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Living with Psoriatic Arthritis (PsA)

Medical Marijuana Journey


#21


annroberts54 said:


I am interested in your itching. Where was it and how bad was it? And how did you find out it was because of your PsA? I have had about 8 years of my arms itching like crazy all the time. Lyrica did work against it but I decided I wanted off pharmaceuticals when ever possible. I am using MJ for pain and I am sitting here realizing that I haven't been itching for awhile. But I am also now wondering if my itching was just another clue to my diagnosis
TVP said:

I have commented previously of the immediate relief I got from the horrible itching (pruritis, presumably)I suffer from in my particular hell of PsA through marijuana. I know there are many ways pot can help us and at 64, disabled by my PsA, I think we can dispense with the hand-wringing and worrying about the evil "maryjane". I can't use the biologics (TB risk) and mtx is out (internal damage) so medically that leaves me with diclofenac misoprost which screws up digestion some. So, the point is, if something as relatively benign as pot helps then I, for one, have no issues, except perhaps expense. [$300/oz.]. At least pot doesn't wreak havoc on the various bodily functions that all the other palliatives our doctors prescribe. And mentally? For me,a good early evening flare-up is as bad for me mentally as it is physically (what's the difference?)and pot eases the symptoms. And that's all I have to say about that.

#22

I had itching skin for decades. When I complained about it to the doctor, all I ever got was “moisturize”. When I started Enbrel, my skin stopped itching, so there is no doubt in my mind that it was psoriasis. Interesting that the MM seems to work for itching as well as pain.


#23

The itching is definitely yet another symptom of our very fine disease. Pruritis is what it is and because it isn’t a topical condition all the salves and nostrums were useless for me. i still get isolated itching that can be maddening, especially the bottom of my feet when hurtling down the highway. But bottom line, which can also itch, the pot puts the PsA into perspective. You can’t quote me on that.


#24

Nic.Pat - thank you so much for your post! It was so informative. (Your fingers must be killing you after all that typing!) I’m so sorry for all you’ve had to go through.
I used to get optic neuritis and the pain was so crazy bad; the ONLY thing that helped was "mj."
Now I’m wondering about it for my PsA, too. I live in PA, though. :frowning:
Please keep us updated on your journey. You’ll be our MM poster child! :slight_smile:


#25

TVP, you are absolutely right about the pruritis. But I hadn’t been diagnosed, so when the doc said “moisturize” and it helped only minimally, of course I thought that it was a case of my not having moisturized enough! Dooooohhhhh. And the “snow” on the insides of all my dark clothes … that was just bad grooming too. So I quit complaining to the doc. What a mistake.

Trishydee, I agree, Nic.Pat’s post is extremely interesting and informative. And I live in the same jurisdiction that she does, so I’m taking careful note! Indeed. Nic.Pat should be nominated for an award.


#26

Hello,

I have an update on my medical marijuana journey. After waiting months from having the prescription written to getting the prescription filled - I am rolling now. The asthma inhaler vaporizer - amazing! No smell whatsoever. It comes with a USB charger, and no one knows it is for.

The cost of medical marijuana is more expensive than the stuff my recreational user friend buys. It seems to average around $12.50 a gram. My prescription is for 1 gram a day. That sounds expensive, and compared to opioids and it is. BUT, like with Oxy Codone and the others, I only use it when I cannot bare the pain. So rarely. It is a comfort to know it is there when I need it.

I purchased a locked lid/container with the drug - to keep tempted children/teenagers out of it. That was another $16. Reusable

I received a card with my order (all online, delivered by Canada Post) that explains the prescription, dosage and Doctor to any police that may question me. NOT a license, but explanation. There is no license. My prescription is only valid until the end of January - because I waited so long while MedReleaf was out of stock - so the Doctor needs to re-issue with a longer validity date. He left it short to confirm the dosage was sufficient. It seems ok for now. I have not had a bad flare since the medicine arrived. I have only used it twice so far (curiosity got me) - however I am sore today. We shall see if I use it tonight.

Driving - the Doctor says I can drive if I am not impaired. However, if I get into an accident or a policeman finds me impaired I could be charged. So I am not using and driving at this point. I am just not familiar enough with its effects on me.

A puff or two on the vaporizer lasts about 2 hours. I feel like I had a glass of wine. I can increase the dosage, number of puffs as needed up to 1 gram a day - so we shall see how long it can last. As long as I can stop writhing and sleep, I will be happy.

Munchies - none yet. It does seem to make all food taste better. Seriously, a new appreciation for salad? Everything just tastes great - but perhaps I am worried about weight gain, but so far no munchies.

DOES IT WORK? I know that is what you want to hear about. So far, I have used on mild - moderate pain days and it worked - I will update on a day with a serious flare - the kind that would leave me in bed crying on a heating pad. Hopefully not soon.

My 17 year old son thinks it is better than anything else I have. He does not approve of drugs, or alcohol for that matter - but he says the difference is worth it. He isn't afraid of me being addicted or overdosing. He also commented that when I took the pills, I didn't seem to care about anything. I was indifferent - and that bothered him a lot. So he is happy that I have this option now.

Any questions - contact me.

Nic.Pat


#27

Wow, Nic.Pat. That is really really interesting. It must be so nice to have something on hand that will give you relief and not make you feel like a zombie.

You (we) are fortunate to live in a jurisdiction where this is a legal option. Thank you so much for updating us!


#28

Thank you for the great information. I live in Oregon and my doctor has signed for me to apply for a medical MJ card here. I take indomethycin for pain now, and I'm sure MJ has fewer long-term side effects.

My question is this: does medical MJ stop the progression of psoriatic arthritis? I know MJ will help with pain control.

So, if I use medical MJ, I won't need to take methotrexate because the MJ is controlling the disease?

Thank you.

Ann


#29

Oh Ann, if only!
Like other pain meds, MJ is symptomatic relief, not disease therapy. The only therapies that have been proven to control or slow the progression of our dastardly disease are the DMARDs (Disease Modifying Anti-rheumatic Drugs – MTX, Sulfasalazine, Hydroxychloroquine, Leflunomide) and the Biologics (Enbrel, Humira, Remicade, etc). Anything else – anti-inflammatories, steroids, pain killers, diet and other complementary therapies – addresses only symptoms. Here’s a piece from our Newbies’ Guide:
http://www.livingwithpsoriaticarthritis.org/forum/topics/symptom-control-vs-disease-control-1
If MJ could stop the progression of PsA, this board would be very different than it is.


#30

Not trying to be rude; MTX, Sulfasalazine, and plaquenil how NOT shown any efficacy slowing down or preventing bone damage in its typical dose. Leflunomide has shown some efficacy and slowing down the disease.

Now I am not saying you shouldn’t try these drugs; MTX may bring you symptomatic relief and plaquenil was being studied for OA in hands…


#31

You’re not being rude, Mataribot, you bring up an excellent point. I was going to mention that there are serious doubts about what most of the DMARDs do, but decided to keep it simple because Ann’s question was about MJ. Despite doubts about their efficacy, the DMARDs are still the first line of defense for most rheumatologists in their treatment of PsA. As time goes on, though, the evidence is becoming increasingly clear that biologics are superior to DMARDs in slowing disease progression. Thanks for bringing this up.


#32

DMARDs at least have some impact on the disease process, whereas MJ is palliative. Not saying it's a bad idea as an adjunct for pain management for people without substance dependence/abuse histories, especially in Nic.Pat's case (what a journey!), but it's not going to improve hand and foot symptoms like MTX or one of the other DMARDs.


#33

Hi,

My decision to use MJ was not based on finding a cure, or slowing or stopping the progression of the disease. I wish it were. I still take indomethacin and Enbrel. MJ is strictly a less addictive, less incapacitating way of dealing with the pain problem. If indomethacin can control your pain - fantastic! It has only ever helped with the smaller joints, toes and fingers etc. My spine is another issue altogether. Hopefully, someday the medications will control my disease more effectively, but so far I am not under control.

The MJ producers and advocates say that MJ can reduce inflammation - I haven't been inflamed enough to notice this effect yet. So far it has just reduced the pain and the anxiety that comes with the pain. I seem to stress about how bad I hurt, how I will continue on with my day and duties as a mother and employee. I never knew how much until that stress was taken away.

thanks for listening.

Nic.Pat


#34

So, if no one is having any success in slowing down the disease, you are taking DMARDS and biologics for pain and only for pain?

Is there research on which, if any, meds reduce the progression of the disease? Leflunomide was mentioned.

I know this may not be taken well, but I'll say that my doc is giving me antivirals to kill off active parvo virus I have, which might be a cause RA . I intend to continue with his approach as well as follow what my rheum recommends.


#35

Biologics have been shown to slow the progression of the disease.

anngreen said:

So, if no one is having any success in slowing down the disease, you are taking DMARDS and biologics for pain and only for pain?

Is there research on which, if any, meds reduce the progression of the disease? Leflunomide was mentioned.

I know this may not be taken well, but I'll say that my doc is giving me antivirals to kill off active parvo virus I have, which might be a cause RA . I intend to continue with his approach as well as follow what my rheum recommends.


#36

Ann, the DMARDs (mtx, leflunomide, plaquenil, sulfasalazine) and the biologics (Enbrel etc.) slow the disease, and therefore dampen the inflammation and the pain it causes. When the disease is slowed, your joints are also less prone to damage. There are some doubts about how effective the DMARDs are at doing this in PsA, but we do know that the biologics (when the right one is found) work well. They do not cure the disease, but they do put the brakes on it.



NSAIDs, tylenol, painkillers and the like only deal with pain. But the disease carries on doing its dirty work, at whatever rate it happens to be moving. For some, that is slow and can take years to cause damage. For others, PsA can trash joints remarkably quickly. Because pain is not a good indicator of how severe your disease is, only your rheumatologist can make that call.



Inflammation hurts, and if the inflammation can be reduced, so will the pain. Joint damage is painful, but DMARDs and biologics can’t fix what’s already broken. That’s why many of us on DMARDs or biologics continue to take medications for pain.


#37

I have an excellent example of the above: I have been in a flare for about 4 1/2- 5 years. I currently take MTX, Sulfasalazine, NSAIDS, assorted meds for unrelated conditions, and when I have them Vicodin and Flexeril. I take 5 day pulse doses of prednisone once or twice a month. I used to take humira, then enbrel, then remicade. The humira and enbrel both stopped being effective for me relatively quickly. The remicade was showing very positive potential, but became too expensive for me to continue without insurance. So now what?

Now I treat the symptoms. I take the Sulfasalazine which is effective for the IBS (Inflammatory Bowel Syndrome), but doesn't do squat for the Psoriasis or PsA (for me). The MTX is surprisingly more effective than I realized for the Psoriasis, but is not halting the progression of the damage to my joints (PsA). My newest concern is that I cannot get a prescription for the flexeril or vicodin anymore because my doc in Texas will no longer call in scripts for me without seeing me again (totally reasonable), and the doc I see here in OK refuses to prescribe painkillers or muscle relaxers for any reason ever (not so reasonable). If OK would legalize medical marijuana I would love to take the stuff (to my way of thinking I'd prefer the MJ to opiates), but I likely couldn't get a prescription with my current doc anyway given his adamant refusal to acknowledge the existence of PsA and his abhorrence for anything that could possibly be addictive.

Medical MJ could potentially be a game changer for me as far as quality of life and ability be more active. I'm not going to lie here. I've smoked the stuff (granted it has been over 18 years ago), and didn't get addicted. I did get the munchies - but hey...there are worse things in life. My point here is I did not get addicted, did not feel like I couldn't function in life without it, and only did it recreationally on weekends when my ex's family got together for bonfires. MJ is not the heinous gateway drug that people like to make it out to be.

I watch with anticipation as the Federal Government and State Governments squabble over legalization, while realistically understanding that some States (OK, TX, etc) will remain staunch opposers until the bitter end simply because they are ultra conservative states and like to be bull-headed. I thank you so much for posting your journey here for the rest of us to read so that when and if the option becomes available we have at least anecdotal evidence in favor of trying it to present to our respective doctors.


#38

I hope for legalization in all states so that people can get it without a lot of resistance, i.e., having to travel to another state or get it illegally. Idk how available it is in other countries besides the US.

As far as conservatism blocking its legalization, you need to somehow convince them they might need it someday as a last resort. It sounds to me like that's what it is--something for people who aren't having success with all the other meds. I, for one, would definitely consider it if/when my pain cannot be controlled satisfactorily with biologics.

Sounds like you've had a very difficult life with PsA, Nic.Pat!


#39

This came through my news feed...

Legal 'E-spliff' helps relieve pain of MS and cancer patients - without the cannabis high

Legal 'electronic joint' developed to help ailments eased by cannabis
It will help calm, relax and ease people's pain, but will not give a 'high'
This is because it contains cannabidiol (CBD) which acts as a painkiller
Does not contain psychoactive ingredient THC which gives a 'high'

  • Product will be available to patients in France from January 2015



Read more: http://www.dailymail.co.uk/health/article-2876326/Electronic-joint-developed-help-people-multiple-sclerosis-cancer-pain-s-completely-legal.html#ixzz3PDm7KX8V
Follow us: @MailOnline on Twitter | DailyMail on Facebook

http://www.dailymail.co.uk/health/article-2876326/Electronic-joint-developed-help-people-multiple-sclerosis-cancer-pain-s-completely-legal.html


#40

Thank you all for sharing! Has anyone tried cannadiol oil? You ingest it and they say it’s legal in all 50 states because it’s derived from hemp. It’s CBD not THC so it sounds like it’d be good for PsA.