I was just diagnosed with this evil thing. I had no idea it was like this. It started a year ago after I broke my leg, and about the time the infection I developed from the surgery popped up, a couple of months after the initial operation.
So, I’m just on a fact finding mission and to hear how others might cope with this. I finally went to the specialist and he prescribed Plaquenil (Hydroxychloroquine).
I don’t think I can do this medicine. It has major side affects with one being sudden blindness! For real. I hate one pill a day for life drugs and haven’t even tried this one, not even the first pill.
I went online to Web MD and read real life reviews, and what I took away from it was to run as fast as you can from this medication. It ranged from death to irreparable blindness without warning, and a whole gaggle of bad side effects in between.
I hear there are other methods of medicine but I haven’t gotten that far yet.
I’d ideally like to think I could find some sort of natural plan but I understand this is a nasty illness with no cure.
Anyone with tips or just stories, please feel free to post them up. It may even help other people that don’t understand what’s happening to them. This is some painful stuff and it’s causing extreme fatigue and loss of appetite, too. It’s hard for me because I’ve always been active and I live alone making it worse.
Thanks for reading! I just need a little encouragement and talk with others who may have already been introduced to this nightmare.
Sorry to hear of your situation, Bro. I’ll research for the Strains/Varieties that may offer relief. Sometimes when you suffer a sudden traumatic injury such as the one you experienced, the shock to the body causes sudden “diseases”. A friend had Triple Bypass, 6 months later, Rheumatoid Arthritis. The wife slipped and fell on icy sidewalk where she worked, shattered Wrist in six/6 places, Elbow in three/3. About the same six months down the road, she developed Diabetes. Doctors explained the correlation, surprising us both. Don’t get despondent, Bro, you’ll get a handle on it, stay positive. I’ll get back to ya in a few days, SS/BW…mister
Hey G sorry to hear the news. I’m currently dealing with some osteoarthritis and impingement in my hips, I know how annoying and frustrating the pain can be. CBD used to help me but it was pricey so I never kept up but that might be worth checking out. I got a muscle salve in Seattle a year or two ago that had camphor, Thc, cbd and that helps me a lot when I’m having “flare ups” or problems with inflammation. Feel free to message me if you want to talk strains!! My life goal with cannabis is to find a plant/cultivar that can help people in situations like ours. Try to keep your head up and look on the bright side, even on the painful days.
I’m going to be running a very very interesting cbd cross soon(ish) and I would be more than happy to share anything I find worth sharing. The genetics have some tsunami and harlequin so I’m hoping I can find a good plant for pain/discomfort.
My wife has RA. Its in all of her major joints. Been through 11 surgeries in as many years. Knees, shoulder, neck, back. Last spinal fusion was 2 month ago. Shes only 50. I know it can be extremely painful. She does not want to be strung out on opiates and has kept that to an absolute minimum. She is perscribed Cymbalta and Sulfasalazine and she says she doesnt feel like shes 90 years old anymore, it does help with few if any negative side effects for her. In terms of at home rx, she is a relatively heavy toker and finds more relief from body pain from indica varieties. Had a couple runs of Master Kush that she says helps more than the other varieties I’ve grown. She is the primary reason I grow now.
My first wife had Lupus and was prescribed plaquenil and had a very hard time with it. I remember she felt horrible and worn down when she took it, sucked the life out of her IMO. She passed away 3 years ago from complications of lupus and breast cancer treatment.
I hope you can get into a good Rheumatologist to find better options than Plaquenil. And hoping maybe some others in the community here have advise and helpful strains. Be well brother.
DMSO stops the pain.
Byproduct of paper mills
Was a test done in the 50s, think 40ish people not good record keeping (no double blind, no previous medical history)
Women in her 50s died, but no cause listed, and they stopped the study.
Used extensively for race horses, thouroughbreeds
It stops pain.
Clean applicators (I use my fingers) and clean application area
Gently rub on area, less then a minute, no pain.
Down side to that, it just stops pain.
If you have pain normally moving 1 way or the other, you won’t feel it.
BUT it can still cause pain later if you use you joints more then ya normally do (suggest not skipping stones, I can tell ya from experience)
Just kills pain, doesn’t fix in any way.
I use high thc strains, make butter, take 1/2 tsp about 1 1/2 hr before bed.
I mention that, because I have it in hips and shoulders, and was flipping around every 15 minutes to find a position that didn’t hurt.
This lets me sleep through the night, which in turn “relaxes” or lets the muscles and joints rest, which makes the next day easier.
Hope it helps
Thanks again everyone! I have a lot of studying to do. Right now I’m getting by pretty good with Alieve. I read some of the stuff from above and want to continue. I’m in no way a fan of the “one pill a day” for the rest of your life. That’s just lazy medicine and doctors. The one I saw never even mentioned the chance of sudden blindness when he prescribed the medicine for me. The pharmacist was really surprised he didn’t go over all of the side effects with me.
I was diagnosed over 20 years ago and have been through every regiment pharma has to offer. Even have a shiny new hip. This is how it goes. Your immune system is haywire and its attacking the tissue in your joints with a molecule called TNF (tumor necrotic factor). This shit is like the MARSOC Raider of the blood, released to sites of trauma to fuck up foreign insurgents (bacteria, yeast, etc). You’re making battalions of this stuff during peacetime. But it’s got a job to do, and it won’t go away without a kill, so when it doesn’t find an insurgent, it does a mag dump on your joints. The only way to stop this disease is to stop this attack. Insurance companies will make you fail on every medication that doesn’t work before they will pony up for what does work, as it costs around 2 grand a month. They are called biologics, subcutaneous injections of a decoy molecule the immune system can attack instead of the synovial tissue in your joints. Humira and Enbrel are what they’re called. I can explain the mode of action more if you care to hear it, but i think you get the idea from this. These have the ability to put RA into remission and stop the AWFUL fucking pain. But before you can get it you have to fail on the disease modifiers; methotrexate and plaquenil. I have been on Humira for 18 years. It has almost no side effects once you get used to it. In the beginning though I was vulnerable to respiratory infection and had two incidents of shingles. Whatever, it was worth it to get my hands back.
It’s also better to take a low dose of prednisone than any of the NSAID’s. There are less side effects and it’s more effective for this issue. At a low maintenance dose you can avoid the side effects most people get at higher doses. I take 7-10 mg daily during a flare up. Your doctor can give you a power dose to knock down the inflamation systemically with 60mg/day for 5-7 days to help while the other meds onboard. This does a damn fine job typically for immediate relief that can last a month or a year depending on your unique biology and disease progression. DM me if you need to talk.
Forgot to mention a Rheumatologist is the only one that can prescribe those meds. Don’t be discouraged if Enbrel doesn’t work. It didn’t for me but Humira did. It’s decoy has higher affinity for bonding to the TNF molecule, thereby disabling it. One subcute shot twice a month with an injection pen. Push against skin and press the button. Easy peasy. You got this, trust me, there is hope on the horizon.
This is a huge problem with medicine these days, I know someone who got denied shoulder surgery from insurance until he tried physical therapy. It blew his shoulder out, so they gave him the surgery but it was too late and his shoulder could only be repaired to 30/40 percent mobility and will steadily decline.
I had a similiar experience with my shoulder. The therapist put me on an arm bike and shredded my biceps tendon on the impingement. Did the exact thing I wasn’t supposed to be doing. I even told them it wasn’t a good idea and she said that I would have to be reported as non compliant to work comp if I didn’t do the work she wanted. They ended up paying for the arthroscopic surgery to repair it. Work comp companies have nasty lawyers.
Thanks y’all. @Cannacryptic, I’ll give you a shout soon. I have a few questions. I was worried about some of what you’re saying. I wonder if I can just say I took the medicine and it didn’t sit well, just to get them to move to another one.
Don’t you have to have a prescription for the prednisone? I’d like to give that a try. The Alieve is already bothering my stomach a little.
