Advice Please - Teenage Girl - Lupus

Welcome kathy122 to the group!

I wish I could give you some insight, but, i'm sorry, I can't.

I know that there are a lot of people that use "medical marijuana" for pain control with autoimmune diseases, including lupus, but as for long term effects and such, I just don't know.


Hugs,
ladybrannon

I had to take thc pills for one of the medicines that I was on for lupus- methotrexate- it made me throw up- and the doctor said that was fine, im not sure it has any negative affects on the disease, but I never had a flare up or anything.

While I don't advocate drug use, I have been researching the role medical marijuana could play in managing lupus. Because it has immunosuppressive properties, what I have read so far looks interesting, but is as of yet inconclusive. I will, however, be investigating the relationship pot could have with stroke activity, since I have just returned home from the hospital after having a mini stroke- my 2nd in 6 years, and after more than a year without a significant flare-up.
Any thoughts?

I am so sorry to hear about your strokes! I hope you dont have anymore:(i have heard that thc is supposed to help with the pain- I never got any help from it. All it seems to do for me is make me fall asleep. I dont take it anymore, I couldnt stand the way it made me feel- someone could be sitting with me watching tv, get up to go to the bathroom and for the life of me I couldnt figure out where they had gone- not a good feeling. Lol but let us know what you find out!!

Well everyone is effected different I will smoke occasionally and it helps my joints and stress but its bad obviously for your lungs and such.. It also depends on how much you smoke and what kind. I spoke with my dr about it and he did say whatever helps he cant tell me not to. So there are side effects to everything like you can become more sleepy, and even depressed. But for the 15 yr old im sure there were other factors. Like staying up late with friends and not enough sleep. Over doing it. And pushing her body. All of these can be the most dangerous to people who have lupus. I have noticed that everyone who has made a comment about themselves say that they were very active. I was too now you have to monitor everything you do. Its no fun. But focus on your body and your symptoms and figure out why you have flare ups. Its your body and you need to learn the new you keep a journal of symptoms each day and what you eat. Activities will def. Make a diff. In how you feel.
Questions nicholehandrannikki@hotmail.Com
nikki

"well, everyone is effected different I will smoke occasionally and it helps my joints and stress but its bad obviously for your lungs and such.. It also depends on how much you smoke and what kind."
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this brings up a valid point- I personally smoke only top grade, and take one or two hits to relieve pain and stress, and not every day. I had been a non smoker for over a decade, and indulged at a birthday concert held for my birthday this august, then realized 2 days later that I had an absence of pain for almost 48 hours. That was the kicker- because we all know, when you live with pain on a daily basis, the only time you notice it is when it is gone. But, I have also returned to my "health food nut" ways, because I know too much about the benefits that good nutritional support and herbal protocols can have. You have to know your body well, and learn what things trigger your flare ups. I have always been a research nut, so when I found this forum I became convinced that I could help other people, ones that were newly diagnosed, those still leraning and seeking answers, or those not as motivated towards research as myself. Each of us with sle are as individual as our personal trip with lupus is. I returned to my nutrional roots when I started a temp gig at a company that manufactures and sells top quality, deeply researched and highly ethical herbal "whole food" vegan supplements.

Their main product is called "vitamineral green", and is what is known as a "superfood". Long story short, it is a green powder with all the good stuff, and 5 weeks into experimenting on myself with daily doses of this product, I can honestly say with true joy, that today, thanksgiving, I got up before 9 a.M., and worked all day cooking a holiday dinner, ate it, and even cleaned up afterwards. And now I am writing this. To the "normal" people, that would seem, well, normal. But to my family- it was a incredibly' miracle, something I hadn't done since my diagnosis in 1999. Changing my eating habits, adding nutrional support that I knew was lacking because of lupus, these are just some of the things we can do to alleviate symptoms. Of course, the t.I.A. I had last week threw me for a loop, but I know what caused it now after rigorous investigation. I will sign off with this alert- if you have mild- to moderate sle, and your circulatory is involved, don't drink yerba mate tea. I turns out it has an ambiguous reputation. Which brings up one more thing- even when you read and research through several hundred pages of internet info- there's always going to be a yin-yang spin to it all. It works, it doesn't- and it all depends on the opinion of the person or persons publishing the information.

Don't believe everything you read, but keep reading everything you can to determine what can work best for you.
Discussing things frankly with your rheumatologist is absolutely important. I happen to live in southern california, and I have been blessed to have found one that is very open minded- but balks at the idea of actually writing a prescription for marijuana.

Just having options, these personal choices have given me more control over the pain aspect of my sle. There are more options available with some herbal and nutritional supplements that are completely legal, and highly effective. For example, by raising the magnesium levels in my diet and supplements, the fibromyalgia is becoming less of an attention getter. By that I mean my focus isn't so much on the incredibly pain, so I can go about my daily life without focusing and compensating for the pain, and the rewards are having more energy to spend on my family and even myself.

Ok, it's been a long day, and the turkey I gorged on is making me very sleepy.

Happy thanksgiving everyone.
I am very thankful that there is this forum to vent, and dispense my knowledge and "advice". Till now, I haven't ever joined a forum, I thought of them as to...Well, dumb. This one is definately not dumb, and what I read here also helps me in so many ways.

God bless you all!

L

Wow. Haven’t I been in that boat? I’m 18 now and I was diagnosed at 12. I’m also glad to report that the lupus wouldn’t have been affected amazingly by the smoking. What she’d have to watch out for would be blood pressure, heart problems, or other underlying illness. Pot can do some pretty weird things health-wise, but it really is the safest drug out there (better than cigs, actually).

I hope she keeps getting better.

Im 21 and im sorry it took me so long to try it :p I have to say it really does help and its no worse than any other medication lupus patients have to take, think of all the side effects from the coctail of medication I take, prednisone, chemo and much more! All 10 of them all have harsh side effects, I have been on prednisone for many years and I have really bad osteoporosis because of the medication, I have a fracture in my back from maybe sneezing or something, my muscles are so weak I fell over a year ago and tore my quad and it never healed, acne, weight gain .. Thats just one medication add on the side effects of 9 more and smoking some weed doesnt sound so bad does it, mostly it helps me sleep, and thats a big help when ur in a lot of pain and u need to relax for a while :)

Okay, so i'm 19 and I was just diagnoised with sle in like may and before all that happened while I was in highschool and all, well, lets just say I was a partier, but I always perferred mj to alcohol because I liked remembering what happened that night before. Well, about a year before all this lupus stuff started is when I pretty much quit smoking mj all together. I am so happy to find out that mj is well, semi okay. Then I started to wonder if maybe thats what kept me from having my first flare up all those years before because I always laughed at those don't smoke pot ads that said smoking pot can cause you to get sick more often sense it represses the immune system, well, I was always the type of person who never got sick, and if I did....It was once in a great while, I still haven't had the flu since I was 12 years old. But what about the fact that with the lupus flare up which was in my kidneys, it was only at a level 2, but I also had ttp/hus which cause kidney failure and will smoking weed hurt my kidneys any worse, because they have fully recovered and if it will do more damage I don't want to risk it.

I am 21 years old and marijuana actually prolonged my diagnosis of lupus; because it was semi-controlling flare-ups. I have suffered for years; simply being told I was depressed and given an anti-depressant. Marijuana makes me feel alive, and somewhat normal. I thank god for such a wonderful gift. Merry christmas!

A first of all in strokes is taking sedative remedies,and herbs.And avoid take,drink narcotic kinds,alkochol that leads to a bad results!
Strokes attack needing in a first aid.Please read books and consult with your dr about a first aid in stroke in case if in your Dr.Will be again stroke attack you can help her.
Sincerely,julia/educater about lupus,manager kill a lupus group/.

i can agree with the people who said it helped with aching joints b/c ever since my last episode at 15 yrs old, i haven't had any "joint pains" and i'm now 19 yrs old. i wish the researchers could look into more so they can make it legal for all LUPUS PATIENTS!

i was just diagnoised with sle 2 weeks ago and i've been looking at meds and all the side effects seem to hurt you just as much as the sle does im wondering if smoking weed would be the right way to go? or atleast the less painful way

I'd go for the weed were it not for that it makes me a bit socially paranoid, meaning: if I smoke it, I don't want to be seen by people; I imagine that they'd know I'm "high", bloodshot eyes. But it does calm, and calm brings good sleep, and good sleep seems to be key to quieting lupus flares.

Instead, for several weeks now, I am on valium/generic, cheap and even legal.
That story is fully documented in the thread,
http://ehealthforum.com/health/un officially-diagnosed-lupus-t154267.html

DISCLAIMER: my self-treatment is only of a few weeks duration now.
Yet I had had NO let up of ever-worsening lupus affects for months.
Now I am in complete remission. My formerly very high blood pressure is normal now.
Just thirty minutes ago, I took a 10mg pill of this (addictive) drug.
Notice that I'm not 'stoned' or incoherent in writing this post, nor euphoric.

It may be worthwhile to print these and other postings by members here
to talk over with one's licensed physician. Most all of them are eager to really help you.
They have legal power to prescribe even non-standard treatments for people,
rather than go the usual way: prednisone and other powerful yet generally dangerous drugs.

Valium is addictive but non-narcotic.
Weed is not physically addictive, and also, non-narcotic.
But weed can, if used in excess (not done by the advocate above), make some people into pot heads.

Choose your "poisons" carefully, I say, and moderate everything as much as you can:
avoid people, if possible, who say to your distress, "You look fine! There's nothing wrong with you!"

Kind'a makes one wish he/she, the nay-sayer, could trade places with you for one day, one week, one month.