MCTD Support Group
Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...
Okay, so I finally bit the bullet, and shelled out $300 for an appointment with a cannabis doctor her in California.
This is basically one of the few totally legit doctors in my area of SoCal. There are no Jimi Hendrix posters on the wall. You meet with two doctors for an hour-- they are a bit more informal than most doctors, but it's all business. They looked up MCTD, and were doing literature review on the spot.
What we are trying is capsules of CBD oil -- there are three different varieties -- with a tiny bit of THC as a catalyst, because apparently the CBD does not work right without a trace of THC. The capsules are rated as #1 (which has virtually no THC) throught #10 (which is mostly THC). What I have been taking is one #3 in the early evening, and then a #1 early in the morning-- at 4:00 or 5:00 AM-- to improve mobility in the morning.
It's been 10 days.
I don't dare to hope, but it seems to be working.
I can sit down in my chair and bang out notes for five clients in a row. I did all my CEU units, passed every test the first time (and they were not easy.)
I had a great body boarding session-- though very short. I swam a half mile with virtually no range of motion issues, no problems with triceps, and zero feelings of fatigue.
Basically, I felt like a 58 year old instead of a 68 or 72 year old. It has not eliminated pain, but I don't want to eliminate pain-- that's existentially futile.
I suspect there are four different effects: A pain relief effect (which is mild), an antiinflammatory effect (which is quite significant), possibly and immune regulating effect (only a theory, but why is the brain fog better?) and some very vague psychoactive side effects.
I do not feel stoned. At all. I do notice a VERY mild self-consciousness that I remember from my pot smoking days-- but without the weird-head feeling of being stoned, I can't tell whether it's really the CBD/THC, or I'm just imagining it. If you had never used cannabis, you might never notice it-- or, if you were a regular user, you might never notice it. And I did have kind of odd visual effects the first day I started it, and vivid dreams one night.
But why is the brain fog better? How am I churning out so much work without feeling totally drained?
Maybe I am just between flares-- it's possible. I would need two or three months to be sure this is working.
And this is not cheap. We're talking two or three hundred bucks a month, though hopefully I can sip doses.
But this is the most hopeful I have felt in years.
Mary Ann
It is astounding what they do to separate the THC from CBD; it's quite complicated, and that is why the medication is so expensive. Essentially, you are paying lots of money so you DON'T get stoned, and have only these really vague side effects.
I was always convinced that when I did smoke weed recreationally, it diminished my symptoms. After I stopped, my symptoms got worse. However, this compound is MUCH more efficient at symptom reduction.
I never imagined I would consider spending hundreds of dollars a month so I could AVOID getting high. Life is strange!
The side effects are generally decreasing. It is very odd; three times a week, I will have some very vague psychoactive feeling-- usually, a change in visual perception when going outdoors after being inside or vice-versa, or a slight increase in agitation or rumination, usually lasting no more than 20 minutes. My thinking is extremely clear and brain fog has been absent-- that is very strange and new. When I sit down to write notes, I zero right in on what I need to say with much less effort. I do not think that I would use the #3 capsules before work, because those are the ones that produce side effects; the #1 capsules produce only a vague sense of relaxation.
Let us hope the effect remains stable, and I do not develop any additional tolerance.
Again, the worst effect I had was some restlessness and increased anxiety maybe once a week during the first three weeks, lasted only an hour or two, and only on the #3 capsules, not the #1.
Two months in, I still experience some vague visuals maybe once every ten days; I had a few last weekend-- a very subtle sense of the walls of the room not meeting at the right angles. But this only happens very late at night. I take the #3 at about 8:00 PM, and if I happen to be up at 1:00 AM, every ten days something like this might happen. It was not unpleasant, I wasn't working or driving; probably would not have been distracting if I had been. No "stony" feeling like I can't keep my eyes open or can't get off the couch-- I hated that when I smoked weed, and there is none of it, zero, with CBD. Another day, I could take the #3, stay up until 1:00 and feel zero psychoactive effects.
I actually feel sharper overall. Went camping last weekend and misplaced exactly nothing. (Well, I left my phone charger at home, but everyone does that!) No problems losing keys, glasses, or with sense of direction-- and those were ALL things that I experienced from brain fog. Getting out of the house used to be kind of a miserable ordeal; now it doesn't bother me.
Morning pain is now greatly reduced. I have better mobility and feel steadier on my feet.
Do not expect miracles. I feel like a 59 year old man, which is what I am. I still have aches and pains, they just feel... normal. Like what someone my age should expect after exertion.
I still tire easily when hiking, though I have more stamina in the water. Joint pain has not changed much, it's muscle inflammation that seems to have improved a lot. I need less sleep-- maybe 7 hours instead of 8 and a half (these totals include naps.) I'd say I've gotten back about an hour and a half of usable time every day. But if I try to get by with 6 hours or five hours, I will get run down after a few days.
It is expensive-- I use Statewide Collective here in California. Find a good, serious doctor who specializes in CBD, not some storefront quack. If you try it, please report back and let us know.
Note that it also took a week or two to be sure it was working.
Beth
Yeah, I use Statewide Collective capsules:
http://www.statewidecollective.org/capsules
50-50 would be way too much THC for me. 66/33 is the highest I will go, and then only when I'm not working nights, most evenings it's more like 80/20.
If you look at their chart, I take a #1 in the morning, and a #3 in the evening when I have to work or get up early the next day. If I'm off work the next day, I'll take a #4.
All of Statewide's capsules have 15 mg. CBD and varying amounts of THC; 7.5 is the highest I will go, I can actually feel that. The thing is, some THC is necessary b/c it acts synergistically with the CBD. I don't think of these as painkillers at all, I think they reduce inflammation and actually rebalance the immune system, but I have no evidence of that-- it's just what it feels like it does, and you have to take it for at least a few weeks to really see very noticeable effects, though I felt a bit better after the first three or four days.
* Less muscle inflamation
* Smoother movement
* More energy, though weirdly relaxed at times
* Sharp reduction in brain fog, almost completely gone
All those things tend to reduce pain, but it doesn't work like an opioid.
But...
* No effect on dysphagia. Swallowing problems are still really bad.
I have tried other formulations and they didn't work, or not as well. Yes, these capsules are expensive, and only available in California. BUT Statewide will work with you if you are a regular customer-- and you can grow your own plants from seeds they supply, there are ways you can get the cost down. Right now I am shelling out about $200 a month or so, which is unsustainable but worth every dime. Actually, it's a net positive, because I can work such longer hours now, I still wind up making more money even with the added expense. I'm basically working full time again!
I am really interested in if this works as well for anyone else.
The psychoactivity is really very, very vague. Except when it's not, which is rare, brief, strange, only with the #4s, and not completely unpleasant-- and only distantly like being stoned. You'll be walking the dogs and suddenly think, "Man, Orion is such a cool winter constellation" or you'll notice that the bass part in a song is really cool, or the colors in a picture are unusually bright-- but then you feel almost normal again. You wouldn't want to be driving or at work when that happened, but if you were? You'd probably be fine. You don't feel stoned, you just feel two or three of the sensations of being stoned. And I have no desire to smoke MJ at all.
Hope that is useful and sorry it took me so long to post back!
I've learned a little more in the last couple of weeks. Again, I am sticking with capsules and sprays, I am not vaping or smoking anything.
* Cornerstone Research Collective has a different type of high-grade CBD oil that is almost, but not quite, as effective as Statewide Collective's.
* There are rare days when I need a third dose; often I can use a 4:1 sublingual spray for that.
* I'm finding that my doctor is encouraging me to take a higher THC ratio than I am comfortable with, so I've basically decided not to do that.
* The point where things get problematic-- if you're in recovery, or just don't like the psychoactive effects-- is at about the 2:1 ratio (or 7.5 mg. THC), and then only about three or four hours after taking it. At 4:1, you might notice some vague effects, but after the first few days, it won't get in the way of anything.
2:1 is more tricky. You don't feel high, so that's good. The symptom relief is excellent-- very clear-headed, and I write fast and lucid notes when I'm working (at home.) Utter absence of brain fog, which is so UNLIKE marijuana intoxication that you are lulled into the feeling you are not impaired.
You might notice that you think of a creative workaround for delivering a certain document or filling out a form, or be playing guitar and notice that you're kind of swinging with the beat a little bit. But you don't feel like laughing hysterically, or like you can't get off the couch.
However, guess what? It's not a good idea to drive or operate heavy machinery. And I can't tell you exactly why. I can only say that it doesn't feel quite right. A couple of times I've gotten in the car, gotten to the bottom of the hill, and thought, "I'm having to think about this way too much. And the instrument cluster of my sports car suddenly looks a little too much like the control panel of the Millenium Falcon."
And turned around and come home and I feel like I'm being too cautious, but... you can't be too cautious. So now I only go up to 2:1 when I know I don't have to drive anywhere, or not after the third hour, anyway. If you go to sleep by the third hour, you probably won't notice feeling anything different.
I think the "entourage" effect is real, but overblown. In other words, I do think the CBD works better with trace amounts of THC but that it could be easy for some people to dose with larger amounts of THC because they aren't "feeling" anything, and doctors tend to buy into this as well.
My doctor has told me to start the day with 4:1 CBD/THC, take another 4:1 CBD/THC in the afternoon, and a third 4:1 CBD/THC in the evening. And I think that's too much THC.
What I actually do is start with a 16:1 in the morning, and then take a 4:1 in the evening if I have to work late or get up early, a 2:1 if I don't.
I only take a dose in the middle of the day if I'm really having trouble getting around, and then it's usually a 16:1 or 8:1.
I have been considering Medical Cannabis for a year or so but could not find any reports that were a hands on experience from someone with MCTD.
The law has just changed here in Australia in November 2016 and Medical Cannabis is now legal to grow/sell/research at fedral level if you qualify for a licence. The states have their own laws are still catching up (slowly).
There is a guy in New South Wales who has been (very openly) making oil for sick people for 10 years illegaly and has just been granted a licence to operate.
Hopefully a meeting with my immunologist will get me on the patient list so I can try this out and post some results :-)
Questions: Have you noticed a change in your U1-RNP ANA counts ?
http://thewercshop.com/services/terpene-profiling-services/
In answer to your question, I do not follow my ANA anti-RNP on a regular basis, mainly because the old school (and in my view, more accurate) view was that these do not correlate directly with symptom severity. I do know that the three or four times my anti-RNP was checked, the titre was crazy high, either at or just outside the range of the test. And yet, my symptoms are on the lower side of moderate (except for the pericarditis as a teenager and the two blood clots.)
My ANA generally has nothing to do with symptoms such as severity of muscle inflammation. I know it seems strange, but many tests are like this... my d-Dimer was negative for one blood clot, which is supposed to be highly unusual, but when you investigate what people on forums post, it's not that uncommon. (d-Dimer was positive for the second clot.)
Thus, these test results are a marker for MCTD, but not necessarily what cause it, so reducing the titre-- even if that were possible-- would not necessarily reduce symptoms. Anti-RNP usually stays positive throughout a patient's life. After I've been on this stuff a few years, it would be interesting to get another antibody test. If the titre was in the normal range, that would be pretty cool, and might be some kind of indicator that some kind of immunological balance is being restored.
The terpene thing is very interesting, though I can't quite follow it.
I am finding that I am still having trouble when the humidity fluctuates or is crazy high, but not as much trouble as before CBD-- I sometimes need a third dose on those days, and only get partial relief. When humidity is stable, I feel almost normal when I'm taking CBD.
I am also finding differences between Statewide and Care by Design capsules. Care by Design capsules work well on the first day or two, but not as well over a period of days, almost like I'm building up a resistance to something.
Statwide capsules are more consistent (though not perfect) at relieving inflammation, but I feel like the THC content varies more than advertised. Most days I've taken a #4, I feel almost no psychoactive effects, but once or twice, they've seemed to be extremely psychoactive. On a couple of occasions, I have taken a #3 and found it to be as psychoactive as #4 usually is-- and on one occasion, a #3 seemed more psychoactive than a #4!
The dispensary basically considers the levels of THC in #3 to be non-psychoactive, and they look at me like I'm a little crazy when I talk about this. But for any activity that requires mental acuity, or for driving, I don't think I'd go past 18:1 CBD/THC, maybe 8:1 for someone with very high tolerance.
The other problem I am having is that when the CBD works, I do SO much more that it's really easy to do too much yard work, too much exercise, etc. On a quick trip to Palm Springs, I used the fitness center and did the kind of 30-minute workout I haven't done since about 2008. This was after doing hours of housecleaning and yard work the previous week.
Then the humidity shot up... not a full-on MCTD flare up by any means, but it was clear I had overdone it.
I agree the terpene thing is a bit out there. I think what they are getting at is a different terpene profile between 2 equil matched (CBD,THC) samples may have a different effect on a specific type of condition for a user.
Maybe it's is just a way to prove the plant strain changed, sorta like how they pick the right plant for people with PTSD to reduce paranoia.
It would be interesting to see a terpene profile between your Statewide and Care by Design capsules to see what is going on ... almost like food labeling.
If your CBD is working that good and you get to do lots (even if too much) ... it almost sounds like short a course of Prednisone without the angery's and other fun side effects ... I can live with that !
Although I must say, as bad as Pred is for a human, it sure is the "swiss army knife" of drugs and makes for thinking some crazy shit. In Dec 2013 I wound up almost not breathing in the Royal Brisbane Cardiac Ward with pericarditis (half a litre) ... they could'nt drain it so you guessed it ... "more Pred" ... 50mg a day for a week plus other stuff ... I was bouncing round the ward like a bloody kangaroo and babbleling rubbish to anyone who would listen ... bit of a wild ride and still alive :-)