Medical cannabis can supposedly lower inflammation in SJS and regulate the immune system:
http://www.medicalmarijuanainc.com/sjogrens-syndrome-medical-marijuana-research-overview/
(Of course I'm not talking about smoking it but injesting, using the oil form, etc.)
Has it helped anybody with their SJS symptoms enough to use it as a sole treatment?
What symptoms has it helped the most with?
Thanks!
Noody has any experience with this? :-\
On my trip last year, I had blue berry cobbler made with green butter. I had 16 hours without pain. The vision in my bad eye cleared. My blood pressure was lower. I thought this is great! I had never had this type of effect from any other medication. The first couple of hours after taking it, I did have hallucinations that I did not like.
I still needed to sip water. I did not have hunger / munchies. It would be nice to have it legal and affordable. In the 60's it grew wild near rivers, and in diches along roadways. It was grown an farms in the 20's for rope. Then it was made illegal. Who does not remember "Reefer Madness"?
Being a "Straight Arrow" I never used it before last year. I went to parties where it was used. In the late 60's, I grafted hops to marijuana as an experiment for a friend.
I have no experience with this at all. I look for community p.r. opportunities for my Sjogren's support group..and noticed that in April they are having the first medical marijuana conference and expo here in Pittsburgh. Would love to go just to try to learn.
SjoDry
Joe- I'm not familiar with the different strains...do you know which one would be most helpful in lowering inflammation?
SjoDry- I'd be interested in hearing of any information you may aquire!
I live in a state where it's legal for medical use. I tend to be very drug sensitive, so am concerned about using it because I seem to react everything. My partner thinks it would be good to try.
I did a google search to see what I could find, and there are articles and case studies out there. I don't know enough about all the new ways of delivering it (capsules, oils) to be able to decipher it without some more research. Nor do I understand if you can do controlled dosing.
Maybe dig around some of that material?
Hi warmwaters, there is indeed much information but it isn't clear to me which strain would be most effective for SJS. It seems you can do controlled dosing. Seems to me to be worth a try. I too am very sensitive to medications, but I'd rather try cannabis than spend my life on steroids which is all the doctors will prescribe me.
Sharon - Look for strains that are high in CBD. A quick google search can tell you which strains this would be.
It wouldn't hurt to also research the effects of CBD, THC, etc....l
I have no idea what the strain was. it was prescribed for a cancer patient to help with pain. He was very active until he died a few month later.
Thanks, there's some contradicting info out there.
I've read the CBD modulates the immune system but doesn't affect presence of mind, but the THC actually reduces inflammation quickly but is more intoxicating.
Hmmm.... ???
I recently started a treatment regimen using CBD oil. CBD has shown promise as an anti-inflamatory and immunomodulator, though research is very limited. CBD does not have the typical side effects that comes from marijuana usage (increased appetite, relaxation, anxiety, etc.) which are largely attributable to THC. High CBD/low THC products can be purchased at dispensaries in states where marijuana is legal. CBD can also be obtained from industrial hemp, which is grown in many countries and can be legally imported (for now at least) into the USA, though there is little regulation.
Unfortunately, it's a bit challenging to find a proper dosing protocol as there is limited research available, but I will try to track my benefits. I wrote a post (http://www.whatyousjo.com/2016/12/medical-marijuanacannabidiol-cbd-for-sjogrens-syndrome/) about it on my blog.
I smoked occasionally several years back. Was never big on it, and I never saw myself going back to it because of some paranoia/anxiety issues while on it. But if CBD oil proves effective, I will definitely hit up some the dispensaries around my area.
I would be very leary of smoking it because of what it can do to the lungs. It may have anti inflammatory effects but I would think that the pain would be the first thing that would be helped. I just think that smoking that horrible smoke would really throw you into lung issues that could be attributed to autoimmune issues or COP issues.
When I was nursing I gave a medication called Marinol --oral capsule form marijuana-- to a cancer patient and it really helped with his pain and increased his appetite. As a result he was able to eat and get around more and didn't languish in bed as long. It was a @#%$^ getting the prescription filled for him though as only one doc would take the risk to order it. Really was a problem. If he was in the hospital he would not have been able to do the Marinol. Because he was in assisted living it was easier to do because of the rules and regulations. Irish
WhatYouSjo- Thanks for your response! I also read your blog post on this and really look forward to hearing how the CBD helps your symptoms. The only legal product I can purchase where I live is hemp seed oil. Do you know anything of the CBD content in it?
Irish- Thanks, I would never dream of smoking it, maybe just taking the oil.
I've thought a lot about trying marijuana. I live in a state where it's now legal. And there is a store nearby that has rave reviews on Yelp for having an owner who is very knowledgable on medical effects of the different strains. Sativa strains are relaxing to soporific and Indica strains are more mental clarity through anxiety. The Indica ones are usually the ones taken for pain relief. But then there are all the crosses that emphasize different characteristics and are best for overall inflammation.
I'm really sensitive to things that alter my energy (sleeping pills make me groggy for days and even decaf drinks make me jittery and insomniac.). Someday, I intend to talk with the owner of the store and see what he recommends.
I'm interested in strains that decrease overall inflammation. Science Daily reports on a study on marijuana use in autoimmune disease. sciencedaily.com/releases/2014/06/140602150914.htm
I smoked weed occasionally in the 60s. But found it was making me uncomfortably self-aware and self- conscious and decided that a glass of wine was much more comfortable. (I do neither now) But weed is very different now, I'm told. Breeding has done so much to customize it and select for its effect.
I'd be really interested to hear from someone who has used it recently.
Thanks Sooki, interesting article.
They're claiming the THC component suppresses the immune system and lowers overall inflammation.
I'm still confused then as to which component is the one best for inflammation- CBD or THC? ???
Let us know what the store owner recommends if you ever do speak with him.
Not to confuse the issue more, but some of the articles suggest that besides the THC and CBD components, the terpenes which are the volatile oils that give each specific named variety its character, may be the most potent medicinal components. The conclusion is that using the whole plant, not just an extract, may have benefits. There are medicinal guides to strains but it doesn't mean much in the abstract. And each of pain, inflammation, insomnia, depression, muscle spasms, etc. may lead to a different recommendation.
Thanks Sooki, confusing indeed.
To add to the controversy, why can't we just use the wild weeds found in woods, river banks and ditches?
Quote from: Sharon on December 06, 2016, 12:13:35 PM
WhatYouSjo- Thanks for your response! I also read your blog post on this and really look forward to hearing how the CBD helps your symptoms. The only legal product I can purchase where I live is hemp seed oil. Do you know anything of the CBD content in it?
Unfortunately, high-CBD oil is different from hemp seed oil. There is an explanation here (http://www.chronictherapy.co/hemp-oil-vs-cbd-oil-whats-the-difference-2/). Hemp seed oil is made from only the plant's seeds and has a negligible amount of CBD. CBD oil can be made from the stems and leaves of industrial hemp. There are sellers where you can purchase CBD oil made from industrial hemp (usually at high prices). Importing it into states where cannabis is banned is a somewhat grey area legally (https://www.reddit.com/r/CBD/comments/5h2k9t/i_always_hear_that_cbd_oil_is_legal_in_all_50/). I'm afraid that I am less familiar with regulations outside of the United States.
I am in TX and hear rumblings of legalizing it here. I smoked for 25 years ...just cigarettes. It's a horrid habit. I couldn't ever smoke again thinking now how much my throat bothered me for about 20 years before the SjS meds.
Now then, brownies? That's another thing. :)
I'd use it....except....i'm so old, i'm not sure all my aches and fatigue are related to SjS. When you are going on 75, people have aged bodies!!
c3
WhatYouSjo- Thanks for the clarification. I may have to travel to give it a try.
Hope to hear it works well for you!
C3- It's supposed to help with many conditions and different forms of aches and pains.
I believe it would be worth a try for you!
Hello, I'm also very interested in anyone's experience. I'm in NY where it is legal as of last year and my Dr has registered me for the medical marijuana program. Unfortunately I've run into difficulties getting myself registered online but hopefully I'll have this sorted out soon.
I'll report back once I've tried it a few times.
-Ig
I look forward to hearing about your experiences ignatz!
Ignatz,
Did your doctor tell you how to dose it?
I also am looking forward to hearing how it works for you.
Still struggling with the red tape (fyi...In NYS your application had better exactly match what is on your Driver's License or you go to the back of the line! :D).
There is no dosing from the Dr per se but its worth noting that your Dr determines if you can get the high THC or high CBD or both based on what he writes in the application.
I don't know if any of you have seen the latest info on a medical disorder that is starting to affect people who use marijuana. They have been seeing people come through the ER and it took the docs a good amount of time to figure out what it was.
These people are having bad cases of vomiting and diarrhea and is almost uncontrollable. They need IV fluids and meds to stop the vomiting and nausea. The problem is they go home and pretty soon they are back in with the same thing. It is very chronic and they have found that as time progresses it progresses to Heart failure(hope I got that one right) and for sure kidney failure and ultimately death.
I would guess that either the smoking or the oral could cause this syndrome as the drug gets in the blood stream both ways. I first saw this in the news online and then since then it has been on TV. Irish
Irish, do you know if this is from a reaction to marijuana proper or marijuana laced with other substances?
Irish, you are likely referring to Cannabinoid Hyperemesis Syndrome (Wikipedia (https://en.wikipedia.org/wiki/Cannabinoid_hyperemesis_syndrome)). There is much that is unknown about CHS, due to restrictions on marijuana research in many countries. However this syndrome is fairly rare and completely reversible. A study (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3576702/) found that patients generally need to smoke in excess of 3-5 times a day for 16 years before developing it. The evidence today almost always involves smoking, and the syndrome is more likely to be associated with THC than CBD, though the data is incomplete. There is no evidence that the use of CBD oil leads to CHS (though there is limited data in this area).
Even if one was to develop CHS, symptoms disappear upon the cessation of marijuana use. The sensationalist stories that you alluded to usually involve CHS patients who increase their marijuana usage in an attempt to treat their CHS symptoms, which end up making the symptoms worse.
Compared to the side effects for prescription SS treatments (permanent blindness for Plaquenil, lethal brain infections (PML) for Rituxan, other fatal infections for many immunosuppresants), I find CBD oil to be very low-risk.
I don't know all the specifics, but do know that one will improve if they quite using the marijunana. Also, the doctor sounded like he felt it was pretty awful dependent on what he has seen in the ER. Obviously it would be in long time users and that is what the doctor said.
Everyone has to make their own choices in regards to what they medicate with for relief, but people should be aware of what could lie down the pike. Everyone is always affected differently and I would bet that people would avoid going to ER if they could get by with it to save money. Avoiding the ER in regards to this problem could prove to be an unhealthy choice for some people. Irish
I'd be willing to try medical marijuana if it would help me! I think they should just make it legal, regulate it, and tax it.
I think it would be safer that way.
Kathy
They've had a lot of issues in Colorado with people just staying stoned on the really strong stuff from what I hear. It's a shame, but some will abuse the strong stuff which is apparently very different from the medical grades. I think it could possibly keep people from getting hooked on stronger pain meds or getting ulcers from NSAIDS. You can get medical marijuana here now and I can't decide if I want to try it or not. God knows, I could use it for the darn aches and pains......... I'll let y'all know if I try it.
I agree with WhatYouSjo- definitely the "lesser of all evils" by far...
if it works for us!
If I had the opportunity I wouldn't hesitate.
I'm currently experimenting with CBD oil but I can't seem to find the right dosage. I'm taking Green Roads CBD sublingually every day. I started at the lowest dosage they had, which was 100 mg but haven't noticed any significant improvement. I'd be interested to hear what dosages others have tried? I've been following WhatYouSjo's blog too. My father has epilepsy and has had great success on it. His neurologist is saying he may be able to come off of some of his anticonvulsants.
Finally made it to a dispensary here in NY. What they had on hand was very limited but they did offer oil with a 2:1 ratio of CBD:THC.
The recommended dose of the oil is 1ml twice a day sublingual. Each 1ml contains 6.7mg CBD and 3.3mg THC. Apparently some other dispensaries offer produces with higher concentrations of CBD but this is the highest they had.
I've only just started using it so too early to say if the CBD is helping. One side effect I noticed today was low blood pressure that led to dizziness and heart palpitations. It wasn't a problem until I was doing yard work and getting up and down a lot.
Also I did feel the high from the THC, it was subtle but noticeable.
Something else to note is the cost. A one month supply is $90 (cash only for some reason), that's really adds up after a while. Insurance won't cover it here in NY, I'm not sure if that's true everywhere.
I'll give it a week or two and post my impressions.
-Ig
Good luck to those that are able to try it. Keep us informed. It would be so nice to have the pain removed. My MD has refused to refer me. $90/mo for less pain is reasonable. Then you add the bonus of lower blood pressure and Glaucoma assistance and it is less than some of the meds that I am taking.
Quote from: ignatz on February 18, 2017, 01:36:32 PM
Finally made it to a dispensary here in NY. What they had on hand was very limited but they did offer oil with a 2:1 ratio of CBD:THC.
The recommended dose of the oil is 1ml twice a day sublingual. Each 1ml contains 6.7mg CBD and 3.3mg THC. Apparently some other dispensaries offer produces with higher concentrations of CBD but this is the highest they had.
I've only just started using it so too early to say if the CBD is helping. One side effect I noticed today was low blood pressure that led to dizziness and heart palpitations. It wasn't a problem until I was doing yard work and getting up and down a lot.
Also I did feel the high from the THC, it was subtle but noticeable.
Something else to note is the cost. A one month supply is $90 (cash only for some reason), that's really adds up after a while. Insurance won't cover it here in NY, I'm not sure if that's true everywhere.
I'll give it a week or two and post my impressions.
-Ig
Most dispensaries are cash only because, though some states have legalized marijuana, federal law prohibits banks and credit unions from taking marijuana money. Business people in the industry have problems getting bank accounts. That would change if Congress were to take marijuana off the federal government's list of most dangerous drugs.
Too bad about the previous sentence because there are many legal prescription drugs that, unlike marijuana, have proven to be dangerous, as can be seen by the opiod epidemic.
I agree with everybody who's saying it's far less dangerous than so many of the other legal meds out there.
I can't seem to tolerate any AI med so far and the side effects have been toxic in some cases!
Ignatz- What symptoms are you taking it for? The THC usually makes a difference in pain soon after taking.
The THC component is also probably causing your side effects.
You can also probably find just pure CBD oil.
@sunshine: ok, that makes sense. And btw, from what I read in the pamphlet they gave me you are governed by the states/countries laws you travel to so I wouldn't take any of this while traveling.
@Sharon and Joe: I have migraines and minor joint pain issues from SLE that's why I was prescribed it. I'm hoping that it will help to regulate my AI in other ways and help my energy and memory, we'll see. My joint pain isn't severe enough to give that a good test but I'll see if it helps.
I noticed the THC when I was at the grocery store taking noticeably longer than usual to shop and it finally occurred me why. The THC made me a bit spacey but it wasn't unpleasant in any way. I can see how this could be very helpful for people in real pain.
What I've read is that there's a synergy between CBD and THC so that you won't get all the benefits without at least some mixing. The guy there (a pharmacist with years of experience by the way) mentioned that there were some dispensaries that offered 6:1 CBD oil but they didn't have it yet. So I took Sharon's advice and looked online and found a place that offers 'pure' CBD oil (apparently there's trace amounts of THC) and ordered some. I plan on mixing the two oils to make the CBD proportion higher, along the lines of 5 or 6 to 1.
For now I've cut my dose in half, .5ml twice a day, to avoid the THC high.
-Ig
Hope it works for you ignatz,
keep us posted on your progress! :)
I am considering a move. OR or WA. Housing cost is more expensive than here. I will Check out 55+ locations in July.
Good luck Joe! I would also consider moving for cannabis.
Nothing is more important than our health.
Joe S. - We've lived in WA for 25 years and really like it. Good climate for Sjoggies, moist and not to bright :). Prices within commute distance to the larger cities along I-5 are out of reach for most people. But there are a lot of other areas that are quite a bit lower.
Rural areas are less, but stay away from anything that advertises "stream frontage" - often code for flood zone. The area between I-5 and the coast is still Sjoggie weather and less expensive. East of I-5, the climate gets drier and sunnier.
I know the Seattle (and probably Portland) area has great medical facilities for autoimmune and alternative medicine as well. And cannabis is definitely available everywhere! everywhere!
Can anybody trying medical cannabis report if it has helped them with any other symptoms
besides pain and anxiety related issues?
Well it's been a few weeks now so I thought I would update my experiences.
Dosage: Two weeks ago I bought some CBD oil online and use it with the medical marijuana oil. My dose is ~11mg CBD, 1.7mg THC, twice daily.
Unfortunately even with that reduce amount of THC I can feel the 'high'. The symptoms that bother me the most are fatigue, brain fog, and troubles with short term memory and the THC increases the brain fog. I believe someone dealing with pain issues from fibro or RA etc, could get a good benefit from this but the increased distraction level from the THC wasn't good for me.
I will say that it improved my mood and was pleasant as long as no detailed cognitive skills were required.
I'll continue with it with an even more reduced THC dose but I can't say that I've felt any great benefit from the CBD so far, but keep in mind that it's still early.
Everyone reacts differently though. I'll be interested to hear from others.
-Ig
I've taken 10mg CBD (0.2 mg THC) doses, 1-2 times per day for a couple months. I can't say that I've noticed significant improvements, though it may be helping to soften the edges on some of my symptoms. I've had a couple instances of vertigo while on it, but I'm not sure that I can directly label it a side effect yet.
I have read some literature saying that autoimmune patients need much higher doses that the usual amount prescribed for anxiety, perhaps even 100mg+ per day. Unfortunately, that is a bit cost-prohibitive for me at the present time. If I can find a good deal I may try a high dose for a week or two and see if I notice any effects.
Thanks for your updates ignatz and WhatYouSjo.
I do believe very high levels of CBD are required to improve our condition.
On the other hand THC works very quickly for joint pains (I think for gastro pains as well) when inhaled.