medical pot

I live in Pennsylvania, USA. Now that all these states just passed either medical or recreational pot, at our recent election I would like to hear from some that have used it for pain and is it effective. Medical pot has been passed here but will be several years until it is available. I have had pmr since 2012 and it has been a real ride. My flare dose is 20mg and had shingles, problems with b/p, had a death in the family, a court deposition, bursitis and tremendous emotional stress all within a matter of 3 mos. I am doing the slow mode to taper. Took 20mg for a month, now on 18mg. On the upside, my 40 yr old daughter is having twins, a boy and a girl!!! Had a big shower for her last weekend at the Waldorf in Chicago, that was also stressful, and now have plantar fachiitis from walking through O'Hare and other airports. Can any of us ever get a break. Wait!!! the topper is our president elect. I am 71, an artist all my life (never paid the bills) and a retired cardiac nurse. I have been reading this site for years, and it has given me a lot of comfort. Sure don't get it from the Rheumey as you like to call them. My family doctor has been more supportive about letting me taper my dose according to how my body feels. The specialist wants me to go so fast down that he causes me to flare if I follow his advice. After all these years I think I know my body better.

16 Replies

  • Cannabis is still illegal here for any purpose (excepting I think MS - I do know it is available for one medical condition only) so any information is likely to be hearsay. However, I think many will watch for any information.

    The suggestions made here for slow reductions do seem to be reaching ever further out, and are being adopted in many cases.

    Congratulations to your daughter - twins at any age is something to shout about, twins at 40 deserve even more plaudits.

  • I am so thrilled I know this is just the thing to make me focus on my 2 little angels coming as I am going to stay with my daughter and help out anyway I can. Thank the lord she will be having night nurses and we will all be able to sleep. I just want to feel good enough to help out.

  • Hi I am in uk and have tried the cannibis resin . A few years ago my pain was totally out of control so the pain clinic got a licence for these trial tablets and so I thought I would try at least one tjst was a huge mistake . I was out cold for two days didn't know where I was and hubby took all the tablets back the next day apart from one I took . Sorry but I think I would rather have some pain and feel alive than spaced out for days it was awful . Hope this helps x

  • Good luck with the twins x we are going to be grandparents for the first time too in Dec but a big surprise because they don't want to know what they are having xx

  • People here in the US like to use cannabis, however some say even if they are using the kind where they take out the chemicals they don't like it because some people feel paranoid after using it. Other people love it, it makes them feel relaxed and takes away muscle and joint pain.

    I hate my pain, it prevents me from walking, going to the gym, doing yoga, painting, I am really worried about being there for my daughter to help her out when she has her twins. I get exhausted during the day and have to lay down. The fatigue is overwhelming. She lives in Chicago and I am here , so she really has no clue how this pmr affects daily life. We talk several times a day on the phone but she really doesn't understand. As I said, I am 71, was in terrific shape until I got this autoimmune disorder in 2012. It's a bummer. I don't know what her expectations are. She wants me to stay 2 wks!. My hubby is having a fit. She will have night nurses and it will be me, and her husband and my daughter. I told her they eat every 2 hrs and we will be changing about 30 diapers a day. For real!!! He will be able to stay at home for 2 months but also has to work from home. We are in for a ride, but babies are angels from heaven, so I think maybe some of that heaven will rub off on me. Let's hope.

  • The sister of my daughter-in-law gave birth to twin boys in February. They were very early and had to spend time in the hospital but fortunately we have a top notch facility. Now that they are nearly nine months old they are the most beautiful and charming sweethearts, full of energy and very alert and interested in the world around them.

    I've no personal experience of cannabis use, however I have read that CBD oil is good for inflammation.

  • I can't wait for these babies. Focusing on them and helping out will help, do you find that doing something that grabs your whole attention will keep you from feeling so much pain for a while. I can't exercise too much anymore other than walking around. When I paint this is very therapeutic.

  • I do agree that focussing on something pleasurable or interesting does indeed take away from awareness of being unwell. I'm one of the fortunate ones who has been relatively pain free since embarking on the prednisone journey. My biggest issue right now is fatigue and apparently muscle weakness, which are more pred side effects than PMR itself. This is why I need to get and keep my pred dose down as far as possible because I seem to be awfully sensitive to it. I've got to 2.5, and it's taken me nearly three months to drop .5 mg from 3 so I see this is going to be a veeerrrrryyyy long process. I'm interested in trying things which relieve inflammation and so far I receive low intensity light therapy, avoid refined carbs and most sugar (one does need the odd treat!) exercise appropriately, drink ginger tea, have started taking a kelp supplement (and I think it's helping already with the fatigue). I would have tried CBD oil if it were a simple matter of popping into the pharmacy to get some. I do have a spoonful of hemp oil every morning, but that's a source of healthy omega fats, not specifically anti-inflammatory as CBD is supposed to be. And I eat wild sourced Pacific salmon quite often. Because of a diagnosis of low bone mass I watch my diet very carefully and I think that helping the bones also has helped everything else. :)

  • I have tried everything here in the US that is available. I am gluten free and only eat fresh veggies, chicken and fish. I do take supplements. The only thing I haven't tried is acupuncture and the light therapy. I keep looking, but autoimmune is tricky. Anyone using those expensive new autoimmune medications that would cost us about 24,000.00 dollars a year in the USA?

  • Where in the US are you? Bioflex low intensity light therapy is available in quite a few places in the US. It's main centre is Toronto, Ontario, and it was developed at Guelph University. Recently there was a program on tv talking about new strategies for dealing with apparently incurable conditions and light therapy got a good segment, although they were talking about its benefit for healing brain injuries - including injuries incurred years before. It was quite remarkable. I credit this therapy for helping me get to a low dose of pred without flares in about a year and a half. I'm going to carry on with it until it can take me no further.... I believe it works for me by reducing the production of cytokines.

  • There are nobiologics that have been shown to work in PMR other than a small trial using tocilizumab - which it is hoped will be approved for GCA but which isn't very likely to ever get approval for "run of the mill" PMR at the sort of price you mention. Tocilizumab is already used for GCA by a few people in the USA - and they have funding from either insurance (some will pay if it is administered in hospital) or through the shared funding with the pharmaceutical company thing you have there which I have no real idea about.

  • Next time you go to O'Hare book airport assistance. They are outstanding! I was so worried about having a relatively short international connection (just under 4 hours but we didn't know if we had to change terminals and had to get through immigration) and I asked for assistance. Absolutely brilliant - no standing in line anywhere and no wondering where we were going. Got to the gate with nearly an hour and a half to spare.

    There is a discussion going on over on the PMRGCA forum about this - but don't ever use any of the words that might trigger the computer to "moderate" your post there, at present it is totally under the radar. A couple of people seem to have already used it - one in Canada and one in Spain.

    It is legal here where I live in Italy - but rather pricey and there is a movement to get the army to grow it and reduce the reliance on supplies from the Netherlands. Haven't tried it though. I must remember to ask my GP - she is rheumatology trained.

  • Well, I smoke two to three puffs almost every evening about an hour before bed. It separates me from the pain... I know it is still there but I don't feel it and don't worry about it. Don't try to have a conversation as my attention span is extremely short. It helps me fall asleep as I drift along with the sensation. It freaks some people out and yes on occasion it has me too but then I just go to bed.

    I have tried the candy, brownies and the medical kind to smoke and did not get the same relief or effect. It was extremely expensive.

    It was just legalized here but won't be in effect for years I hear.

    When I owned my own mobile home and would walk my dog at night in the senior park.... I smelt pot in at least three fourths of the homes.

    In my younger days I did it recreationally but do not now as I don't like how it makes me feel in the daytime. It feels much more out of control for me so I don't do it until after dark ..

    Oh oh oh I share with all my doctors that I smoke it and none have ever said anything positive or negative. They simply say ok. So I am sure if it was detrimental they would say something. But remember I only have 2-3 puffs and that is good for 2-3 hrs.

    When I was in nursing and would catch someone smoking pot I would give them a choice to have their pot or pain meds .....this man chose the pot....

  • Wish pa. had it available now I will just have to wait.don't like hearing about the expenses of medical marijuana I will be 73 by the time I can get it likes hearing about your experience

  • I hope that once it is available that they hopefully will have a sliding scale so it won't cost so much. 40 yrs ago it cost $40 for quarter pound. Now it is $40 for 1/4 of an ounce. ouch!!

    I had a medical marijuana card what a scam that is.

    You fill out a form very simple and then you see the doctor who says Ok n gives you a card all for $79.

    Then you go to the medical marijuana store and find brownies for $11 each and different kind of candies all expensive.

    The actual buds of marijuana are all classified different per do you want sleep or pain relief etc. Small amounts for if I remember was like $60. A friend who was sick gave me her shopping list and that one time only visit I spent $300 of her dollars. She shared some.

    I never went back as I don't have that kind of money.

    Maybe doctors can prescribe it and it will get paid for by our prescription plan haha 😂

  • Maybe they'll let us grow our own. Heck, our neighbourhood is riddled with a pretty pink poppy which I've been told is actually the opium poppy although no one would think of trying to gather the latex. No one's fireblasting our gardens. Same for all kinds of medicinal herbs. Why this version of the hemp plant is so feared is beyond me.

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