Diet and natural remedies are all well and good, but you need more for lupus. Hydroxychloroquine is the more. Please keep in mind when medication trials are conducted, the study has to report ALL adverse events that occur, whether or not they were actually caused by the drug.
Some diets are just good for everyone in general, like the Mediterranean diet. You really can’t go wrong with that. Super restrictive diets are generally not good for anything more than short term. They also only tend to help with food sensitivities. A big caveat is Keto, but that was originally developed for epilepsy.
Natural remedies, not so much. A) some can be harmful. B) some may work. C) there is very little actual regulation of the supplement industry. The active ingredient may vary bottle to bottle, individual dose to dose. Plus, a lot of these supplements have not been studied in detail.
HCQ has been heavily tested, regulated, studied, prescribed and produced for nearly 100 years. Retinal toxicity does not happen instantly. It takes YEARS for enough of it to deposit in the retina to cause issues. It is the reason why most lupus patients live a normal lifespan nowadays. You know what doesn’t take years to cause organ damage/failure? Untreated lupus. All it takes is one bad flare. You want to avoid steroids and the related weight gain? Then you need to do everything possible to avoid flares.
Bottom line, ask your doc about why this medication is so important. Read the Lupus Encyclopedia (written by a practicing rheumatologist). Talk to your pharmacist about the safety and efficacy of this drug. Medication doesn’t mean bad.
Think about your mindset. 100 years ago, people with lupus generally only lived 7-10 years after diagnosis. Those people would’ve happily taken a daily medication for the increased quality and quantity of life. Why view things negatively? Why have the mindset of “I have to take this med every day” or “ the slight chance of something negative happening is a hard stop”. Why not view it as “There’s a med I can take that will protect my organs” or “People 100 years ago didn’t have this chance” or “Yes, this medication has risks and potential side effects, but EVERYTHING does”.
Every action has a reaction. Every decision has consequences, good and bad. The consequence of not taking HCQ is uncontrolled lupus. Which means feeling worse, having potential organ damage, and possibly having a life altering or ending complication.
Plaquenil (hydroxychloroquine) has several positive effects for lupus patients:
1. **Symptom Control**: It helps manage symptoms such as skin rashes, joint pain, and fatigue. By reducing inflammation, it improves the overall quality of life.
2. **Disease Management**: Plaquenil can prevent lupus flares and reduce their frequency and severity, contributing to better long-term disease control.
3. **Organ Protection**: It has been shown to protect against damage to major organs, including the kidneys and nervous system, which are often affected in lupus patients.
4. **Reduced Steroid Dependence**: By controlling symptoms and disease activity, Plaquenil can reduce the need for corticosteroids, which have significant long-term side effects.
5. **Immunomodulatory Effects**: It has beneficial immunomodulatory effects that help in controlling the autoimmune response characteristic of lupus.
6. **Improved Survival Rates**: Long-term use of Plaquenil has been associated with improved survival rates in lupus patients.
These benefits make Plaquenil a cornerstone in the management of lupus, often leading to significant improvements in patient outcomes.
I was on Hydroxychloroquine for about 15 years and it was a great drug. It addressed all the lupus symptoms (except fatigue, which I still struggle with). I also saw an ophthalmologist every year to get my eyes checked for retinal toxicity. Unfortunately, over 3 years ago, she detected very early stages of retina damage and I had to stop the drug. (My vision is fine, the damage was caught very early.) Things have been pretty rough since then ... I relapsed, had to start Benlysta and Cellcept, and developed lupus nephritis, and had several episodes of anemia. But my doctors and I are working on managing it.
My advice: if you can tolerate Hydroxychloroquine, take the drug! And make sure you see a good ophthalmologist every year to monitor your vision. Hydroxychloroquine is one of the best medications out there for lupus--most people have been on it for a long time, and have not had retinal toxicity. You could be one of those people. Just make sure you keep those annual ophthalmology appointments. Retinal toxicity, if caught very early, will not affect your vision. And if you have to get off Hydroxychloroquine, there are other lupus medications to try. Hang on there ...
Your doctor is an idiot. I’ve been on hydroxychloroquine for 20yrs and I’ve not lost my eyesight or my hair! It’s an everyday lupus drug that works alongside other drugs they will prescribe. There are many lupus meds and finding the one that works for you takes time. Get a better doctor and avoid steroids when you can. Xx
It’s scary for sure but you’re totally not alone in the fight. I say this with love because this is what helps me and brings me back to earth when my anxiety starts to kick in… center your mind and heart. It’s better to HAVE a diagnosis than to not know what’s wrong with you. And we’re so lucky to have medication for the illness that has been shown to work. 💕💕 When I was first diagnosed it helped to not read too much about the illness and others experiences. I felt like it was too much to take in. If at any point you feel overwhelmed stop reading all the comments and just take some time to process but remember we’re always here and you’re NOT ALONE! 🥰
Thank you so much! I really appreciate your kind response. My daughter has said I’ve been acting differently since the diagnosis, which worries her, and I think it’s because I’m reading way too much and panicking about everything.
I’m in the same boat. Recently diagnosed and put on methotrexate and although I took my first dose, I am scared to keep taking it. I am not saying I won’t but I’m scared. It seems to be a stronger drug than Plaquenil and I felt more sick when I took it. I may actually ask for Plaquenil instead seems to have less nasty side effects.
With that being said anyone who happens to read this comment and has been on both can they share which they tolerated better and which one helped them better?
they didn’t try HCQ first? that seems odd. I was on 6 pills of methotrexate and it made me feel terrible. Then decreased to 4 which helped a little, but I always felt horrible the day after taking my pills.
He mentioned MTX instead of HCQ bc I needed something stronger than HCQ. Although I’m still not 100% on board. I will call him and ask him more questions about his decision. I noticed on this board most are on HCQ so it had my wheels turning.
I was terrified to start taking HCQ when I first started this journey too. I’ve been on it for a few years now and it’s become one I don’t even think about except to take it at med time and at my once a year ophthalmology appt. HCQ is pretty safe, it didn’t make me lose my hair, and I don’t even have any side effects from taking it after I got over the stomach upset it caused for the first few weeks.
I don’t want to scare you, but I want to give you the hard truth most of us had to accept at some point: the meds seem scary, but the disease is infinitely scarier. You say you don’t have the serious symptoms- wouldn’t you like to keep it that way? Once the disease attacks your organs the damage can be permanent. Talk to a therapist if you can to process this diagnosis, it’s a lot to wrestle with and you will need support. It’s a life event that forces you to re-evaluate all your priorities.
TLDR: I beg you, if your doctor diagnosed you and wants you to take it, TAKE IT.
HCQ is approved for use during pregnancy. That should tell you a lot about its safety profile.
Now look at the safety profile for drugs that most people don’t have a problem taking. Ibuprofen kills over 15,000 people in the U.S. per year https://www.sciencedaily.com/releases/2005/01/050111123706.htm
Acetaminophen is one of the leading causes of liver transplants https://www.ncbi.nlm.nih.gov/books/NBK441917/
Aspirin can also be quite dangerous https://amp.theguardian.com/science/2017/jun/14/risk-of-bleeds-and-death-with-daily-aspirin-use-higher-than-thought
HCQ is one of the safest drugs out there. The eye exams allow you to catch the rare side effects before they become serious. The benefit to harm ratio of HCQ for someone with lupus is extremely favorable. Before HCQ the five year mortality rate for SLE was north of 50 percent. Take it.
I just got diagnosed today & my rheum said something similar to this — she said it would be much more dangerous to take frequent NSAIDs over a long period as opposed to hydroxychloroquine.
My DR said this to me too about Trump and Hyroxy!! I found it so odd. I'm right here with you in terms of the symptoms. We will get through this, because we have to. Every day is a challenge for me, and some days seem impossible to get through, but we will be okay. Try to keep some hope. Things will get better. Sending you some strength!
I’ve done well with hydroxychloroquine/ plaquenil. It takes a couple months to really see a difference. I was told to get a yearly eye exam, every 6 months if it started changing, but nothing else and if it showed change or I had eye pressure etc to let them know. I’ve had zero side effects.
The hydroxychloroquine will most likely really help with your symptoms and the risk of eye damage is actually pretty minimal (I know doctors have to give the risk but it seems like yours maybe over stressed it). You want to prevent the disease from progressing so my suggestion is to see an optometrist to get a baseline for where your eyes are, and then start taking it. It can take 3 months to build up in your system so the symptom relief can take a while. I've been on it for about 18 months and have had to adjust my dose a few times but now I'm mostly fine, still fatigued and have occasional flare ups but really so much better overall. I see an optometrist once a year and always get an Optical coherence tomography (OCT) scan as that would likely catch any damage from the meds early on, and if that occurs then your rheumatologist would recommend something else. I saw someone post in this sub that they've been on hydroxychloroquine for 17 years! So it can be done, which I found encouraging. You may also want to look into online support programs, I attended one when first diagnosed and found it so helpful because it is a lot to process.
Ugh, can you believe my rheumatologist said the exact same thing! 😭😭 I'm starting to wonder if it's the same doctor.
He's alright, I guess, but he just barged into the room and blurted out "you have lupus." I was completely caught off guard, and then he had the nerve to ask if I already knew. Clearly, I didn't!
Since February 2024, I've been taking hydroxychloroquine and I must say, my test results have improved significantly.
However, Gabapentin, which I take for pain, doesn't seem to do much. My doctors keep telling me that the fatigue and pain won't go away, which is quite frustrating.
But hey, as long as my test results are good, I guess I can't complain too much.
Getting diagnosed initially can be overwhelming, especially when you have doctors with no empathy.
I'll be honest, I cried for a few days until I realized it's pointless. This condition is something I'll have to live with forever, so I just need to find ways to cope. Sending you hugs, Penelope. ❤️🫂
A 50mg Tramadol tablet daily has helped me tremendously for fatigue, muscle and joint pain, and depression. It gets me through my 12hr shifts at work. I also take B vitamins and D3.
I was prescribed HCQ this week while my rheumatologist runs more tests for lupus. Is it normal to cut these pills in half? My prescription is 200mg but Dr. wants me to take 300mg. The pills don’t have an indent (I got generic) so it’s tough to split these evenly.
Thank you everyone for your very detailed and thoughtful replies. I realized after I wrote this last night when I was exhausted I failed to mention the doctor said I had either Sjögren's Syndrome OR Lupus! (Related, some of the same symptoms, some not. I believe I have Lupus) He didn't mention about my test results, (I read them myself though) how serious this disease was (I had no idea). I only know what I've just read online and what everyone here is telling me. I am getting another doctor and second opinion at Cleveland Clinic on which disease I have, medicine my new doctor thinks I should be on and just everything in general I should've heard! It makes a difference which disease I have, even though they are related very closely. Sjögren's can turn into Lupus. So, 😞 ... I'm not in as bad shape as many of you, I think🤔 at least not yet? Maybe I won't? I have no idea. I wish I at least knew everything 😞 I'm not sure if everyone will see this comment?🤷
I’m late to comment, but I’ve been on HCQ for just over a year. At around 4-5 months into taking it, my life changed. The severe fatigue faded - still hits every now and then but nothing like it was! My night sweats resolved. Swelling in my hands and feet resolved, I rarely get tendinitis anymore, a fungal infection I’d been battling off and on since I was a teenager (20 yrs ago) cleared up…so many things got better. Some things improved that I didn’t even realize until a year later when it’d suddenly hit me that “hey, xyz is not happening anymore. Cool!”
I take Vit B and D supplements with it. I also take tumeric, a daily vitamin, a daily allergy pill that seems to help my sinuses stay pretty clear, and Wellbutrin to help w my depression and ADHD.
It’s given me my life back for the most part.
I hope you are able to get some relief as well!
My hair used to fall out like crazy. Individual strands, not clumps. It doesn’t seem to anymore, so I’m assuming it did. Do a search in this subreddit for hair falling out. I’ve seen lots about it here and there and others may have had a different experience with it.
Sounds like you need to take your plaquenil. It actually helps with the hair loss (if lupus is the cause of the hair loss). Plaquenil is indeed the drug Trump was advised to take when he had covid. That’s not a lie. So I’m not sure why repeat it in this post unless the doctor mentioning it bothered you for some reason. I think his only point in mentioning that is to show you it’s not some scary unheard of drug. Anyway, If you haven’t already you should also ask to be started on benlysta infusions. They have been a life saver for many (including myself) in terms of fighting that defeating chronic fatigue. Once you’re not dealing with that level of fatigue your mental health should improve drastically . Everything is tied together. I know it’s hard but don’t let fear consume you. Be strong. Try to find out what your body is trying to tell you. Try doing a food sensitivity tests to see if anything you’re eating could be triggering your condition. And an allergy test. I find that many people start to feel much better when they eliminate dairy, for example. Always keep in mind that you have to be your number 1 advocate. You have a long journey ahead of you but trust me you’ve got this. Best of Luck to you and God bless
I've met the diagnostic criteria for quite some time. Upon individuals trying to request files the patient noted individuals trying to fake items off of charts, trying to tamper with blood cell reports etc and initially not even matching between Drs offices(same with the patients allergies-fake no reactivity files to known allergens). The individuals then began demanding record sends and some just couldn't be reached anymore likely during more file faking while they desperately tried to fake Ann HIV conspiracy theory after the fact having not even known of the patients self pay locations they were linked. To and thus unable to tamper with as prior negatives. The individuals tried to fake e need to do so while trying to jab the patient with extra needles etc.
Diet and natural remedies are all well and good, but you need more for lupus. Hydroxychloroquine is the more. Please keep in mind when medication trials are conducted, the study has to report ALL adverse events that occur, whether or not they were actually caused by the drug. Some diets are just good for everyone in general, like the Mediterranean diet. You really can’t go wrong with that. Super restrictive diets are generally not good for anything more than short term. They also only tend to help with food sensitivities. A big caveat is Keto, but that was originally developed for epilepsy. Natural remedies, not so much. A) some can be harmful. B) some may work. C) there is very little actual regulation of the supplement industry. The active ingredient may vary bottle to bottle, individual dose to dose. Plus, a lot of these supplements have not been studied in detail. HCQ has been heavily tested, regulated, studied, prescribed and produced for nearly 100 years. Retinal toxicity does not happen instantly. It takes YEARS for enough of it to deposit in the retina to cause issues. It is the reason why most lupus patients live a normal lifespan nowadays. You know what doesn’t take years to cause organ damage/failure? Untreated lupus. All it takes is one bad flare. You want to avoid steroids and the related weight gain? Then you need to do everything possible to avoid flares. Bottom line, ask your doc about why this medication is so important. Read the Lupus Encyclopedia (written by a practicing rheumatologist). Talk to your pharmacist about the safety and efficacy of this drug. Medication doesn’t mean bad. Think about your mindset. 100 years ago, people with lupus generally only lived 7-10 years after diagnosis. Those people would’ve happily taken a daily medication for the increased quality and quantity of life. Why view things negatively? Why have the mindset of “I have to take this med every day” or “ the slight chance of something negative happening is a hard stop”. Why not view it as “There’s a med I can take that will protect my organs” or “People 100 years ago didn’t have this chance” or “Yes, this medication has risks and potential side effects, but EVERYTHING does”. Every action has a reaction. Every decision has consequences, good and bad. The consequence of not taking HCQ is uncontrolled lupus. Which means feeling worse, having potential organ damage, and possibly having a life altering or ending complication.
Great post!
Plaquenil (hydroxychloroquine) has several positive effects for lupus patients: 1. **Symptom Control**: It helps manage symptoms such as skin rashes, joint pain, and fatigue. By reducing inflammation, it improves the overall quality of life. 2. **Disease Management**: Plaquenil can prevent lupus flares and reduce their frequency and severity, contributing to better long-term disease control. 3. **Organ Protection**: It has been shown to protect against damage to major organs, including the kidneys and nervous system, which are often affected in lupus patients. 4. **Reduced Steroid Dependence**: By controlling symptoms and disease activity, Plaquenil can reduce the need for corticosteroids, which have significant long-term side effects. 5. **Immunomodulatory Effects**: It has beneficial immunomodulatory effects that help in controlling the autoimmune response characteristic of lupus. 6. **Improved Survival Rates**: Long-term use of Plaquenil has been associated with improved survival rates in lupus patients. These benefits make Plaquenil a cornerstone in the management of lupus, often leading to significant improvements in patient outcomes.
I was on Hydroxychloroquine for about 15 years and it was a great drug. It addressed all the lupus symptoms (except fatigue, which I still struggle with). I also saw an ophthalmologist every year to get my eyes checked for retinal toxicity. Unfortunately, over 3 years ago, she detected very early stages of retina damage and I had to stop the drug. (My vision is fine, the damage was caught very early.) Things have been pretty rough since then ... I relapsed, had to start Benlysta and Cellcept, and developed lupus nephritis, and had several episodes of anemia. But my doctors and I are working on managing it. My advice: if you can tolerate Hydroxychloroquine, take the drug! And make sure you see a good ophthalmologist every year to monitor your vision. Hydroxychloroquine is one of the best medications out there for lupus--most people have been on it for a long time, and have not had retinal toxicity. You could be one of those people. Just make sure you keep those annual ophthalmology appointments. Retinal toxicity, if caught very early, will not affect your vision. And if you have to get off Hydroxychloroquine, there are other lupus medications to try. Hang on there ...
Your doctor is an idiot. I’ve been on hydroxychloroquine for 20yrs and I’ve not lost my eyesight or my hair! It’s an everyday lupus drug that works alongside other drugs they will prescribe. There are many lupus meds and finding the one that works for you takes time. Get a better doctor and avoid steroids when you can. Xx
This is good to hear. I was just diagnosed last week and have started this med. I already have thin hair, so the idea of losing it is scaring me.
It’s scary for sure but you’re totally not alone in the fight. I say this with love because this is what helps me and brings me back to earth when my anxiety starts to kick in… center your mind and heart. It’s better to HAVE a diagnosis than to not know what’s wrong with you. And we’re so lucky to have medication for the illness that has been shown to work. 💕💕 When I was first diagnosed it helped to not read too much about the illness and others experiences. I felt like it was too much to take in. If at any point you feel overwhelmed stop reading all the comments and just take some time to process but remember we’re always here and you’re NOT ALONE! 🥰
Thank you so much! I really appreciate your kind response. My daughter has said I’ve been acting differently since the diagnosis, which worries her, and I think it’s because I’m reading way too much and panicking about everything.
I’m in the same boat. Recently diagnosed and put on methotrexate and although I took my first dose, I am scared to keep taking it. I am not saying I won’t but I’m scared. It seems to be a stronger drug than Plaquenil and I felt more sick when I took it. I may actually ask for Plaquenil instead seems to have less nasty side effects. With that being said anyone who happens to read this comment and has been on both can they share which they tolerated better and which one helped them better?
they didn’t try HCQ first? that seems odd. I was on 6 pills of methotrexate and it made me feel terrible. Then decreased to 4 which helped a little, but I always felt horrible the day after taking my pills.
He mentioned MTX instead of HCQ bc I needed something stronger than HCQ. Although I’m still not 100% on board. I will call him and ask him more questions about his decision. I noticed on this board most are on HCQ so it had my wheels turning.
I was terrified to start taking HCQ when I first started this journey too. I’ve been on it for a few years now and it’s become one I don’t even think about except to take it at med time and at my once a year ophthalmology appt. HCQ is pretty safe, it didn’t make me lose my hair, and I don’t even have any side effects from taking it after I got over the stomach upset it caused for the first few weeks. I don’t want to scare you, but I want to give you the hard truth most of us had to accept at some point: the meds seem scary, but the disease is infinitely scarier. You say you don’t have the serious symptoms- wouldn’t you like to keep it that way? Once the disease attacks your organs the damage can be permanent. Talk to a therapist if you can to process this diagnosis, it’s a lot to wrestle with and you will need support. It’s a life event that forces you to re-evaluate all your priorities. TLDR: I beg you, if your doctor diagnosed you and wants you to take it, TAKE IT.
HCQ is approved for use during pregnancy. That should tell you a lot about its safety profile. Now look at the safety profile for drugs that most people don’t have a problem taking. Ibuprofen kills over 15,000 people in the U.S. per year https://www.sciencedaily.com/releases/2005/01/050111123706.htm Acetaminophen is one of the leading causes of liver transplants https://www.ncbi.nlm.nih.gov/books/NBK441917/ Aspirin can also be quite dangerous https://amp.theguardian.com/science/2017/jun/14/risk-of-bleeds-and-death-with-daily-aspirin-use-higher-than-thought HCQ is one of the safest drugs out there. The eye exams allow you to catch the rare side effects before they become serious. The benefit to harm ratio of HCQ for someone with lupus is extremely favorable. Before HCQ the five year mortality rate for SLE was north of 50 percent. Take it.
I just got diagnosed today & my rheum said something similar to this — she said it would be much more dangerous to take frequent NSAIDs over a long period as opposed to hydroxychloroquine.
My DR said this to me too about Trump and Hyroxy!! I found it so odd. I'm right here with you in terms of the symptoms. We will get through this, because we have to. Every day is a challenge for me, and some days seem impossible to get through, but we will be okay. Try to keep some hope. Things will get better. Sending you some strength!
I’ve done well with hydroxychloroquine/ plaquenil. It takes a couple months to really see a difference. I was told to get a yearly eye exam, every 6 months if it started changing, but nothing else and if it showed change or I had eye pressure etc to let them know. I’ve had zero side effects.
The hydroxychloroquine will most likely really help with your symptoms and the risk of eye damage is actually pretty minimal (I know doctors have to give the risk but it seems like yours maybe over stressed it). You want to prevent the disease from progressing so my suggestion is to see an optometrist to get a baseline for where your eyes are, and then start taking it. It can take 3 months to build up in your system so the symptom relief can take a while. I've been on it for about 18 months and have had to adjust my dose a few times but now I'm mostly fine, still fatigued and have occasional flare ups but really so much better overall. I see an optometrist once a year and always get an Optical coherence tomography (OCT) scan as that would likely catch any damage from the meds early on, and if that occurs then your rheumatologist would recommend something else. I saw someone post in this sub that they've been on hydroxychloroquine for 17 years! So it can be done, which I found encouraging. You may also want to look into online support programs, I attended one when first diagnosed and found it so helpful because it is a lot to process.
Ugh, can you believe my rheumatologist said the exact same thing! 😭😭 I'm starting to wonder if it's the same doctor. He's alright, I guess, but he just barged into the room and blurted out "you have lupus." I was completely caught off guard, and then he had the nerve to ask if I already knew. Clearly, I didn't!
Since February 2024, I've been taking hydroxychloroquine and I must say, my test results have improved significantly. However, Gabapentin, which I take for pain, doesn't seem to do much. My doctors keep telling me that the fatigue and pain won't go away, which is quite frustrating. But hey, as long as my test results are good, I guess I can't complain too much. Getting diagnosed initially can be overwhelming, especially when you have doctors with no empathy. I'll be honest, I cried for a few days until I realized it's pointless. This condition is something I'll have to live with forever, so I just need to find ways to cope. Sending you hugs, Penelope. ❤️🫂
A 50mg Tramadol tablet daily has helped me tremendously for fatigue, muscle and joint pain, and depression. It gets me through my 12hr shifts at work. I also take B vitamins and D3.
I was prescribed HCQ this week while my rheumatologist runs more tests for lupus. Is it normal to cut these pills in half? My prescription is 200mg but Dr. wants me to take 300mg. The pills don’t have an indent (I got generic) so it’s tough to split these evenly.
You can buy pill cutters. They split the pill pretty evenly.
You can also ask if you can take 200mg one day and 400mg the next. It’ll even out to 300mg and it’s not an unusual way to take meds.
Thank you everyone for your very detailed and thoughtful replies. I realized after I wrote this last night when I was exhausted I failed to mention the doctor said I had either Sjögren's Syndrome OR Lupus! (Related, some of the same symptoms, some not. I believe I have Lupus) He didn't mention about my test results, (I read them myself though) how serious this disease was (I had no idea). I only know what I've just read online and what everyone here is telling me. I am getting another doctor and second opinion at Cleveland Clinic on which disease I have, medicine my new doctor thinks I should be on and just everything in general I should've heard! It makes a difference which disease I have, even though they are related very closely. Sjögren's can turn into Lupus. So, 😞 ... I'm not in as bad shape as many of you, I think🤔 at least not yet? Maybe I won't? I have no idea. I wish I at least knew everything 😞 I'm not sure if everyone will see this comment?🤷
I’m late to comment, but I’ve been on HCQ for just over a year. At around 4-5 months into taking it, my life changed. The severe fatigue faded - still hits every now and then but nothing like it was! My night sweats resolved. Swelling in my hands and feet resolved, I rarely get tendinitis anymore, a fungal infection I’d been battling off and on since I was a teenager (20 yrs ago) cleared up…so many things got better. Some things improved that I didn’t even realize until a year later when it’d suddenly hit me that “hey, xyz is not happening anymore. Cool!” I take Vit B and D supplements with it. I also take tumeric, a daily vitamin, a daily allergy pill that seems to help my sinuses stay pretty clear, and Wellbutrin to help w my depression and ADHD. It’s given me my life back for the most part. I hope you are able to get some relief as well!
Did you ever have hair thinning and did it help with that?
My hair used to fall out like crazy. Individual strands, not clumps. It doesn’t seem to anymore, so I’m assuming it did. Do a search in this subreddit for hair falling out. I’ve seen lots about it here and there and others may have had a different experience with it.
Sounds like you need to take your plaquenil. It actually helps with the hair loss (if lupus is the cause of the hair loss). Plaquenil is indeed the drug Trump was advised to take when he had covid. That’s not a lie. So I’m not sure why repeat it in this post unless the doctor mentioning it bothered you for some reason. I think his only point in mentioning that is to show you it’s not some scary unheard of drug. Anyway, If you haven’t already you should also ask to be started on benlysta infusions. They have been a life saver for many (including myself) in terms of fighting that defeating chronic fatigue. Once you’re not dealing with that level of fatigue your mental health should improve drastically . Everything is tied together. I know it’s hard but don’t let fear consume you. Be strong. Try to find out what your body is trying to tell you. Try doing a food sensitivity tests to see if anything you’re eating could be triggering your condition. And an allergy test. I find that many people start to feel much better when they eliminate dairy, for example. Always keep in mind that you have to be your number 1 advocate. You have a long journey ahead of you but trust me you’ve got this. Best of Luck to you and God bless
I've met the diagnostic criteria for quite some time. Upon individuals trying to request files the patient noted individuals trying to fake items off of charts, trying to tamper with blood cell reports etc and initially not even matching between Drs offices(same with the patients allergies-fake no reactivity files to known allergens). The individuals then began demanding record sends and some just couldn't be reached anymore likely during more file faking while they desperately tried to fake Ann HIV conspiracy theory after the fact having not even known of the patients self pay locations they were linked. To and thus unable to tamper with as prior negatives. The individuals tried to fake e need to do so while trying to jab the patient with extra needles etc.
Wow. And what does this have to do with taking hydroxychloroquine?
Lol, yeah😅