plaquenil for me/cfs -- work for anybody?

[el_squared]

Hi,

The Stanford CFS clinic recently prescribed me with plaquenil, after I responded adversely to several antivirals.

I don't test for high inflammatory markers like ANA, but I guess the clinic doctors think this drug might have anti inflammatory and antiviral properties. I have pain and muscle stiffness (50 going on 90), but weakness and crushing fatigue are my biggest issues. And feeling like I have a never-ending flu.

I would love to hear if it has helped anyone for ME/CFS, not just Lupus or Sjogrens.

thanks,
Laura

 

[Thinktank]

I have been prescribed plaquenil as a biofilm-buster for lyme, which was a misdiagnosis by the way.
I experienced a profound anti-inflammatory effect from 200mg hydroxychloroquine. I had to stop using it though because too much was going on at that moment, too many meds that caused a flareup of IBD.
I really want to try it again though.

 

[el_squared]

I have been prescribed plaquenil as a biofilm-buster for lyme, which was a misdiagnosis by the way.
I experienced a profound anti-inflammatory effect from 200mg hydroxychloroquine. I had to stop using it though because too much was going on at that moment, too many meds that caused a flareup of IBD.
I really want to try it again though.

Yeah I was diagnosed with Lyme but not sure if I have it. I'm not treating for it as the most recent tests were negative. That's good you had a positive reaction to Plaquenil. I am worried about the digestive effects. I definitely have bad IBS-C. In addition to SIBO and motility issues. The doc first prescribed Arava, but that also caused gut problems. Ugh, there's always a downside!

 

[Rebeccare]

I was prescribed plaquenil back when I first got sick about 10 years ago, partly because the doctors thought there was a chance that I had lupus. For the first month that I was on it I was pretty sick--low-grade fevers, terrible sore throat, chills, muscle pain, weight loss, etc. The doctors couldn't figure out whether I just got a terrible cold or if I was reacting to the plaquenil, so they took me off it. A few weeks later I restarted the plaquenil, and had no side effects after that. I was on it for about a year and didn't experience any improvement, but after that first month I didn't experience any negative effects either.

 

[el_squared]

I was prescribed plaquenil back when I first got sick about 10 years ago, partly because the doctors thought there was a chance that I had lupus. For the first month that I was on it I was pretty sick--low-grade fevers, terrible sore throat, chills, muscle pain, weight loss, etc. The doctors couldn't figure out whether I just got a terrible cold or if I was reacting to the plaquenil, so they took me off it. A few weeks later I restarted the plaquenil, and had no side effects after that. I was on it for about a year and didn't experience any improvement, but after that first month I didn't experience any negative effects either.

No improvement with a chance of damaging our eyes -- not very encouraging!

 

[Thinktank]

No improvement with a chance of damaging our eyes -- not very encouraging!

It's a minor chance but for someone with lupus or RA plaquenil can be a lifesaver, it's a very well tolerated medicine and some have been on it for 25+ years!
An eye-exam is necessary every 6 months.

 

[el_squared]

Yes, true. As I said, I have no inflammatory markers that suggest those diseases, although one doc suspects sjogrens. Would love to hear if it has helped an ME/CFS patient with the fundamental weakness and fatigue.

 

[Pisgah]

Hi,

The Stanford CFS clinic recently prescribed me with plaquenil, after I responded adversely to several antivirals.

I don't test for high inflammatory markers like ANA, but I guess the clinic doctors think this drug might have anti inflammatory and antiviral properties. I have pain and muscle stiffness (50 going on 90), but weakness and crushing fatigue are my biggest issues. And feeling like I have a never-ending flu.

I would love to hear if it has helped anyone for ME/CFS, not just Lupus or Sjogrens.

thanks,
Laura

Hi Laura. I have been taking Plaquenil 200mg twice daily for 18 months and have found it to be helpful for my ME. Like you I have never been positive on ANA panels, but my SED rates are often high. The most significant symptoms for me were(and still are) crushing fatigue, significant pain and muscle stiffness and the never ending flu feeling with frequent neck lymph swelling, cognitive issues, muscle weakness and intermittent IBS (along with a bunch of episodic/occasional other weird things that can happen to those of us with this illness, e.g. dizziness, staggering, etc.).

I was prescribed Plaquenil for Granuloma Annulare (GA), an autoimmune skin condition (similar to discoid lupus) which presented itself on my forehead/cheeks 22 months ago. It basically looked like an octopus and her tentacles had partied and sucked on my face for a week. Fortunately it was not painful and supposedly there are no other symptoms with the condition. However around the same time, I had begun feeling much worse, the above ME symptoms were heightened from moderate to the top end of severe ME. This lasted about 6 months (had it continued I would have had to go into assisted living or jump down the rabbit hole). The GA was diagnosed and I started the Plaquenil...initially 200mg a day for a month or so and then to the 2x a day. Only side effect was a little bit of passing nausea here and there for the first 1-2 months, otherwise no problem. I do see the ophthalmologist ever 6 mo., etc. but it is relatively rare for that side effect to occur.

The plaquenil has definitely helped me and brought me back to moderate ME but the effect is somewhat confounded by my starting taking a special Omega oil supplement in November...so I cant really tell which caused what in some of the additional improvements. I am still moderate ME, primarily because of fatigue and stamina, and I still feel like I have a slow progressive muscle weakening. But my flu..ish symtoms and lymph nodes swelling occur seldom now, and the pain, stiffness and feelings of overall inflammation has lessened significantly.

Please forgive the long response but I felt it necessary to give you some context from which you could hopefully extract something of value for yourself. Gloria

 

[el_squared]

Hi Laura. I have been taking Plaquenil 200mg twice daily for 18 months and have found it to be helpful for my ME. Like you I have never been positive on ANA panels, but my SED rates are often high. The most significant symptoms for me were(and still are) crushing fatigue, significant pain and muscle stiffness and the never ending flu feeling with frequent neck lymph swelling, cognitive issues, muscle weakness and intermittent IBS (along with a bunch of episodic/occasional other weird things that can happen to those of us with this illness, e.g. dizziness, staggering, etc.).

I was prescribed Plaquenil for Granuloma Annulare (GA), an autoimmune skin condition (similar to discoid lupus) which presented itself on my forehead/cheeks 22 months ago. It basically looked like an octopus and her tentacles had partied and sucked on my face for a week. Fortunately it was not painful and supposedly there are no other symptoms with the condition. However around the same time, I had begun feeling much worse, the above ME symptoms were heightened from moderate to the top end of severe ME. This lasted about 6 months (had it continued I would have had to go into assisted living or jump down the rabbit hole). The GA was diagnosed and I started the Plaquenil...initially 200mg a day for a month or so and then to the 2x a day. Only side effect was a little bit of passing nausea here and there for the first 1-2 months, otherwise no problem. I do see the ophthalmologist ever 6 mo., etc. but it is relatively rare for that side effect to occur.

The plaquenil has definitely helped me and brought me back to moderate ME but the effect is somewhat confounded by my starting taking a special Omega oil supplement in November...so I cant really tell which caused what in some of the additional improvements. I am still moderate ME, primarily because of fatigue and stamina, and I still feel like I have a slow progressive muscle weakening. But my flu..ish symtoms and lymph nodes swelling occur seldom now, and the pain, stiffness and feelings of overall inflammation has lessened significantly.

Please forgive the long response but I felt it necessary to give you some context from which you could hopefully extract something of value for yourself. Gloria

Thank you so much for responding Gloria. Good to hear that you have improved. Your ME issues sound very similar to mine, except I have not developed GA, which I had never heard of. Sounds like your stomach has tolerated it, which is good. I took my second dose of it today, just 100mg. After a few hours my fatigue is lessened but my mood is very bad, but that could be anything. I'll see what happens. Thanks for weighing in!

 

[el_squared]

Hi Laura. I have been taking Plaquenil 200mg twice daily for 18 months and have found it to be helpful for my ME. Like you I have never been positive on ANA panels, but my SED rates are often high. The most significant symptoms for me were(and still are) crushing fatigue, significant pain and muscle stiffness and the never ending flu feeling with frequent neck lymph swelling, cognitive issues, muscle weakness and intermittent IBS (along with a bunch of episodic/occasional other weird things that can happen to those of us with this illness, e.g. dizziness, staggering, etc.).

I was prescribed Plaquenil for Granuloma Annulare (GA), an autoimmune skin condition (similar to discoid lupus) which presented itself on my forehead/cheeks 22 months ago. It basically looked like an octopus and her tentacles had partied and sucked on my face for a week. Fortunately it was not painful and supposedly there are no other symptoms with the condition. However around the same time, I had begun feeling much worse, the above ME symptoms were heightened from moderate to the top end of severe ME. This lasted about 6 months (had it continued I would have had to go into assisted living or jump down the rabbit hole). The GA was diagnosed and I started the Plaquenil...initially 200mg a day for a month or so and then to the 2x a day. Only side effect was a little bit of passing nausea here and there for the first 1-2 months, otherwise no problem. I do see the ophthalmologist ever 6 mo., etc. but it is relatively rare for that side effect to occur.

The plaquenil has definitely helped me and brought me back to moderate ME but the effect is somewhat confounded by my starting taking a special Omega oil supplement in November...so I cant really tell which caused what in some of the additional improvements. I am still moderate ME, primarily because of fatigue and stamina, and I still feel like I have a slow progressive muscle weakening. But my flu..ish symtoms and lymph nodes swelling occur seldom now, and the pain, stiffness and feelings of overall inflammation has lessened significantly.

Please forgive the long response but I felt it necessary to give you some context from which you could hopefully extract something of value for yourself. Gloria

Oh, also, what is the Omega supplement you're taking?

 

[Pisgah]

Thank you so much for responding Gloria. Good to hear that you have improved. Your ME issues sound very similar to mine, except I have not developed GA, which I had never heard of. Sounds like your stomach has tolerated it, which is good. I took my second dose of it today, just 100mg. After a few hours my fatigue is lessened but my mood is very bad, but that could be anything. I'll see what happens. Thanks for weighing in!

FYI- I was told that the Plaquenil could take up to three months before you could tell what help it could or would not bring so it may take a while to see if it helps if you tolerate it okay.

I have been using Omega Cure (learned about it on PR from someone) and do believe it has helped reduce the overall feeling of inflammation and therefore reduced pain and other symptoms.

 

[Diwi9]

Hi @el_squared - I recently started on Plaquenil after testing high on an Early Sjogren's Panel and having some inflammatory markers. It has made a big difference for me in terms of reducing muscle/joint/connective tissue pain. I did not realize how chronic and intense my pain was until I began Plaquenil. I had also recently developed an immediate worsening of fatigue after any activity (fast-onset fatigue vs. PEM). The Plaquenil seems to have improved this as my daily stamina has improved (at least for now!). If you have autoimmune markers, it might be worth a trial. FWIW - I did not have to wait weeks or months to notice benefits. Recent research is showing an overlap between Sjogren's and POTS, so Plaquenil may be helpful to this subgroup?

 

[mattie]

4 months plaquenil did absolutely nothing for me.

 

[junkcrap50]

I am taking it for autoimmune prevention as I have many (nearly all) autoantibodies that the Cyrex autoimmune panel tests. These autoantibodies can exist prior to full blown autoimmune disease, which can take up to 10+ years to be realized with symptoms. So I'm hoping to delay the inevitable before the disease pathology sets in.

When I started plaquenil, however, I did notice a huge improvement temporarily. I felt like all my inflammation was gone. I had more energy, was motivated, and felt great. This lasted for approximately 2-3 weeks. Though, I overexerted my self feeling so great and had a major crash. I got exposed to mold and chemicals (VOCs) when I went on a cleaning binge, which, plus exertion caused my crash. I eventually recovered from the crash, but I now notice nothing from the plaquenil. I'm still taking it for autoimmune prevention, but it does nothing for me currently.

 

[el_squared]

Hi @el_squared - I recently started on Plaquenil after testing high on an Early Sjogren's Panel and having some inflammatory markers. It has made a big difference for me in terms of reducing muscle/joint/connective tissue pain. I did not realize how chronic and intense my pain was until I began Plaquenil. I had also recently developed an immediate worsening of fatigue after any activity (fast-onset fatigue vs. PEM). The Plaquenil seems to have improved this as my daily stamina has improved (at least for now!). If you have autoimmune markers, it might be worth a trial. FWIW - I did not have to wait weeks or months to notice benefits. Recent research is showing an overlap between Sjogren's and POTS, so Plaquenil may be helpful to this subgroup?

Thank you. And doctor did recently diagnose me with POTS.

 

[el_squared]

Thank you. And doctor did recently diagnose me with POTS.

And I also tested positive on the Quest Early Sjogren's panel. Although I don't think my insurance-covered docs will recognize it.

 

[rel8ted]

No improvement with a chance of damaging our eyes -- not very encouraging!

The official statistic my eye doc gave me this week was: after being on Plaquenil for 10 years, my odds of retinal damage are 2%. I'll keep the very mild improvement at that rate. The eye docs that I have worked with all said they had never seen a real live patient with damage due to Plaquenil, if that makes you feel any better. I think it sounds scary because it's eyesight, and it would be scary if you were the 2%.

Also, if you have SS, they are likely going to hit you with an RX for Plaquenil again. It's used to reduce inflammation/stiffness/prevent further joint damage in disease in that family - kind of a first line if defense for rheumatologists. If you take it, just be sure you have an ophthalmologist who is on board with a thorough retinal exam yearly, no exception.

 

[junkcrap50]

The official statistic my eye doc gave me this week was: after being on Plaquenil for 10 years, my odds of retinal damage are 2%. I'll keep the very mild improvement at that rate. The eye docs that I have worked with all said they had never seen a real live patient with damage due to Plaquenil, if that makes you feel any better. I think it sounds scary because it's eyesight, and it would be scary if you were the 2%.

Also, if you have SS, they are likely going to hit you with an RX for Plaquenil again. It's used to reduce inflammation/stiffness/prevent further joint damage in disease in that family - kind of a first line if defense for rheumatologists. If you take it, just be sure you have an ophthalmologist who is on board with a thorough retinal exam yearly, no exception.

My eye doc said the same thing. He said I probably didn't even need to have come it to get my eyes checked or at least not every 6 months.

 

[used_to_race]

@el_squared Have you been taking Plaquenil? Has anyone else here continued taking it? @Diwi9 ?

My complete protocol recently has been 3 things: Plaquenil (400mg daily since beginning of August - 2 months now), mHBOT (~6 days a week, since May-ish), Megasporebiotic (2 capsules/day, since June). My symptoms in, say, April, were:

• Mild/Moderate Fatigue
• Sore Throat, constant
• POTS-like symptoms/dysautonomia, mild
  
• GI symptoms, moderate (frequent diarrhea, hemorrhoids, occasional bleeding, bloating, perianal itching and pain, stomach pain), perceived sensitivity to several foods.
  
• Headaches
• Runny nose
• Lymphadenopathy
• Occasional weird blotchy rashes

When I started the probiotic I definitely noticed a positive change in my energy levels, dysautonomia, and GI symptoms, but it was very inconsistent. For a while I couldn't tell if the HBOT was doing anything. As I listed above, I started the Plaquenil 2 months ago (my ME/CFS doc prescribed 200mg but my rheumatologist said he would rather just see me on 400mg). Since about a month ago, I have been noticing improvements in all my symptoms. At baseline I was working around 30 hours a week and feeling miserable (much better than many people on here, but still an absolute hell). Most weekends I would just do some chores and nap, no energy to hang out with friends or anything like that. In the past few weeks I have been working 40 hours a week with relative ease, playing organized and pickup soccer 2-3 times per week (my team is pretty good as well so it's not exactly casual), and going on short hikes and bike rides with friends. My symptoms currently:

• Mild fatigue
• Sore throat, constant
• POTS/dysautonomia GONE
• GI symptoms much less frequent, less severe, and flares last hours rather than days. Perceived food sensitivities gone, except for coffee.
• Headaches GONE
• Runny nose less frequent but still there
• Rashes GONE
  
• Lymphadenopathy

So as you can see it is a big improvement. I would say I was on the border between mild and moderate before, and currently I am firmly in the mild category. Definitely not remission but pretty good. I haven't done HBOT for 8 days now, and I plan to give it another 3 weeks before I say for sure that it's a non-factor for me. At this point I'm about 75% sure the Plaquenil is helping, 50% sure the probiotics are helping, and 20% sure the HBOT is helping. So essentially I am as confident as I can be with the anecdotal information available to me that the Plaquenil is the main factor.

 

[el_squared]

@el_squared Have you been taking Plaquenil? Has anyone else here continued taking it? @Diwi9 ?

My complete protocol recently has been 3 things: Plaquenil (400mg daily since beginning of August - 2 months now), mHBOT (~6 days a week, since May-ish), Megasporebiotic (2 capsules/day, since June). My symptoms in, say, April, were:

• Mild/Moderate Fatigue
• Sore Throat, constant
• POTS-like symptoms/dysautonomia, mild
  
• GI symptoms, moderate (frequent diarrhea, hemorrhoids, occasional bleeding, bloating, perianal itching and pain, stomach pain), perceived sensitivity to several foods.
  
• Headaches
• Runny nose
• Lymphadenopathy
• Occasional weird blotchy rashes

When I started the probiotic I definitely noticed a positive change in my energy levels, dysautonomia, and GI symptoms, but it was very inconsistent. For a while I couldn't tell if the HBOT was doing anything. As I listed above, I started the Plaquenil 2 months ago (my ME/CFS doc prescribed 200mg but my rheumatologist said he would rather just see me on 400mg). Since about a month ago, I have been noticing improvements in all my symptoms. At baseline I was working around 30 hours a week and feeling miserable (much better than many people on here, but still an absolute hell). Most weekends I would just do some chores and nap, no energy to hang out with friends or anything like that. In the past few weeks I have been working 40 hours a week with relative ease, playing organized and pickup soccer 2-3 times per week (my team is pretty good as well so it's not exactly casual), and going on short hikes and bike rides with friends. My symptoms currently:

• Mild fatigue
• Sore throat, constant
• POTS/dysautonomia GONE
• GI symptoms much less frequent, less severe, and flares last hours rather than days. Perceived food sensitivities gone, except for coffee.
• Headaches GONE
• Runny nose less frequent but still there
• Rashes GONE
  
• Lymphadenopathy

So as you can see it is a big improvement. I would say I was on the border between mild and moderate before, and currently I am firmly in the mild category. Definitely not remission but pretty good. I haven't done HBOT for 8 days now, and I plan to give it another 3 weeks before I say for sure that it's a non-factor for me. At this point I'm about 75% sure the Plaquenil is helping, 50% sure the probiotics are helping, and 20% sure the HBOT is helping. So essentially I am as confident as I can be with the anecdotal information available to me that the Plaquenil is the main factor.

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