib exerts potent immuno-modulatory effects in vitro and in vivo, which will be discussed together with their clinical relevance in detail throughout this review." I have the whole article if you'd like to read, but it isn't the easiest going.

The Kinase Inhibitor Imatinib – An Immunosuppressive Drug?, https://www.ncbi.nlm.nih.gov/pubmed/17504122
 
Last edited:

bspg

Plant Queen
Messages
528
Likes
1,962
Location
USA
I've been posting in my mast cell support groups and a few people have spoken up, saying their ME, MCAS, and dysautonomia all improved with Imatinib. :thumbsup:

Obviously everyone is different and it may not work for me but this is encouraging to hear. :)
 
Messages
21
Likes
6
I've been posting in my mast cell support groups and a few people have spoken up, saying their ME, MCAS, and dysautonomia all improved with Imatinib. :thumbsup:

Obviously everyone is different and it may not work for me but this is encouraging to hear. :)
Interesting to know I found a new doctor that wants to prescribe me imatinib I’m nervous to take it, I’m purely formula fed and have been that way for 4 years. So looking for anything that could possibly improve my health I want IVIG more then anything but it’s very hard to find a doc to prescribe it.

I have MCAS and POTS.
 

Gingergrrl

Senior Member
Messages
14,056
Likes
41,960
Interesting to know I found a new doctor that wants to prescribe me imatinib I’m nervous to take it, I’m purely formula fed and have been that way for 4 years. So looking for anything that could possibly improve my health I want IVIG more then anything but it’s very hard to find a doc to prescribe it.
That is interesting that you found a doctor who is willing to prescribe Gleevec (Imatinib) but not IVIG. Does your new doctor think that you would be allergic to the IVIG or is it more of not being able to take on the insurance battle?