plaquenil for me/cfs -- work for anybody?

[used_to_race]

Thanks for the report. Wow, I hope you continue to feel better. Had you been diagnosed with an autoimmune disease that Plaquenil is typically prescribed for -- Lupus, or RA? Just curious. I have not. I have not considered hyberbaric oxygen therapy. It must be expensive? Or did you do it yourself? I'd be curious to see if you continue to do well without the hyperbaric therapy. Laura

I have not been diagnosed with anything except CFS and POTS by a specialist at the Center for Complex Diseases. However due to the severe nature of my GI symptoms (and elevated fecal calprotectin) my rheumatologist thinks I may have atypical IBD. I did all the CCD tests and the only antibody that came back positive was in the Early Sjogrens Panel.

Hyperbaric is expensive and I am really excited at the prospect of returning the chamber - I have been renting it. I’ll be sure to update at the end of this month, even if the news is less than ideal.

FWIW, I haven’t noticed any adverse effects from plaquenil at all and it seems to be regarded as a very safe drug. My eye doc wants to see me yearly as long as I’m on it.

 

[el_squared]

I have not been diagnosed with anything except CFS and POTS by a specialist at the Center for Complex Diseases. However due to the severe nature of my GI symptoms (and elevated fecal calprotectin) my rheumatologist thinks I may have atypical IBD. I did all the CCD tests and the only antibody that came back positive was in the Early Sjogrens Panel.

Hyperbaric is expensive and I am really excited at the prospect of returning the chamber - I have been renting it. I’ll be sure to update at the end of this month, even if the news is less than ideal.

FWIW, I haven’t noticed any adverse effects from plaquenil at all and it seems to be regarded as a very safe drug. My eye doc wants to see me yearly as long as I’m on it.

I go to Center for Complex Diseases too! I see Dr. Chheda. The first several months I have tried SIBO fixes, but I react badly to everything. She suggested I try LDN before Plaquenil. I have had bad reactions to LDN in the past -- I took it here and there in 2015 and 2016, while a patient at Stanford's cfs clinic, but I would get terrible muscle tension. I also tested positive on the early sjogren's panel that I did through Chheda, but I also don't test for auto immune tests like Lupus, or RA. I do have Celiac Disease and have been gluten free for nearly 15 years. Sadly the diet change didn't help. I have fibromyalgia, and so if Plaquenil could help with that, it would be amazing. I'm tempted to try it now the Plaquenil. I definitely have signs of inflammation. My C4A tested very high. And I have been diagnosed with bursitis in my hips. I'm glad you haven't had side effects. A lot of people complain of them.

 

[used_to_race]

I go to Center for Complex Diseases too! I see Dr. Chheda. The first several months I have tried SIBO fixes, but I react badly to everything. She suggested I try LDN before Plaquenil. I have had bad reactions to LDN in the past -- I took it here and there in 2015 and 2016, while a patient at Stanford's cfs clinic, but I would get terrible muscle tension. I also tested positive on the early sjogren's panel that I did through Chheda, but I also don't test for auto immune tests like Lupus, or RA. I do have Celiac Disease and have been gluten free for nearly 15 years. Sadly the diet change didn't help. I have fibromyalgia, and so if Plaquenil could help with that, it would be amazing. I'm tempted to try it now the Plaquenil. I definitely have signs of inflammation. My C4A tested very high. And I have been diagnosed with bursitis in my hips. I'm glad you haven't had side effects. A lot of people complain of them.

I had trouble with LDN in the past but am considering adding it back in now that I am feeling better. I will consider it once I have been stable for a while. But before that I’d like to try sulfasalazine, which is the next step according to my rheum. I’ve never had muscle or joint pain so I can’t comment on that. My rheum said some people have issues with generic plaquenil but switching to name brand usually helps. Hopefully you find something that works for you soon!

 

[el_squared]

So

I had trouble with LDN in the past but am considering adding it back in now that I am feeling better. I will consider it once I have been stable for a while. But before that I’d like to try sulfasalazine, which is the next step according to my rheum. I’ve never had muscle or joint pain so I can’t comment on that. My rheum said some people have issues with generic plaquenil but switching to name brand usually helps. Hopefully you find something that works for you soon!

Sorry, one quick followup question: Why are you seeing a rheumatologist if you haven't been diagnosed with any auto immune conditions and have no muscleor joint pain? Would the sulfasalazine be for bowel issues instead?

 

[used_to_race]

Sorry, one quick followup question: Why are you seeing a rheumatologist if you haven't been diagnosed with any auto immune conditions and have no muscleor joint pain? Would the sulfasalazine be for bowel issues instead?

I started seeing this doctor earlier in 2018 in order to check for autoimmune disease and rule out the usual stuff. He has essentially become my primary physician in terms of coordinating my care, giving me advice and his opinions on the latest things in ME/CFS. He's very sympathetic to the illness and has several ME/CFS and POTS patients in his care. He was the one who prescribed me LDN initially, and he is also the one who prescribed the Plaquenil. This guy has even called other specialists (including at CCD) and talked with them about my case. He will order any test I want. He has other patients with more financial means doing apheresis treatments, IVIG, and various other things. My case seems to be less complex than many on here, and as a result he is better-equipped to help me as a local expert than the doctor I saw at CCD. Recently, a coworker's friend has become very ill with something like ME/CFS, and my rheumatologist's name was the first one I gave him. Unlike certain other "specialists" in Southern CA who have 6 month waiting lists and give useless chinese herbs to their patients, I have no problem getting appointments with this guy and he is a real doctor who actually reads (and publishes) the research.

If you start reading some of the research on some other autoimmune diseases, it's clear that there are many cases which are completely seronegative, yet there is still a diagnosis made and treatment is just as effective. Not all cases are B-cell mediated, so antibodies will not always show up. This is obviously an immune-mediated illness, even if I don't have RA or Lupus. In an ideal world, patients aren't scrambling to find some small evidence of possible autoimmune activity to justify shotgun treatment approaches that don't work for many individual cases. Yet this is precisely what happens in ME/CFS. It's laughable that people with severe disease are taking LDN and vitamins as their treatment. Obviously this isn't our fault, but if it's possible to find a doctor who is willing to try an actual medication like Plaquenil (which isn't even considered strong enough to treat IBD by the way) or Sulfasalazine (again, a relatively low-risk low-reward medication in autoimmune disease) I would imagine that a lot more patients will be seeing progress. TNF-alpha inhibitors are basically the standard of care these days in many autoimmune diseases which are less severe than even moderate ME/CFS, and yet if I do a search on the forums I can't find a single person who has tried Humira or Remicade. I think CCD is planning to get some clinical trials started soon but I don't know where the funding will come from.

 

[crypt0cu1t]

I started seeing this doctor earlier in 2018 in order to check for autoimmune disease and rule out the usual stuff. He has essentially become my primary physician in terms of coordinating my care, giving me advice and his opinions on the latest things in ME/CFS. He's very sympathetic to the illness and has several ME/CFS and POTS patients in his care. He was the one who prescribed me LDN initially, and he is also the one who prescribed the Plaquenil. This guy has even called other specialists (including at CCD) and talked with them about my case. He will order any test I want. He has other patients with more financial means doing apheresis treatments, IVIG, and various other things. My case seems to be less complex than many on here, and as a result he is better-equipped to help me as a local expert than the doctor I saw at CCD. Recently, a coworker's friend has become very ill with something like ME/CFS, and my rheumatologist's name was the first one I gave him. Unlike certain other "specialists" in Southern CA who have 6 month waiting lists and give useless chinese herbs to their patients, I have no problem getting appointments with this guy and he is a real doctor who actually reads (and publishes) the research.

If you start reading some of the research on some other autoimmune diseases, it's clear that there are many cases which are completely seronegative, yet there is still a diagnosis made and treatment is just as effective. Not all cases are B-cell mediated, so antibodies will not always show up. This is obviously an immune-mediated illness, even if I don't have RA or Lupus. In an ideal world, patients aren't scrambling to find some small evidence of possible autoimmune activity to justify shotgun treatment approaches that don't work for many individual cases. Yet this is precisely what happens in ME/CFS. It's laughable that people with severe disease are taking LDN and vitamins as their treatment. Obviously this isn't our fault, but if it's possible to find a doctor who is willing to try an actual medication like Plaquenil (which isn't even considered strong enough to treat IBD by the way) or Sulfasalazine (again, a relatively low-risk low-reward medication in autoimmune disease) I would imagine that a lot more patients will be seeing progress. TNF-alpha inhibitors are basically the standard of care these days in many autoimmune diseases which are less severe than even moderate ME/CFS, and yet if I do a search on the forums I can't find a single person who has tried Humira or Remicade. I think CCD is planning to get some clinical trials started soon but I don't know where the funding will come from.

If Plaquenil brought me from bedridden to working part time and stopped my flares from being severe, Would you say my condition is T cell mediated? I have heard plaquenil works on T cells only, which confuses me because it works for Sjogrens (which is B cell mediated)

I have AChR antibodies, Salivary Protein 1 antibodies , NMDA antibodies and a high ESR/CRP

 

[used_to_race]

If Plaquenil brought me from bedridden to working part time and stopped my flares from being severe, Would you say my condition is T cell mediated? I have heard plaquenil works on T cells only, which confuses me because it works for Sjogrens (which is B cell mediated)

I have AChR antibodies, Salivary Protein 1 antibodies , NMDA antibodies and a high ESR/CRP

Are you taking Plaquenil? Did this happen to you or is this a hypothetical scenario? It's my understanding that any autoimmune disease is partially T cell mediated. Antibodies bind to antigens for CD4 T cells to then come in and attack the cells, no? It seems like there is evidence for clonal expansion in a lot of these disease states, and that is a T cell phenomenon. Sjogren's has many different symptoms that (probably, correct me if I'm wrong) can't be entirely explained by dysfunctional B cells. Plaquenil works on TLR9 which, if up-regulated (I guess it must be in Lupus and RA) will bring it back to normal and reduce T cell activation this way. But if you only have a problem with, say, TLR4, then maybe Plaquenil wouldn't work. It's also just not a very strong drug.

 

[el_squared]

I started seeing this doctor earlier in 2018 in order to check for autoimmune disease and rule out the usual stuff. He has essentially become my primary physician in terms of coordinating my care, giving me advice and his opinions on the latest things in ME/CFS. He's very sympathetic to the illness and has several ME/CFS and POTS patients in his care. He was the one who prescribed me LDN initially, and he is also the one who prescribed the Plaquenil. This guy has even called other specialists (including at CCD) and talked with them about my case. He will order any test I want. He has other patients with more financial means doing apheresis treatments, IVIG, and various other things. My case seems to be less complex than many on here, and as a result he is better-equipped to help me as a local expert than the doctor I saw at CCD. Recently, a coworker's friend has become very ill with something like ME/CFS, and my rheumatologist's name was the first one I gave him. Unlike certain other "specialists" in Southern CA who have 6 month waiting lists and give useless chinese herbs to their patients, I have no problem getting appointments with this guy and he is a real doctor who actually reads (and publishes) the research.

If you start reading some of the research on some other autoimmune diseases, it's clear that there are many cases which are completely seronegative, yet there is still a diagnosis made and treatment is just as effective. Not all cases are B-cell mediated, so antibodies will not always show up. This is obviously an immune-mediated illness, even if I don't have RA or Lupus. In an ideal world, patients aren't scrambling to find some small evidence of possible autoimmune activity to justify shotgun treatment approaches that don't work for many individual cases. Yet this is precisely what happens in ME/CFS. It's laughable that people with severe disease are taking LDN and vitamins as their treatment. Obviously this isn't our fault, but if it's possible to find a doctor who is willing to try an actual medication like Plaquenil (which isn't even considered strong enough to treat IBD by the way) or Sulfasalazine (again, a relatively low-risk low-reward medication in autoimmune disease) I would imagine that a lot more patients will be seeing progress. TNF-alpha inhibitors are basically the standard of care these days in many autoimmune diseases which are less severe than even moderate ME/CFS, and yet if I do a search on the forums I can't find a single person who has tried Humira or Remicade. I think CCD is planning to get some clinical trials started soon but I don't know where the funding will come from.

 

[el_squared]

Totally agree, although I can't express it as articulately in scientific terms like you. All the ME specialists are saying increasingly that this is a disease of inflammation. They're also seeing auto immune components. And yet, as you said, we aren't given access to these drugs. At least Plaquenil, I guess. Your rheumatolgist sounds awesome! The one I have seen off and on for fibromyalgia will try some things, but he definitely rejected the idea, set forth by Dr. Chheda, that I probably had sjogren's. He rejected that early Sjogren's test. Apparently some rheumalogy medical association had sent doctors a letter warning that the early Sjogren's test was bunk. And so he said he would not even order a lip biopsy to do further testing. Because I have tested at having zero NK cell function, Dr. Bonilla at Stanford referred me to an immunologist. I'm supposed to ask about some immune modulating drug. IL2, I think. But who knows what this immunologist will say. Dr. Chheda would like me to try IVIG, but she said it's very hard to get an insurance company to cover it. Trying LDN again tonight. Just .1mg. We'll see what happens. I seem to have bad reactions to everything. Oh and about Remicade, my friend with Crohn's has taken that over the years. She is in her mid 50s now and seems to be doing really well. She looks great.

 

[crypt0cu1t]

Are you taking Plaquenil? Did this happen to you or is this a hypothetical scenario? It's my understanding that any autoimmune disease is partially T cell mediated. Antibodies bind to antigens for CD4 T cells to then come in and attack the cells, no? It seems like there is evidence for clonal expansion in a lot of these disease states, and that is a T cell phenomenon. Sjogren's has many different symptoms that (probably, correct me if I'm wrong) can't be entirely explained by dysfunctional B cells. Plaquenil works on TLR9 which, if up-regulated (I guess it must be in Lupus and RA) will bring it back to normal and reduce T cell activation this way. But if you only have a problem with, say, TLR4, then maybe Plaquenil wouldn't work. It's also just not a very strong drug.

Yes, this is exactly what happened to me. My illness follows a very distinct relapsing-remitting pattern. When I first got I'll, I would have severe flares that left me bedridden for about 3 weeks at a time then they would go away for about a week.

Now, about 2 months after starting plaquenil, I still have those severe flares, but they only last for about 3 days on average and I'm able to consistently work part time and function 65%-70% of normal.

Since I do have a few positive autoantibodies, it's obvious that I do have problems with B cells but I'm wondering if my high ESR/CRP could signify some sort of inflammatory T cell issue if that makes sense?

I am starting high dose IVIG next week (2g/kg) and I'm honestly thinking that it will slightly help but I feel that I may need to address T cell issues as well.

 

[used_to_race]

Yes, this is exactly what happened to me. When I first got I'll, I would have severe flares that left me bedridden for about 3 weeks at a time then they would go away for about a week.

Now, about 2 months after starting plaquenil, I still have those severe flares, but they only last for about 3 days on average and I'm able to consistently work part time and function 65%-70% of normal.

Since I do have a few positive autoantibodies, it's obvious that I do have problems with B cells but I'm wondering if my high ESR/CRP could signify some sort of inflammatory T cell issue if that makes sense?

I am starting high dose IVIG next week (2g/kg) and I'm honestly thinking that it will slightly help but I feel that I may need to address T cell issues as well.

Yeah I mean the CRP tends to increase with IL6 production and T cell activation. Mine was never abnormal. ESR I’m not sure, it seems like kind of an unreliable measure of very much tbh.

IVIG has unexplained beneficial effects on T cells as well, I can’t find the paper I was thinking of as I’m on my phone rn but here’s one showing it interferes with cytokine mediated T cell proliferation: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1782817/

I’ve also seen that it induces Tregs which would be nice as well. But this isn’t an IVIG thread and I suspect plaquenil could be doing similar things for you. It seems wild to me that more people on here have tried IVIG than sulfasalazine or azathioprine, which could be beneficial as well and cost about nothing. In fact more people have probably tried IVIG than plaquenil lmao

Did your doctor say why they want you to start IVIG before, say, 4-6 months on plaquenil? Presumably you have not seen the steady-state effects of the drug yet after only 2 months, and it seems to already be working quite a bit according to you. What else are you taking?

 

[crypt0cu1t]

Yeah I mean the CRP tends to increase with IL6 production and T cell activation. Mine was never abnormal. ESR I’m not sure, it seems like kind of an unreliable measure of very much tbh.

IVIG has unexplained beneficial effects on T cells as well, I can’t find the paper I was thinking of as I’m on my phone rn but here’s one showing it interferes with cytokine mediated T cell proliferation: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1782817/

I’ve also seen that it induces Tregs which would be nice as well. But this isn’t an IVIG thread and I suspect plaquenil could be doing similar things for you. It seems wild to me that more people on here have tried IVIG than sulfasalazine or azathioprine, which could be beneficial as well and cost about nothing. In fact more people have probably tried IVIG than plaquenil lmao

Did your doctor say why they want you to start IVIG before, say, 4-6 months on plaquenil? Presumably you have not seen the steady-state effects of the drug yet after only 2 months, and it seems to already be working quite a bit according to you. What else are you taking?

I have taken tons of things, antiiotics, antivirals antifungals, LDN, MCAS meds and much more but nothing has even come close to touching this except for plaquenil.

By no means has it cured me, but it's definitely stopped the progression and length of my flares.

 

[frozenborderline]

I have taken tons of things, antiiotics, antivirals antifungals, LDN, MCAS meds and much more but nothing has even come close to touching this except for plaquenil.

By no means has it cured me, but it's definitely stopped the progression and length of my flares.

Interesting, I was on plaquenil for awhile and didn't feel like it helped but I may try it again

 

[tokyo99]

Totally agree, although I can't express it as articulately in scientific terms like you. All the ME specialists are saying increasingly that this is a disease of inflammation. They're also seeing auto immune components. And yet, as you said, we aren't given access to these drugs. At least Plaquenil, I guess. Your rheumatolgist sounds awesome! The one I have seen off and on for fibromyalgia will try some things, but he definitely rejected the idea, set forth by Dr. Chheda, that I probably had sjogren's. He rejected that early Sjogren's test. Apparently some rheumalogy medical association had sent doctors a letter warning that the early Sjogren's test was bunk. And so he said he would not even order a lip biopsy to do further testing. Because I have tested at having zero NK cell function, Dr. Bonilla at Stanford referred me to an immunologist. I'm supposed to ask about some immune modulating drug. IL2, I think. But who knows what this immunologist will say. Dr. Chheda would like me to try IVIG, but she said it's very hard to get an insurance company to cover it. Trying LDN again tonight. Just .1mg. We'll see what happens. I seem to have bad reactions to everything. Oh and about Remicade, my friend with Crohn's has taken that over the years. She is in her mid 50s now and seems to be doing really well. She looks great.

Hi el, I have high positive ANA (2560) and have seen over 20 doctors incl rhematolgists and several specialists. Since all of my bloods tests incl inflammatory markers have been normal not one doctor has suggest I take plaquenil. You post has sparked my interest and I wondered if you started taking it and how it went? Corvid19 has sparked massive interest in the drug and I think other CFS members might have something to contribute too.

 

[el_squared]

Hi el, I have high positive ANA (2560) and have seen over 20 doctors incl rhematolgists and several specialists. Since all of my bloods tests incl inflammatory markers have been normal not one doctor has suggest I take plaquenil. You post has sparked my interest and I wondered if you started taking it and how it went? Corvid19 has sparked massive interest in the drug and I think other CFS members might have something to contribute too.

Hi, A year or two ago I tried Plaquenil briefly but it made my pain worse. I didn't really stick with it, though -- maybe it would have helped if I took it longer. I have talked to other patients of the Stanford CFS clinic who have taken it and for some it helps. As far as I know the Stanford CFS clinic is prescribing it, but they are more keen on other medications for CFS like Abilify.