Cannabis & Vasculiti

Cannabis oil, a controversial *treatment* that a few hundreds have tried and has had success where all other medication has proved unhelpful.

I can't help but be disturbed by the idea the weakening the immune system is the only way to deal with so many diseases. I am as uncomfortable today and after 9 years of Crohn's & who know how many years of small cell vasculitis, as I was when first given them. It just doesn't sit right with me & I have always been a guy who has to research what these meds do and then try to rationalise the use of them. I know many will reject outright the idea of cannabis oil being of benefit but I have actually now spoken to 3 people who were in stage 4 of cancers and are now free and to one person with vasculitis who has now been in remission for over 18 months. I wanted to post this here more to gauge what others think of this and in whether it would be rejected outright as I am planning to try this myself.

I have spoken to many different IBD specialists and have found that there is a difference in opinion on whether it is an immune system disease or if it is caused after infection so I guess I am not alone in trying to pursue other avenues of treatment.

It's a shame that this comes down to legalities but I feel that I am losing control of my own life and handing it over to pharmaceutical companies and those who have no interest in cure but more in treating samptoms. I read many of the stories of fellow sufferers and feel horrified that so many have remained on high doses of immuno suppressive drugs that can lead to many other and worse diseases and so I am now at a point where I feel I want to try this alternative treatment myself.

Does anyone else have any opinion on this please. I understand the worry of being caught but, for me, I feel the risk is worth it. Thanks and I wish you all the very best

26 Replies

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  • CBD oil without the THC is actually completely legal. I have studied this and want to try it as well. However, do the people you know use the cannabis oil with the THC? I've heard and read that the one with THC works better but the one without still works. If I tried the ones with THC I would have to move to a state that legalized it here in the U.S. Let me know what you find out! The drugs don't really work anyway so like you I'm looking to natural ways of treating it.

    Take care, Tina

  • finally feel like I'm on to something. I agree on the cbd oil and THC. I'm in Canada and i still am having a hard time getting a license. But they prescribed me hydromorphone for pain and its just stupid. I have been on prednisone for 2 months now and I to agree its not helping me but instead messing me up. I'll let you know how the oil works. Keep me posted with any progress.

  • Thanks Greg! I had major side effects from steroids. Not only did I gain 73 pounds, I broke 4 vertebrae from compression fractures, have eye issues, thin skin etc. and I am only 49! Everything they treat this with has awful side effects some worse than the disease and I am tired of my health regressing because of all of it! I know the CBD oils work. Just curious how much of the one without THC I will need to be effective like the ones with THC. If you find out let me know! I will also let you know what I find. I know it helps a lot with other autoimmune diseases. I'm sure it will with Vasculitis too. I was diagnosed with CNS Vasculitis. I have also been diagnosed with Lupus, MS, Rheumatoid Arthritis, CIDP, Sjogren's and Pseudotumor. Crazy mix! I seriously would move to Colorado in a heart beat of my husband could get a job there! It's not out of the question. It's sad that everyone doesn't have access to this awesome gift of nature!

  • Wow Greg,

    I am so sorry that you have so many diseases to deal with. It certainly put mine I to perspective and I thought I was bad with the 3 things. Crohns, as yet undiagnosed fully but probable WG as I am ANCA + and have lung involvement plus I have a long term back problem at L4 L5.

    I wish you all the very best and will update as and when I can start.

  • Hi Tina, I have been researching this and habe found someone who has a lot of experience and has helped many in sourcing the oil. It will be a high THC oil blended with coconut oil and taken both rectally and orally. His own wife suffered with Crohn's and is now 2 years med free. I obviously can't disclose the person on a public forum but his advice has been great and I hope to be able to start this within the next 2 weeks and I will do a day by day blog. I am personally not worried about being caught as I feel I am a prisoner on prescription anyway so I don't feel I have much to lose but I understand that is a personal choice.

    I just think that it would be remiss of me not to try an alternative way and I hope to be able to report that I have some positive things to say.

    Wouldn't it be wonderful if it does help !

  • Thanks for the post. Having been recently (Apr 2016) diagnosed with small vein vasculitis, I am intrigued by your post and have some question, if I may.

    Are you suggesting that CBD oils will suppress the immune system naturally, or are you saying it is a kinder way to deal with the symptoms?

    Also what does THC stand for?

    Thanks

  • I am not saying anything as yet but the main thrust is that cannabis oil is full of cannabinoids and ours own brain has more receptors to those than any other. It has been proven to reduce inflammation and we all have higher CRP factor when we are in flare. It is also a pain reliever, muscle relaxant and so much more. I wish I had the answers you are looking for but I habe to be careful in what I say as I don't want to lead anyone into anything that they don't think is right for them.

    For me, I feel I have gone through enough of the toxic meds yet I am no better in reality, I just seem to be adding more medications to an already huge list, these are not cures but are treating symptoms. I believe that I owe it to myself to try another way. I had a close friend who had the most virulent form of MS and although he died, he had several years of huge relief from his pain and suffering but that was through smoking it. I don't want to smoke it so am going for the oil. I have been very lucky in finding "help" on Facebook. I will be taking it mixed in coconut oil and rectally at first then orally as well. I want to start gently as I don't want to feel high as such. I will update as and when this happens and will maybe write a blog.

    I hope that it does help. I don't want to make miraculous claims but all I am in a guy who is sick and will try nearly anything to feel better.

    Hoping you all enjoy the bank holidays

  • here is a website that I came across. Might be interesting. All I know is that cannabis is a miracle drug and lots of studies are being done.

    quora.com/will-cannibis-hur...

  • Tetrahydrocannibinol is one of the many active chemicals in cannibus. The beauty of this plant is it does SO many things some of which include anti- inflammatory without immune suppression. It makes the cells behave properly so they don't attack themselves. It also builds bone for those with osteoporosis like myself, coats nerves and helps in production of myelin around the nerves, gets rid of inflammation in the joints, is calming for those with anxiety. It helps with seizures of all types as well. Too many benefits to list. There are a lot of studies in countries that use plants on a regular basis for medicine. I know Isreal has some great published studies and there are a few being done in the US in states that allow it. Another great resource is looking up certified cannibus suppliers. Many have great information online or links to studies. There are NO documented deaths from using this plant and if used properly no side effects except drowsiness (which many medicines cause as well) in people that use high doses for certain things. Generally speaking those people are so few it's almost not worth mentioning. The only obvious reason for the governmental push back is this plant does so much it will put a huge financial drain on the pharmaceutical companies who pad the pockets of all our government held offices.

  • Spelled it wrong by mistake. It's tetrahydrocannabinol.

  • There is no evidence than cannabis or cannabis oil or cannabinoids cure anything, be it auto-immune diseases or cancer, but they can relieve the symptoms. There is massive evidence of the harm done by cannabis in inducing psychotic states such as schizophrenia. If it was all so easy, the pharma companies would be cashing on this. Many of the modern drugs are derived from opium and cocaine.

    Nobody disputes the harmful effects of high dose/long term steroids, but in the short term they save lives. Until the discovery of glucocorticosteroids in the 1940s, everyone with ANCA vasculitis died within months or a year or two. Steroids changed this, but people died due to the side effects of long term high dose steroids. This changed in the 1970s with the introduction of cyclophosphamide. This brought the disease into remission and reduced dependance on steroids. Other, less toxic drugs have been developed since then. The "biologics" - manufactured antibodies - such as rituximab, are targeted to affect only the relevant part of the immune system and have proved to be highly effective in most, but not all cases.

    Immune suppression is not ideal. Immunomodulation is the ideal - restoring the body's own regulatory system. Various projects along these lines are currently being trialled.

    Back to Jools & his problems. Unfortunately, many auto-immune diseases cause a lot of damage, such as to the gut and the nervous system, as well as the more obvious kidney/lung etc damage. This is not always recognised and in many cases the damage is permanent and irreversible, so although it might be possible to alleviate some or all of the symptoms, unfortunately even the fanciest most expensive drug or the most miraculous "natural" cure cannot bring dead kidney, lung, gut or nerve tissues back to life.

  • Hi Jools,

    I haven't looked into Cannabis oil myself but am unsure that there is any hard medical evidence that it reduces inflamation ( CRP ).

    There is no cure for Vasculitis but no one yet fully understands the different mechanisms for the 20 different variants. The best guess is a genetic predisposition ( multiple genes are involved ) coupled with an environmental factor ( infection, stress etc ). Until a cure can be found then the best we have is immunosupressants to help treat the disease and hopefully gain remission.

    There is no doubt that there is risk attached to immunosupressants but that has to be seen in the context of the risk of the underlying disease. Before the advent of Prednislone et al Vasculitis was a death sentence, even now the 1 and 5 year survival rates for ANCA associated Vasculitis are worse than breast and prostate cancer. I am unsure what conditions you mean when you say that immunosupressants can lead to " many other and worse diseases ", can you give examples or cite the sources of this?

    Vasculitis is a horrible disease and there can be a significant burden associated with the treatments although I have taken Pred, MTX, MMF and am now on Infliximab infusions thankfully without any significant side effects from any of them. At the end of the day you have to decide what is right for you but I would urge patients not to give up " conventional " medications and take something that hasn't been proved to work in treating Vasculitis based on the anecdotal evidence of people that they have spoken to.

  • If you only read the instructions on the many immunosuppressive drugs such as the one that is said to be least damaging then you will see it can cause lymphomas, do harm even at DNA level and can actually kill you. I habe yet to see one death attributed to cannabis although I do know of the psychoses. I am not advocating use by anyone but I feel I have to at least explore this.

    The prednisolone alone causes loss of bone mass, cataracts, liver and kidney problems. These drugs are damaging but they work. It is a case of weighing up the pros against the cons and deciding if you have any real choice.

    John, as for the pharma companies, I have learned not to trust them. It's my personal opinion that they are not looking to cure but rather to treat symptoms and one only has to look at the many thousands of remedies to treat the common cold. I AM cynical because I have learned to be so. The use of many of the biologic drugs has no long term data and it's flying in the dark in reality. I hate the fact that I have to stay out of the sun now. That really sits badly with me. I am just a guy who is trying his own experiments is all. I have been on steroids close to 9 years and been on many differing immunosuppressive drugs. I am in a great deal of pain and if I can only achieve some relief from pain then I will be happy with that.

    I have never been one to just blindly accept taking a drug because I am to,d to do so. When it was just the Crohns, I was scorned for looking up the information on azathioprine and asking questions. I was told that if I wanted to remain I'll then don't take them. It was not a good way to talk to someone

  • Hi Jools

    If I may, I would like to ask you about the source for your statement above 'even now the 1 and 5 year survival rates for ANCA associated Vasculitis are worse than breast and prostate cancer'. I am recently diagnosed ANCA +ve with CSS, and my consultant is talking along the lines of remission, full recovery and maybe just a few years off my overall expected life span. As you can imagine, your statement has me quite concerned and I would like to understand more about its derivation. Perhaps I am reading it out of context/not understanding?

    Thanks

    Steve

  • Hi Steve,

    It was me that quoted that statistic, not Jools. I didn't mean to unduly alarm but point out that Vasculitis was a " serious " illness that needed prompt, effective treatment.

    The problem with Vasculitis is late diagnosis and end organ damage plus ineffective treatment from Consultants who don't have a good knowledge base. The survival rates for prostate and breast cancer have improved recently as well.

    Your Consultant is right, if caught early and treated promptly and efficiently then there is a very good chance of remission and " normal " life with ANCA associated Vasculitis. Unfortunately a small percentage of patients have refractory disease which can be difficult to treat. The main problem lies with patients who's disease isn't treated effectively leading to the worse survival rates.

    I hope that clears that up, I was just very concerned that people didn't think that Cannabis oil was an effective treatment for a potentially life threatening illness. Sorry I have alarmed you unnecessarily.

  • Hi Keyes,

    Thank you for pointing out my mistake (and apologies Jools).

    Your explanation has indeed put my mind at rest. Understanding this makes me appreciate how lucky I was to have benefited from a rapid diagnosis.

    Thanks again

    Steve

  • THC isn't a cure.but it is what it is... Natural. And all the pharmaceutical companies overlook it cause there is no money in it. Cause opium and cocain are worth more. I to feel prisoner to these meds they prescribe. And am looking for alternatives. Still yet to try the cbd oil. But already know it will work for my pain. But yet still getting narcotics from the doc.... Good system..

  • Could you contact me by email please? My address is: mgtrob@talktalk.net

  • I was so interested to read your post. I am currently suffering a flare of my vasculitis with painful leg ulceration and nerve pain. Unfortunately I'm back on increased dose prednisolone. I have been making my own comfrey ointment with I think some improvement with pain and inflammation. Comfrey is another powerful plant with anti inflammatory effects. I have also read about cannabis oil and saw a you tube video about its benefits. Its definitely worth a go,, I would be grateful if you could keep me posted. I totally agree that this condition has so many un answered questions and variations that not even the experts really know how a patient will react to treatment and what is best. You only have to look at things like the use of Manuka honey which after clinical trials showed this is great for ulceration. I too hate all these medications that I'm taking and would love to try and cure myself. Please let me know how things go and if you know of any other sufferers who are trying alternative things.. I think we all have to help and support each other with this horrible condition....

    Johanna

  • I am pleasantly surprised that the OP wasn't deleted and that we can at least discuss this.

    I hope to start my first oil sometime in the next two weeks as the problem is sourcing it. It will be a high THC oil so I will keep you all updated how it goes. I don't think I have anything to lose. Thanks

  • Why shouldn't you be allowed to discuss it? You are entitled to your opinion just as I am entitled to point out that there is currently no evidence to support the use of Cannabis oil in the treatment of Vasculitis.

    I have to be very aware of what I post, we try to give advice that is evevidenced based and take direction from the Vasculitis expert Consultants who are leaders in the field. I could try jelly babies and post that they make me feel much better and have helped my symptoms. The problem is that I have no scientific basis for this, I didn't conduct a double blinded RCT, I have bias ( I really want Jelly babies to work ) and I have taken no account of the placebo effect.

    Many people that come on these sites are very unwell, have serious disease, suffer side effects from treatment and just want anything that will help. We owe it to them to give the best, most up to date, scientific advice possible. Who is responsible if people read threads such as these, come off medication and try things like cannabis oil with potentially fatal consequences.?

    So sure, try cannabis oil and then come back and say it's wonderful, the problem being we know nothing about you, your underlying condition, what other drugs you are taking etc or whether you are just a front for a cannabis oil manufacturer.

  • Just to be clear. I will be continuing with current meds. It would be foolhardy of me to stop and I like to think that I maybe daft but am not stupid. I know how I am now and so I will be able to gauge if I do see or feel anything different. I was having a discussion with a fellow Crohn's sufferer and she said she started to feel much more able to control the awful cramping and the blood loss stopped. She was on 50 of pred and 225 of Azathioprine and was on infliximab.

    After 6 weeks she is now on 100 of azathioprine and 15 of pred. My only concern is that I really don't want to feel high as I was led to believe that the oil that helped was high CBD and virtually no THC. I have since found out that the THC content is very high, in the oil that has shown good results with cancers and inflammatory disease. I am being given advice to start on a very low dose so that I avoid the feeling of feeling high. I've talked about this with my specialist and to my surprise there was no anger or anti stance. I am not planning to stop my meds and expect this to be cure all. If I am able to just feel better then I will be pretty happy at that as, right now, I am very low and struggling to do the basics of ablutions etc.

  • i buy cannabis oil from amazon uk, it is very expensive, i have had a kidney transplant and the rejection drugs are causing my gums to grow over my teeth, or trying to, it is difficult for me to eat anything hard as it gets trapped under the gum and then causes inflammation, which then causes the gum to grow more, i find the cbd oil, when my gums are inflamed helps to stop it, if i had the money i would make my own. im sure it will help you xxxx i live in the uk and only the cbd oil is legal. i wish they would hurry up and change the law, we usually follow america, so maybe eventually we will be able to buy it without concern. obviously big pharma will not like this xxx GOOD LUCK GO FOR IT

  • lol all very good points. To each their own. Whatever floats your boat. Lets let the scientists and doctors decide. And that I've seen some major miracles with the CBd oils with people who suffer from seizure's so here's to having high hopes. No pun intended.

  • I have recently had a cousin of mine diagnosed with Vasculitis and the prospect of prednisone and other autoimmune suppressants does not sit so well. Has anyone treated this disease with cbd's and if so, what have been the results/effects? Especilly vs the pharma treatments. ANY info is greatly appreciated, and thank you in advance!

    TOJW

  • I will be reading these posts with interest as my GP has just ordered me medical marijuana which is legal, although expensive, in Canada now. She's hoping for me it will help with pain and promote appetite. I've read from quite a few that just the hemp oil has been beneficial for pain.

    Cheers

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