I quit my Plaquenil today. I think it is adding to my depression and anxiety. I am seriously thinking of taking the medical marijuana route. The medication seems to be more worry than it's worth.

OMG, try mary jane with SS at your own peril! I don't know if you know this, but pot dries you out really, really bad (it's just a side effect of the herb). Add that dryness on top of SS, and you're looking at a world of pain. Pot does help the joint pain, but between your mouths, eyes, nose and resp tract not having a lick of moisture left, you'll sobbing for mercy. Been there done that....never again!

Works good if you mix in with hot porridge or something. Haven't tried it myself but here it works and won't affect dryness or lungs. hugs m

I know smoking would not be a good idea for several reasons but there are tablets that are perscription that are supposed to work. Then I guess it can be rendered into oils or butter and cooked with. I have no idea if it works though. Also I wonder if by ingesting it there is still a drying effect?

No matter how its is ingested it dries you out same effects. The only good aspect of eating it is no lung damage.

I'd be scared to 7734 to try it with SjS. You best buy about a gallon of eye drops and a gallon jug of water to walk around with. It does have an effect on muscle spasm and some nerve pain. RA I'm sure it doesn't stop inflamation.

Ask your Rheumy or better yet, tell him a friend is thinking of it and you want to know his/her opinion. :-)

It also give you the munchies......so stock up there too. :-)

It's good to know that it is drying whether it is ingested or whatever. I don't need to add to that. I really don't need the munchies either. Thanks for the info.

Hi,

I have also thought about medicinal marijuana use, but would not know where to start. However, I recently had my vit D level checked and it was pretty low at 23. (should be between 35-100 with the optimal being 50) I am now on a prescription D for 8 weeks of 50,000 IUs once a week. Also, started a vit B Complex daily on the recommendation of my chiroprator for all the numbness and tingling I have been having. Have been doing this for about 2-3 weeks and I am noticing some improvement. I think we need to pay more attention to our vit and mineral levels etc. I am not saying it will cure us but it may be instrumental in improving the quality of our lives.

Merry Christmas and Happy New Year

Actually you are probably right about the vit and min. I've read the people with ss and other auto immune conditions are missing enzymes that break down grains. If we aren't digesting properly we probably aren't able to absorb the vit and min we need.

Whiteja,

Is spot on......

Get your blood checked and find out what is lacking. My regimen includes D in winter at fairly high doses and B I get through a drink potion I make. Also load up on antioxidants like grape juice , resveratrol or a Acai berry , spirulina and soy.
I also take a Krill oil daily which is loaded with Omega3.

When your stomach has excessive growling or going problems then add some Pineapple juice in after meals. That or a probiotics or yogurt w/enzymes.
Makes a monster difference.

I also don't drink much water it washes away what good bacteria your saliva produces. Also makes me run to the john every too often. Night time got awful for me going every couple hours.
I weened myself down......juice.....and with meals... water.

I don't believe I've ever read aboput a SjS patient taking medical marijane. Worth asking about....

I just wanted to agree with the person who said that ingesting marijuana will dry you out just as much as smoking it. I have tried marijuana a variety of ways, including eating it in various foods so as to find some desperately needed relief of joint pain. The drying effect of the herb is so outrageous and so painful on top of SS....again, I would advise anyone to be very, very carful about trying this method.

My guess is that the "pot pills" from the pharmacy will also dry you out. For me, narcotic painkillers of any kind dry me out terribly...making them essentially useless to me. If there could only be a way to kill pain without sapping what precious moisture is left in is!

mseaton-
supplements with very pure omega-3 fatty acids will help reduce inflammation (which causes most pain) AND as a benefit ,will also help your body produce more natural secretions like tears, mucus, vaginal secretions, etc. You can take pure flax seed oil pills, fish iol pills (although they often have a bad after taste) or borage oil pills. There are also supplements on the market that have more than one source of omega-3's in them. All of them need to be refrigerated.
Also, if you can, add white or pink fish to your diet. trout, salmon, cod, tuna, roughy, etc. These foods 7 supplements wont work right away, but I am sure you will notice a reduction in pain. I do all of the above for my arthritis, SJS and osteoporosis pain. I really notice a difference when I forget or run out and don't get to the store in a timely manner.