The Lupus Forum banner
1 - 18 of 18 Posts

·
Registered
Joined
·
39 Posts
Discussion Starter · #1 ·
Got "officially" diagnosed today, even though my doctor believed strongly that I had it for a long time. The struggle was finding out if I had SLE or behcet's disease since so many of the symptoms of both diseases overlap. I have family history of both with multiple cases on different sides of the family, so the doctors were careful. After many other symptoms resembling lupus over time, repetitively positive anti-DSDNA / ANA-general tests, and my very fast strong positive response to plaquenil and having very mild to no symptoms (especially compared to before) afterwards with months and months of time, my doctor ended up diagnosing lupus. My blood tests are overall better too and resemble a clean bill of health, compared to before. Happy my liver enzymes and my glucose have returned to normal healthy levels. I feel great!

I'm a 25-year-old male, 5'6'', 145 pounds. I take plaquenil 200 mg / day, medical marijuana hash oil every day, Vitamin D3 5000 IU, a multivitamin, and powdered magnesium when needed for stress, constipation, and / or intestinal detoxification.

I don't think I have plaquenil side effects. If I do they are hardly noticeable.
 

·
Registered
Joined
·
40 Posts
I'm happy for you that you got a diagnosis. I think it is a confirmation of what one already knows, but now can stop second-guessing everything. I have another week until I see the R. doc and, hopefully, will get a diagnosis then.
 

·
Registered
Joined
·
39 Posts
Discussion Starter · #4 ·
Hi and welcome to the site. It is great to hear that you have responded so well to treatment, long may it continue! Make sure that you get a eye check every year whilst taking Plaquenil.

http://www.thelupussite.com/practical_information/living_with_lupus.html
I do every 6 months eye check. When I reach closer to 5 years on plaquenil I will go every 3 months - I will work more to pay for the extra visit out of pocket - I don't care about the money when it comes to my eyes. My eye doctor told me my vision and eyes had actually improved(?) on the last visit, and he changed my prescription to different glasses. That was after 3 or 4 months on the plaquenil. Hope my eyes stay in similar shape in the future!
 

·
Registered
Joined
·
18 Posts
From what I understand, most eye problems don't occur unless you are taking high doses (over 600mg per day) for a long time (5 years or more), but it never hurts to check and be keep an eye on it because everyone responds differently. I've been on high 400mg for several years, even occasionally going up to 600 for a few months. So far so good in terms of the eyes!
 

·
Registered
Joined
·
39 Posts
Discussion Starter · #6 ·
From what I understand, most eye problems don't occur unless you are taking high doses (over 600mg per day) for a long time (5 years or more), but it never hurts to check and be keep an eye on it because everyone responds differently. I've been on high 400mg for several years, even occasionally going up to 600 for a few months. So far so good in terms of the eyes!
It's always rare, but the possibility always exists. The fact there's any chance that it could damage my eyes is enough to keep me vigilant. While this is even more rare, there are cases of eye damage occurring within months of trying plaquenil. So I while I understand it is very rare especially in my circumstances, I'll still go above and beyond because there is a possible chance. I will admit I am above average with being cautious. :oops:
 

·
Registered
Joined
·
7 Posts
Got "officially" diagnosed today, even though my doctor believed strongly that I had it for a long time. The struggle was finding out if I had SLE or behcet's disease since so many of the symptoms of both diseases overlap. I have family history of both with multiple cases on different sides of the family, so the doctors were careful. After many other symptoms resembling lupus over time, repetitively positive anti-DSDNA / ANA-general tests, and my very fast strong positive response to plaquenil and having very mild to no symptoms (especially compared to before) afterwards with months and months of time, my doctor ended up diagnosing lupus. My blood tests are overall better too and resemble a clean bill of health, compared to before. Happy my liver enzymes and my glucose have returned to normal healthy levels. I feel great!

I'm a 25-year-old male, 5'6'', 145 pounds. I take plaquenil 200 mg / day, medical marijuana hash oil every day, Vitamin D3 5000 IU, a multivitamin, and powdered magnesium when needed for stress, constipation, and / or intestinal detoxification.

I don't think I have plaquenil side effects. If I do they are hardly noticeable.
Just an encouragement...I've been on 400mg of Plaquenil daily for almost 24 years - it's a lifesaver. I go to the eye doctor every 6 mo..never had any issues with the medication. My current opthamologist is not thrilled as he's never had a patient on Plaquenil for that long or that strength before. I get the impression he'd feel more comfortable if I were off it, but he can't find a reason to recommend that!!! Thank goodness. Plaquenil is the foundation of my treatment. Other things may be added or deleted, but Plaquenil stays onboard. The one time an internist insisted I take a "medication vacation" from it, the results were not good. So, I hope the very best for you and as much success as I've had with that medication.
 

·
Registered
Joined
·
39 Posts
Discussion Starter · #9 ·
I am pretty confident with my low dose and frequent eye checks. I also do my own things for my health that I believe assist the eyes, like increasing my vitamin A. I am happy to have such strong results at such a low dose. Im very satisfied with the medicine, despite my eye vigilance otherwise lol.
 

·
Registered
Joined
·
25 Posts
Got "officially" diagnosed today, even though my doctor believed strongly that I had it for a long time. The struggle was finding out if I had SLE or behcet's disease since so many of the symptoms of both diseases overlap. I have family history of both with multiple cases on different sides of the family, so the doctors were careful. After many other symptoms resembling lupus over time, repetitively positive anti-DSDNA / ANA-general tests, and my very fast strong positive response to plaquenil and having very mild to no symptoms (especially compared to before) afterwards with months and months of time, my doctor ended up diagnosing lupus. My blood tests are overall better too and resemble a clean bill of health, compared to before. Happy my liver enzymes and my glucose have returned to normal healthy levels. I feel great!

I'm a 25-year-old male, 5'6'', 145 pounds. I take plaquenil 200 mg / day, medical marijuana hash oil every day, Vitamin D3 5000 IU, a multivitamin, and powdered magnesium when needed for stress, constipation, and / or intestinal detoxification.

I don't think I have plaquenil side effects. If I do they are hardly noticeable.

Got "officially" diagnosed today, even though my doctor believed strongly that I had it for a long time. The struggle was finding out if I had SLE or behcet's disease since so many of the symptoms of both diseases overlap. I have family history of both with multiple cases on different sides of the family, so the doctors were careful. After many other symptoms resembling lupus over time, repetitively positive anti-DSDNA / ANA-general tests, and my very fast strong positive response to plaquenil and having very mild to no symptoms (especially compared to before) afterwards with months and months of time, my doctor ended up diagnosing lupus. My blood tests are overall better too and resemble a clean bill of health, compared to before. Happy my liver enzymes and my glucose have returned to normal healthy levels. I feel great!

I'm a 25-year-old male, 5'6'', 145 pounds. I take plaquenil 200 mg / day, medical marijuana hash oil every day, Vitamin D3 5000 IU, a multivitamin, and powdered magnesium when needed for stress, constipation, and / or intestinal detoxification.

I don't think I have plaquenil side effects. If I do they are hardly noticeable.

I hope that this post finds you well. When I was diagnosed with SLE, it was a borderline diagnosis. I wouldn't qualify as a clinical trial case for SLE studies, but two separate specialists agreed that there was enough scientific evidence for the diagnosis. I didn't know of anyone in my family who suffered from it. But two days ago, I convinced my mother to get blood testing done, and she has it. So, I'm glad that you were able to discover what you were dealing with.

I've learned that nutrition is extremely important regarding managing SLE. Milk consumption has a very negative impact on my body. I also was skeptical about what I read about sun exposure. I'm a believer, now. I experienced the negative effects of "sun tanning" without proper sun screen. Don't do it.

Does the hash oil really help? Also, how effective has the powdered magnesium been for you?
 

·
Registered
Joined
·
39 Posts
Discussion Starter · #11 · (Edited)
I hope that this post finds you well. When I was diagnosed with SLE, it was a borderline diagnosis. I wouldn't qualify as a clinical trial case for SLE studies, but two separate specialists agreed that there was enough scientific evidence for the diagnosis. I didn't know of anyone in my family who suffered from it. But two days ago, I convinced my mother to get blood testing done, and she has it. So, I'm glad that you were able to discover what you were dealing with.

I've learned that nutrition is extremely important regarding managing SLE. Milk consumption has a very negative impact on my body. I also was skeptical about what I read about sun exposure. I'm a believer, now. I experienced the negative effects of "sun tanning" without proper sun screen. Don't do it.

Does the hash oil really help? Also, how effective has the powdered magnesium been for you?
My mother has lupus too, I also ordered her to get tested. :cry:

It makes me emotional so I hesitated to share. How bizarre that you have the same case! Very strange you say this! :eek:I suspected my mother after I got semi-diagnosed when my doctor asked me if anyone else I knew in my family who may have lupus.

My mother almost died of lung complications when she was a younger girl from "pneumonia", she suffered from "bronchitis" and "breathing problems" a lot, she had to have in vitro fertilization to have me as a baby, she had miscarriages (I was very lucky, I was also born 2 weeks late), she had joint problems that doctors could not fix that they were certain they could after operations, she had a period of severe anemia, she avoided the sun because she would "get these strange red rashes on her arms", and finally she was going to the hospital on and off last summer for what she and doctors had believed she had a silent heart attack. I begged her to stop her denial and get tested. Her doctors were all shocked when the results came back for lupus. The pictures of "damage" around her heart x-rays had "vanished" (doctors believe inflammation). She wished she listened to me earlier to get tested, it took her a long time to get stable after that.

The hash oil absolutely helps (at least for me). I've also got sick from cheap, poorly processed, or "contaminated hash oil". Be very selective with your sources if you can't grow it / make it yourself (especially if your immune system is strongly suppressed). I have moved onto making it myself. I get the best results from eating it, and I also vaporize, or "dab" it for times when I want less of it in my system.


My rheumatologist says he has hundreds of lupus patients on medical marijuana here in Southern California and he says they seem to do great with it and he has no problem with my use.

I tried red light therapy at a tanning booth, that was supposedly without UV rays, and still flared up from it. I tried a regular tanning booth once on purpose with actual UV rays and unquestionably got symptoms. I have been only been drinking almond / rice "milk", for many years. Don't react too good to too much dairy either.
 

·
Registered
Joined
·
25 Posts
My mother has lupus too, I also ordered her to get tested. :cry:

It makes me emotional so I hesitated to share. How bizarre that you have the same case! Very strange you say this! :eek:I suspected my mother after I got semi-diagnosed when my doctor asked me if anyone else I knew in my family who may have lupus.

My mother almost died of lung complications when she was a younger girl from "pneumonia", she suffered from "bronchitis" and "breathing problems" a lot, she had to have in vitro fertilization to have me as a baby, she had miscarriages (I was very lucky, I was also born 2 weeks late), she had joint problems that doctors could not fix that they were certain they could after operations, she had a period of severe anemia, she avoided the sun because she would "get these strange red rashes on her arms", and finally she was going to the hospital on and off last summer for what she and doctors had believed she had a silent heart attack. I begged her to stop her denial and get tested. Her doctors were all shocked when the results came back for lupus. The pictures of "damage" around her heart x-rays had "vanished" (doctors believe inflammation). She wished she listened to me earlier to get tested, it took her a long time to get stable after that.

The hash oil absolutely helps (at least for me). I've also got sick from cheap, poorly processed, or "contaminated hash oil". Be very selective with your sources if you can't grow it / make it yourself (especially if your immune system is strongly suppressed). I have moved onto making it myself. I get the best results from eating it, and I also vaporize, or "dab" it for times when I want less of it in my system.


My rheumatologist says he has hundreds of lupus patients on medical marijuana here in Southern California and he says they seem to do great with it and he has no problem with my use.

I tried red light therapy at a tanning booth, that was supposedly without UV rays, and still flared up from it. I have only been drinking almond / rice "milk", for many years.
Thank you, so much, for taking time to share your life with me. I understand, too well, the feelings that you have for your mother. Getting properly diagnosed can be liberating, and I pray that the quality of her life improved as a result.

You've convinced me! I'm going to talk to my physician regarding hash oil treatment. I keep hearing that the best form of treatment is to eat it. Smoking anything just doesn't appeal to me. But I would be open to vaping...

Milk is off limits for me. Within a day, my body would tell me how badly an idea consuming milk was. Almond milk has been a wonderful alternative.

I wish you well! Keep sharing your story. You'll never know how much your post helped me! xo
 

·
Registered
Joined
·
39 Posts
Discussion Starter · #13 · (Edited)
I hope that this post finds you well. When I was diagnosed with SLE, it was a borderline diagnosis. I wouldn't qualify as a clinical trial case for SLE studies, but two separate specialists agreed that there was enough scientific evidence for the diagnosis. I didn't know of anyone in my family who suffered from it. But two days ago, I convinced my mother to get blood testing done, and she has it. So, I'm glad that you were able to discover what you were dealing with.

I've learned that nutrition is extremely important regarding managing SLE. Milk consumption has a very negative impact on my body. I also was skeptical about what I read about sun exposure. I'm a believer, now. I experienced the negative effects of "sun tanning" without proper sun screen. Don't do it.

Does the hash oil really help? Also, how effective has the powdered magnesium been for you?
Powdered magnesium is done on a needed basis for me personally. I do it when I get this feeling from being constipated, going through a bit of stress, and when I get this tight feeling in my tummy, and I am sleeping poorly because of it all. If I've not had the best diet, it seems to knock out some junk too. You know you have had too much of the magnesium when you are using the bathroom too much. It is better than feeling constipated and sleepless though. If you take medicine like plaquenil, as I do, I am advised to take it at least 2 hours apart from the magnesium, so the plaquenil properly absorbs.
 

·
Registered
Joined
·
25 Posts
Powdered magnesium is done on a needed basis for me personally. I do it when I get this feeling from being constipated, going through a bit of stress, and when I get this tight feeling in my tummy, and I am sleeping poorly because of it all. If I've not had the best diet, it seems to knock out some junk too. You know you have had too much of the magnesium when you are using the bathroom too much. It is better than feeling constipated and sleepless though. If you take medicine like plaquenil, as I do, I am advised to take it at least 2 hours apart from the magnesium, so the plaquenil properly absorbs.
Perfect! Thank you for sharing. Regarding your sleeplessness, fitness has helped me. Resistance and/or strength training has given me energy that sustains me throughout the day, but it also has helped me to sleep better nightly. Fitness also helps with stress management because of the endorphins that are released during your training sessions. If weight-lifting isn't your cup of tea, consider yoga or pilates.

Be well!
 

·
Registered
Joined
·
39 Posts
Discussion Starter · #15 · (Edited)
I go to the sauna and follow that up with weights every other day, or every other-other day!

It's always noticeable that I always flare less and feel better after working out.

During periods of increased fatigue I will just end up resting and slow down on exercise for a short period of time until I feel better.

Cool that we're on a close page. :D
 

·
Registered
Joined
·
25 Posts
LOL @ "...every other-other day!" I completely understand. The sauna is a blessing. I add eucalyptus oil to it, and it helps a lot with sinus congestion.

We do seem like we're on the same path. It's good that you listed to your body re: resting. That can be more beneficial than any strength training regiment. It's always good to know that we're not alone!

Be well, and keep in touch!
 

·
Registered
Joined
·
1 Posts
I've been on plaquenil for 4-5 years with no side effects, and started it early, and it's really kept my symptoms under control. The other thing I do is besides 2 cups of coffee in the AM, all I drink is water. I truly believe that's one of the main reasons for helping the symptoms of my Lupus.....



Sent from my iPad using Tapatalk
 
1 - 18 of 18 Posts
Top