• 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.

Azathioprine/imuran

neweimear

Senior Member
Messages
215
Hello
I posted this in general treatment also, has anyone tried imuran for treating ME, any feedback? It is an immunosuppressant, maybe an alternative to rituximab?? Just a guess!!!
@Jonathan Edwards any opinion on this? My husband is on it as a treatment for ulcerative colitis, works so well for him. As there is no treatment for ME, I have wondered if it would help me. I am severely affected, practically housebound so I reckon there aint much to lose. Eimear
 

Jonathan Edwards

"Gibberish"
Messages
5,256
Hello
I posted this in general treatment also, has anyone tried imuran for treating ME, any feedback? It is an immunosuppressant, maybe an alternative to rituximab?? Just a guess!!!
@Jonathan Edwards any opinion on this? My husband is on it as a treatment for ulcerative colitis, works so well for him. As there is no treatment for ME, I have wondered if it would help me. I am severely affected, practically housebound so I reckon there aint much to lose. Eimear

Azathioprine is a very nonspecific partial immunosuppressant that is useful in certain conditions like ulcerative colitis but of little proven benefit for true autoimmune disease. The reason I stopped using it is that it increases the risk of skin cancer. It makes a proportion of people sick and a small proportion of the population cannot tolerate it because of a genetic susceptibility.
 

neweimear

Senior Member
Messages
215
@Jonathan Edwards I assume you would consider it wreckless to try a small amount daily and see if I get any benefit? It is so frustrating having no treatment options and feeling ill every day. Holding out for the elusive rituximab is a long wait.
 

Jesse2233

Senior Member
Messages
1,942
Location
Southern California
I believe Behan studied azathioprine during the 1980s in post viral fatigue syndrome with inconclusive results. I have seen some anecdotal evidence that it can help in ME patients without a chronic infection. It's a drug I'm also curious about though quite wary of the side effects
 

Jonathan Edwards

"Gibberish"
Messages
5,256
@Jonathan Edwards I assume you would consider it wreckless to try a small amount daily and see if I get any benefit? It is so frustrating having no treatment options and feeling ill every day. Holding out for the elusive rituximab is a long wait.

I think it would be very foolish. Many people who take azathioprine hate taking it. Taking a small dose would seem to be a complete waste of time. The old idea that the answer to immune problems was to 'suppress the immune system' really makes no sense. To get any effect at all with azathioprine you usually need maximum tolerable dosage.

I cannot see the point of taking pills just for the sake of taking something. Over the centuries most people with serious illnesses have had no effective treatment. Many still don't. I looked after many people with rheumatoid arthritis at a time when we had no effective treatment for them. It never crossed my or their minds to take things just to try. Medicines are by and large selective poisons. Paul Ehrlich invented modern medicine with the idea that the poison just does more harm to the disease than to you. Unless one has some idea why that should be the inevitable result seems likely that you will poison yourself.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
What makes ulcerative colitis and crohns disease not true autoimmune illnesses?

An autoimmune disease is a disease where there is an immune response to self. Originally that meant an autoantibody. It could mean a T cell response to sell but by and large nobody has found any. In Crohns and UC there is inflammation but it is not clear that it has anything to do with an immune response to self. Crohns patients do sometimes have antibodies to carbohydrates present on both self and foreign proteins but nobody is quite sure what that means and they are not strictly speaking anti-self.

Unfortunately 'autoimmune' has come to be used as a general term for inflammatory disease and that causes no end of muddled thinking.
 

neweimear

Senior Member
Messages
215
@Jonathan Edwards thanks for that. I will not meddle with imuran. However, I do think that most diseases nowadays have some treatment options. What diseases are there like ME, who have so many sufferers living with a severe illness with NO treatment options? Also, ME has no medical specialism. We only have a handful of doctors who actually believe us. Are there other diseases that leave patients locked in their homes or beds with no treatment for them? I dont think there are...
 

Jonathan Edwards

"Gibberish"
Messages
5,256
@Jonathan Edwards thanks for that. I will not meddle with imuran. However, I do think that most diseases nowadays have some treatment options. What diseases are there like ME, who have so many sufferers living with a severe illness with NO treatment options? Also, ME has no medical specialism. We only have a handful of doctors who actually believe us. Are there other diseases that leave patients locked in their homes or beds with no treatment for them? I dont think there are...

It looks very different from the medical perspective. How about people with stroke, muscular dystrophy, motor neuron disease, respiratory failure from emphysema or pulmonary fibrosis, severe depression and schizophrenia, burnt out juvenile or psoriatic arthritis, Alzheimer's, retinitis pigments, macular degeneration, ... the list is almost endless. And perhaps above all else cerebral palsy, which is very common and for which there is no treatment throughout a life that may be spent entirely in an institution, bed or chair bound - not even in your own home.

I absolutely sympathise with PWME and with the situation of not being taken seriously, but I cannot see that that is a justification for taking treatments without any good reason. There are lots and lots of other conditions that cause as much disability for which there is no effective treatment. My impression is that if anything they are less likely to be tried on treatments than PWME by physicians.
 

neweimear

Senior Member
Messages
215
@Jonathan Edwards I had not thought of cerebral palsy and I know there are some terrible conditions with no effective treatments now that you point them out. The frustrating thing about ME is that there are probably treatments out there that could help us if only the research was better funded. Possible treatments are coming through from Norway. We could be so much further ahead if we were believed and funded appropriately. I think all ME patients believe this and anger comes from the lack of movement on it...thank goodness that is now changing. Alzheimer's is devastating but millions are being spent researching it. Researchers are actively looking for answers. Not so for ME until recent years and our disease is still so underfunded. I am no doctor but if rituximab, cyclophosphamide and ampligen can help subsets of our patient, we can be helped if sufficient funds are invested.