New to the site, familiar with PsA

Welcome Greetings and Introductions
1

Hello all,

I'm 27, I've had joint and back pain for as long as I can remember. The skin issues starting popping up about the time I was a freshman in high school. I remember one morning when I was getting ready for school and my mom said whats that on your shoulders? It was skin flakes, my shoulders looked like snow capped mountains! I also quit sports that year because of the pain. I've never been one to complain and since the pain was familiar I just though that I was weaker than others. I especially thought that when I would go to doctors(Spine specialist, GPs, Neurologists) and they would say that there is nothing wrong with me after going through their motions an looking at X-rays. Boy were they naive and couldn't put two and two together. The rest of high school was accompanied with pain and depression. I soon started smoking Marijuana. I loved the experience because I wouldn't feel pain when I did smoke it. Little did I know that I had a serious condition and it was relieving that condition. It wasn't until my GF(now fiance, she is so supportive) complained enough about the skin flakes that I went to the dermatologist(I hate going to the doctor). He confirmed I had Psoriasis and asked if I ever had any joint pain and I thought that he was reading my mind. He referred me to a rheumatologist and he confirmed the PsA. So I took a ride on the medi-goround and tried mobic(this dried my knuckles out till they cracked and bled), MTX(pills), etadolac, and everything in between. I'm now taking the Simponi auto inject, been taking for the last year or so. The day after the first shot, I felt like I could run through a brick wall with no problem, it was the best I felt in my entire life. Unfortunately its been a slow downhill experience since then. After about 6 months I started to feel the PsA again. I've been to so many doctors and I lost confidence in them a long time ago. I still listen to them and I still take the drugs they prescribe but I really don't like pills or shots or even staying on a constant rotation of medications. I just want a normal life like all of you but its hard to keep battling every day when you've been doing it for 27 years. I try to relate the pain to help others understand, but that's hard too. Most people just give you a sad, blank stare and say "awww man, that sucks." Most times I don't even know what to tell my doctor, my sense of pain is so skewed compared others that the 1-10 pain chart is laughable. I never realized my level of pain until one day I tripped at work and dislocated my finger. I only felt minor pain and almost didn't even look at my hand. Good thing I did because I wouldn't have been able to use it. I popped it back in place and kept working. Most people say they would have gone to the hospital, but if I did that for my pain I'd be a live in patient. I recently started smoking Marijuana again and realized the amount of relief that it gave me. I felt like I was walking on cushions afterward. I cannot suggest you try this because of the legal issues or the potential to lose your job(just lost mine to random drug test, wish I didn't have to decide between pain and a job). On a good note they are actually linking some of the active chemicals in Cannabis to relieve inflammation and have positive effects on the immune system. Cannabis varieties . If you go to that link look at the strain Bediol. It explains some of the effects of CBD on the immune system. Again, unless you live in certain legal areas AND you talk to your doctor then please take this only as information and not a suggestion. I have had positive results for pain management with certain strains. I live in Texas and can only get what's available but I'm excited to see whats going on in Colorado and what scientific studies will result from the recent changes in laws. Anyways, trying to think about what biologic to try next. Still kind of scared of them because you just don't know whats going to happen. Also we're all kind of the test subjects. What are the effects 30, 40, 50 years down the line. Just wish the decisions we had to make were a little easier.

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Welcome, Landon! I hope you find this a good place for information and support. There is a search bar at the top right where you can track down some of the discussions we’ve had about marijuana. I certainly hear you about chronic pain and the effect it has on every aspect of life. I do feel fortunate to be retired: I’m not sure how well I’d cope with this disease if I had to work as well. I take my hat off to those that do.
I hope that you will find a new biologic that gives you the relief that you need to carry on with your life in a more-or-less normal manner. I know that the question of “the effects 30, 40, 50 years down the line” is worrying. The same, however, could be said about MJ, LOL. In the meanwhile you know for sure what the risks of uncontrolled PsA are. For me, it’s a no brainer.
Again, welcome, Landon. I’m glad you found us, but sorry you had to come looking.

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Welcome Landon. Newish here myself and only just started on the "Medigoround" (I love that term, do you mind if I steal it?) I have just come home from work here in Australia. We are in heatwave at the moment, so I am unsure whether my current relief of symptoms is due to the extreme heat or my recent MTX double dose.

What I will say to Seenie is- I am so struggling with work!. I work in manufacturing and have understanding bosses, and I work in an office, but as a trainer I am required to wear safety boots with steel toes, and go walking on the concrete factory floor. Our complex is spread over acres (literally) and going from one office space to another can be a 20 minute walk (literally) Most days I come home in so much pain all I want to do is curl in a ball and die. I am not sure what gives me the strength to keep going. I think the next few months will determine if I stick it out or quit. I would like to make it until July and reach my 20 year anniversary though.

I hear you Landon on the use of MJ, Ahh I remember back to my rebellious teenage years (yes - quite a while ago) and the delicious state of relaxation. Random drug tests would however do me in too. With no job I would have no private insurance and be reliant on our Medicare system. Na - maybe not worth the risk for me.



Seenie said:

I do feel fortunate to be retired: I'm not sure how well I'd cope with this disease if I had to work as well. I take my hat off to those that do.
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Welcome Landon :slight_smile: Here’s hoping you find support on this site…it can be a lonely road when you’re always in pain. This site has given me friendship, understanding, humour and information just when I’ve needed it most, love these guys :slight_smile:

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Thanks for all your replies, this really is a great site. I've seen some great things on here already and I'm sure there are more to come.

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Welcome, Landon. We call get frustrated sometimes. I've been on biologics for years with no noticeably ill effects from them. And Seenie is right-we might not know the effects of 20 years or more biologic use but we don't really know the effects of 20 or more years of MJ use.

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Welcome! I am new here as well and it’s really nice to have the support. No one in my life really understands how pain affects you. I also get the “well that sucks” response a lot. I don’t usually talk about it because it bugs me how people react. They either don’t know what works say and I feel bad for making them feel awkward. Or they go off the deep end and act like I am about to break and don’t let me do anything. It’s easier to just not talk about it to most people.

I hope you can find what works for you to get some relief. I understand being burnt out over all of the medications and pain.

I live in Colorado, so this is a hot topic here, while everyone in the country watches to see how it works out. It’s been good and boring so far, which is what I expected. I expected the rumors, and they are going around.

I have been tossing around the idea of trying it for my pain. Expecially since they have a lot of options for taking it besides smoking now days, I was never a good smoker, even in my younger years when I smoked pot more then I should admit.

But when it comes down to it, it is still illegal federally and that worries me. I also have kids, so I worry about being able to care for them if I where to take it, and if they where to find anything and eat it, scares me too much. I don’t think it is right for me right now, maybe in the future. If I get a kid free and safe opportunity to try it sometime soon, I will.

I am interested to see how my state does with all of this, it’s a pretty big change. I voted for it, simply from a tax payer cost viewpoint. It costs a lot to chase down and jail potheads who just want to sit around and eat cheetos. They aren’t hurting anyone. Also, taxing retail pot, and the tourisum potential, makes a lot of sense for our local economy. There’s been a boom of 24 hour donut shops, and the like, opening! Haha! It’s supporting small business!

Anyways, that’s my 2 cents about it. Good luck and welcome!

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Welcome Landon, I am sure you will find lots of support, advice and education on this site. I hope this site helps you and your PsA journey

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If I lived in Colorado that would be my med of choice. I'm trying to move there but need a job first. If you are going to do it then look for a strain of Cannabis that is high in CBD. I couldn't really tell you which one as there are over 400 strains. I know that if you go to realmofcaringfoundation.org, they specialize in strains that are high in CBD. http://ncsm.nl/english/the-dutch-medicinal-cannabis-program/available-varieties. That webiste lists a strain called Bediol that is high in CBD. It's showing to have effects on the immune system. Which is what is attacking us. Also if you choose to use it make sure your job doesn't do random drug tests. That's how I lost my job, finding effective pain relief. To me advil, alieve, etc. are as effective as Flintstone vitamins.

NotGivingUpMyLife said:



I have been tossing around the idea of trying it for my pain. Expecially since they have a lot of options for taking it besides smoking now days, I was never a good smoker, even in my younger years when I smoked pot more then I should admit.

But when it comes down to it, it is still illegal federally and that worries me. I also have kids, so I worry about being able to care for them if I where to take it, and if they where to find anything and eat it, scares me too much.
Also, taxing retail pot, and the tourisum potential, makes a lot of sense for our local economy. There's been a boom of 24 hour donut shops, and the like, opening! Haha! It's supporting small business!
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Landon, you do know that pain relief (however you get it) is one thing, and disease modification is another. The risk of joint destruction is very real with PsA. To prevent that, my money’s on the DMARDs and the biologics.

And I am so so sorry you lost your job the way you did.

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I do agree with you whole-heartedly Seenie. I would much rather solve the problem than just use band-aids. I know that the medical industry is and always will be on the pharmaceutical/biologic side of things. But until I can take a shot or pill or smoke a joint that solves my problems for good then I wont say by any means that there is a solution with biologics or Marijuana. My doctor was hesitant for months before diagnosing me with PsA, even though my pain and skin condition was very real for 15+ years, because there was "no visible joint damage" in my x-rays. Well I had been using Cannabis for the latter few of those years. Whose to say that wasn't preventing the damage. I know that's not enough scientific proof but its enough for me to support the studies that could prove it. Also since I live in Texas and I can only get what is available. There are 400+ strains, and Cannabis has 70 active ingredients that vary in levels of each strain. With that kind of spectrum it would take years to find the right one without direction. Also without the proper studies we cant rule that out. The following link is a video by Dr. Sanjay Gupta of CNN. It's 43 mins long and isn't directly related to our issues BUT it has been proven to be a miracle drug for people with Dravet syndrome, going through Chemo, Tourette's and even Rheumatoid Arthritis. I urge everyone to watch this video, especially if you are on the fence or against Medical or Recreational Marijuana. It's unbiased(they even talk about the dangers) and extremely informative. Careful though it can be a tearjerker at times. http://www.youtube.com/watch?v=vyf-ffoatHg

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What a bunch of crap. You don't need visible joint damage to be diagnosed, in fact, by then it's late! Sorry, I'm just mad at your doctor.

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Me too, he was slow in his processes. I'm seeing a different one now, she's much more caring .

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Interesting stuff, Landon. And I’m glad you have a doctor who is a bit better informed now. If we were to collate all of the doctor horror stories, we’d have quite a book.

One of the first things that I usually recommend to new members is the PsA book that’s in Book Reviews (above). The Kindle version is a bargain! Sounds like your first rheumatologist could use a copy. :wink:

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Lol thanks, I'll be sure to check it out.

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Very interesting and informative

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Yup they did some pretty extensive studies of Cannabidiol (CBD) back in the 80's. They learned that it did indeed lower the primary humoral immune response while THC did not. So yeah you won't get as high on Bediol or any of the Indica strains, you might even get a bit hyper. Couple them with any of the immosupressive drugs, you are also likley to get very sick with a minor infection. How the "caregivers" translated the lowering into anti-inflammatory response is beyond me. I suppose if you smoke enough weed, you can so eliminate the immune response, you feel nothing and with out a pain/immune response you will indeed not have much inflammation (you will still have plenty of PsA and joint erosions etc) You of course will not have a thymus response, which stops your brain from working too (especially memory) This is one of the reasons it works so well with cancer patients it suppresses all of their natural body responses. Not a problem if you are likley going to die anyway or stop after treatment. It becomes a problem when you are working age and likely to live a near normal life span.

Actually we do know the long term effects of using lots of weed. It totally screws up your brain. Smoke all the weed one wants but don't call it medical. The entire MMJ business is what it is - recreational drug use/abuse with lots of rationalization.

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I respect your opinion but I have to disagree Lamb. They are doing extensive research in Israel and parts of Europe that are proving to be very beneficial for all types of diseases and has been called a "neglected pharmacological treasure trove" by the British Journal of Pharmacology. We have to unlock these mysteries before we start calling people who need MMJ "drug abusers". Also in the 80's medical technology was nowhere near what it is now and only 6% of studies since then have been focused on the benefits of Marijuana. The rest focus on the harm, to me that seems like a lot of room for skewed results. Just because it doesn't work for you doesn't mean it cant work for others. You should know this especially because we're all dealing with that in the biologics area. With 500 plus constituents in MJ and only knowing what 70 generally do and only knowing a whole lot about a handful of the active ingredients I'd hardly call that enough information to rule it out of the medical field. I could care less about getting high because I enjoy being productive and learning. I'm looking elsewhere for solutions because at my age and the rate that biologics wear off for me, there will be a time in my life that I've gone through them all. By the way the studies that say it "totally screws up your brain" are mostly funded by the government who rarely admits they are wrong. Other independent studies have shown that MJ may be beneficial in preventing Alzheimer's. So can we please get this out in the open and study it for real and get the truth out there. I guarantee you if I'm wrong or support the wrong side and the truth comes out I'll whole heartedly admit it. But in this case I think they're really on to something. Please watch the video I linked above. MJ is literally saving peoples lives and it is criminal that we keep their medicine from them. I do agree that people abuse the system, I do not support that because they are tainting the MMJ image.

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Yes yes I know the entire scientific community is part of a massive conspriacy. Sady everytime a cannibis based drug has been made or extracted or involved any of three active compound its efficaceynhas been extremly limited. Of the nearly 30 drugs using cannibis products that made it beyondPhase I trials exactly 0 are still available (due to lack of interest.)

Sativex has recently been approved for treating a muscle spasm involved with MS. It works by of all things messing with the Thymus response in the brain (screwing up your brain) After Phase three trials it was ultimatley appoved as a compassionate drug not to be used more than 6 mos. because of the thymus damage.

The "government" funds a very small part of any medical research going on anywhere in the world. And even at that they have no power over peer reviewed studies.

Like I say use it enjoy it do what ever you want with it. The only commonality with it is that unless its smoked or ingested (the indocin strains seem to only work if smoked) The drug has been extensivley studies for dang near 100 years now. They still haven't got anything solid. There isn't a pharmaceutical company in the world that hasn't or isn't studying it. (nor tobacco company) But the funny thing is take it out of the MJ shops and it doesn't hold up. Disease levels are just as high in countries with it as those without it. Interestingly enough some of the more recent entries into the "arthritis arena" come from Holland. There is very little interest in the MMJ community in actually developing good therapy. Their research almost without exception (including the links you provided) stops when going anywhere beyond using actual weed.

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I used to be with you on this because of the abuse of the system but after seeing the drastic differences in video evidence, especially the one I linked above you cant deny that it is extremely beneficial to them. I cried for little Charlotte while she was having seizures 300 times a week and the drugs that were prescribed to her were making her life even worse. I cried again, tears of joy when I hear her speak full sentences and meeting her mom for the first time in a normal setting because she wasn't convulsing. It is that way because of some dedicated individuals providing the research and taking the risks of being persecuted. Go to www.realmofcaringfoundation.org. Those are the guys that solved Charlotte's problem, among others. When I see undeniable medical research from all spectrums of the medical field against it, I'll drop it and move on to what may be the next solution. Until thin we're just going to have to agree to disagree.