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Managing pain

Hi everyone, I am new here. I have been struggling with this disease for about 3 years. I went last year and seen a Rheumatologiest and she wanted to put me on Methotrexate (apparently it is a chemotherapy drug and I opted out. With all the side effects of the medications out there, I have opted out of prescription drugs and trying cannabis ointment. What I am starting to worry about is if I don't take a prescription medication, am I just making things worse and more progression of the disease? I am 53, what will I be like at 63?

  1. Hi @Diane1113, welcome to our community! We are so glad you are here. I can understand your concern about the medication and the side effects. Is the cannabis ointment helping you? There are many different ways to treat PsA and you need to be comfortable with your decision. I can appreciate your worries about the progression of your illness, and I would definitely encourage you to speak to your doctor about this. I am sending you over an article from one of our advocates who shares her experience with trying to find an effective treatment plan: I hope this is helpful. Jill, Team Member

    1. I am 53 and recently diagnosed and have accepted methotrexate and prednisone as was in so much pain. My understanding of the disease is the earlier you catch it the most likely you are of delaying any major problems. I wish I had the diagnosis 5 years ago as I was diagnosed with OA and my hips deteriorated badly and now also have two shoulders and knees that require replacement and a spine that’s damaged at every level and have been advised to avoid surgery by pain clinic as it will probably make it worse.

      It’s not nice, but I can’t let the disease keep attacking my joints.

      Good luck.

      1. I'm 52 and it has took me 10 years to get diagnosed, I started searching for answers when I "merely" had hand pain. It has progressed to axial/peripheral pain and issues - wrist and hand issues, foot issues, various tendon issues, SI joint pain, hips, neck, elbows, etc. and for me it's very symmetrical. Most of these symptoms are somewhat consistent these days but I can look back as far as my 20s to when they were intermittent.

        I wear wrist splints at night and to drive. I have rings to help keep my middle fingers from hyperextending (preventing Swan neck deformity). I have splints on my little fingers at night to keep them straight (preventing Boutonniere's Deformity). I wear shoes all the time. I eat healthy, stretch, and am as active as I can be and I rest.

        Methotrexate, plaquenil, sulfasalazine, Otezla, Humira and now Cosentyx have all been in my arsenal. I don't want to take any of them but, like with the diet and exercise, I'm fighting this stupid disease. Methotrexate pills gave me some digestive issues but the injections didn't. Sulfasalazine and Otezla did as well and I couldn't tolerate them. Humira stopped working. Everyone has different experiences. IMHO, this disease is worse for us than the medications. If you get side effects, you move on to the next one.

        Someone in one of the groups I'm in said they didn't want medication - well, I don't want this disease but here we are. Natural remedies, cannabis, pain meds, diet, etc. all can have a roll in helping but aren't much in terms of slowing progression. I already see this progression in my hand and one ankle - I'm sure I can't see all of it. Medication is another tool and every med has side effects, most of which you will never experience. Even Tylenol has a big list of side effects.

        I work very part time these days but I work to get seniors active, many in their 80s, many with a lot of health issues. My question would be - what kind of 80 year old do you want to be ? I wan to be able to keep mobile, so I take the meds. It's a very personal choice. Best of luck.

        1. I am going to come out rather strongly here, and say that your decision to forego traditional treatment in favor of something with no medicinal value whatsoever will have long term catastrophic consequences for your health. Your rheumatologist is a trained, educated, certified specialist, and will only want to do what is best for you. Getting on DMARDs as soon as you are diagnosed is the key to getting a somewhat manageable grip on this disease, and putting off this medications will no only prolong your pain, but lead to greater joint destruction, and make it harder to get under control in the future. So, yes, by not taking the medication, you will make things worse, and the disease will progress rapidly. Generally, most people who get on DMARDs early in this disease will fare pretty well for several years before needing more expensive biologic treatments.

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