CBD oil / Cannabis oil recommendation – Sarcoidosis
I have had chronic sarcoidosis for over 7 years.
It initially was in my lungs and lymph glands when diagnosed. I was put onto 40mg Prednisolone for 2 weeks and immediately responded well as far as my sarc went. It was quickly isolated to my lungs and after my dose was halved it continued to improve. That is, my lungs improved. Personally, after 2 weeks of being a completed maniac and running up the wall, I began to slide into chronic fatigue which has plagued me ever since at varying levels from totally disfunctional to just about functional but completely exhausted. After 6 months I couldn’t take it anymore and against the specialists advice I tapered myself off the steroids.
Within 6 weeks I was battling to breathe and with no other option went onto Azathioprine. I was convinced to start taking low dose Pred again as the Aza takes a while to build up in your system and my breathing was still declining. I ended up around 10mg pred. I can’t remember the dosage of Aza but after 3-4 months the specialist realised it wasn’t actually working as soon as I tried to come off the steriods again. So I got stuck on the Pred at around 10mg and was told to stay at that dose for at least 1.5-2yrs before attempting to come off them. As soon as I tried to come off them my lungs flared up within a few weeks.
After years of resisting being put on Methotrexate, knowing the side effects, I gave in as I couldn’t face or cope with raising my Pred over 10mg. Anything over 10mg Pred and I end up in chronic fatigue and struggle to work. They graded me onto Mx pills to 12.5mg and I was on that dose for 2-2.5 years. If I thought the hell of steroid fatigue was bad, I was in for a shock. The Mx side effects got steadily worse. It took a while to realise that after taking my weekly dose, I had about 24hrs before the brain fog and debillitating exhaustion set in. This on top of constant steroid fatigue/exhaustion. I feel like I lost 2 years of my life to Mx. With my wife’s help I worked out that Thurs as i was finishing work was the best time to take my dose as I would hopefully make it through Friday before having the rug pulled out from under my feet. I basically slept through my whole weekends and ‘came round’ Sunday early evening. I think I had maybe 2 really functional days a week and brain function on the whole was abysmal. Memory ruined and cognitive function minimal. Luckily I can do my job in my sleep as I really have been doing this for a long time. Can’t imagine what it would be like to have a physical job. I just work on a Mac doing design work.
Towards the end of last year I couldn’t face the cycle/rollercoaster crash of my life and decided that I had to try and come off all my meds. I feel like I have lived with the hope that one day I might get off meds and find my Sarc has burned out. My specialist who is lovely said he didn’t hold out much hope for that, as I have had Sarc for so long. He has said he thinks I am steroid dependant when it comes to holding back the Sarc.
I weaned off Methotrexate over about 10 weeks but as I was coming off it I was really worried about what another flare up would mean. My next option would be Infliximab which I just couldn’t face getting on another unknown rollercoaster of symptoms.
I had heard of someone getting off there meds with cannabis tincture that they had made themselves. I didn’t want to take anything that would make me ‘high’ so started researching cannabis oils. There are various kinds and to my surprise some of them are legal in the UK as long as they have no psychoactive ingredients (THC). CBD oil has been legal since around 2015 here.
I found you could buy CBD oil on Amazon and have tried 2 different ones. The main one I take is actually made in Amsterdam from cannabis but I have used one that is made from hemp for when I have travelled. I am a bit nervous about taking it through airports either way.
I take 5 drops a day of the one I use. I hope I can say the brand name (CBD Brothers – White Edition). This one I found works for me although the tasted is a bit nasty. I leave it in my mouth as long as i can take it and then wash it done with a little fruit juice.
I have used it for almost a year now, starting as i was coming off the Methotrexate. After I got off the Mx there were no signs of a flare up. I have very slowly managed to reduce my Pred as far as 5mg. My lung function is not fantastic as I have permanent damage and each 1mg drop of steroid can take up 3 months before my breathing stabilises.
I am hoping to get off the steroids completely too but breathing is important to say the least and at 5mg my energy is vastly improved and I feel like I am actually living again.
I don’t know if everyone would have the same success with CBD oil that I have had so far. But, I am on the lowest meds I have been on in over 7 years and I still have hope that I will make it off all the meds. Previously anything under 10 mg Pred and I was in for a flare up. Our bodies have cannabinoid receptors. This to me means it is something our bodies accept for whatever reason.
I hope what I have written helps someone on here. I have to say that I spent as little time on these forums as possible other than when I was researching the meds I was on and how other people dealt with them. Many thanks for that info. Otherwise I personally found reading about other people with the same problems or way worse just brought me down. If it works for you, so be it. I just felt that I needed to give back a bit for the help I got when I needed it. I probably won’t come back on this forum for a while but will hopefully add to what I have written if I manage to get off my meds totally.
CBD oil / Cannabis oil recommendation – Sarcoidosis I have had chronic sarcoidosis for over 7 years. It initially was in my lungs and lymph glands when diagnosed. I was put onto 40mg