Feeling lost
Hi everyone. It has been quite a while since I have been on here. I was diagnosed with Psoriatic Arthritis over a year ago. It has been an uphill struggle that just seems to be getting worse.
I already have scoliosis, fibromyalgia, psoriasis, and now psoriatic arthritis. I struggle every day being in pain but still trying to do the things that I love to do like gardening and woodworking.
I was seeing a rheumatologist and he put me on leflunomide and it was a nightmare of screaming pain and incontinence. I tried talking to the doctor but he would not speak to me and his nurse who called me just wouldn't listen to me. I quit taking the medication and have been taking pain meds and an anti inflammatory.
I see a dermatologist for my psoriasis which is all over my arms and legs and he wants me to go on Skyrizi but I am not sure if I want to go down that path. There are so many side affects with these medications and I am not sure if going on biologics is just going to add to my problems.
I am 70 years old and trying so hard to keep being active but some days I am just so tired and depressed.
Hello
, I'm so glad that you've come back to update us, although I wish that you were able to share happier news. My heart goes out to your that things have seemed to be getting worse and it's feeling like an uphill struggle. You certainly are managing a lot! I'm sorry to hear that your doctor and the nurse have not listened to your concerns or been a source of information and support for you. I can understand any hesitation you have, but would it be possible to seek out a new doctor? You deserve to have the medical care from someone who will listen and support you.
As far as the Skyrizi goes, that really is a personal decision only you (with the help of your doctor) can make. Your worries about possible side effects are understandable, although I will tell you that many people are able to find relief on this type of medication, of course, that being said, it doesn't work for everyone and many other people find that it can take awhile to find a medication that works for them, with minimal side effects, so your hesitation is valid. Is your dermatologist willing to go through the medication side effects with you? Perhaps being able to have a conversation to voice your concerns would help you make a decision you're comfortable with.
Please know that whatever you decide, this community supports and is here for you. While we have some community members who choose to medicate their PsA with various types of treatments, we do have others who choose alternative therapies and complimentary medicines. You have to do what feels right for you. And, if that feeling every changes, you can, of course, change your mind a try something else. Sending you gentle hugs. -- Warmly, Christine (Team Member)Christine, Thank you for the beautiful message. We live in a relatively small city and finding good doctors and getting appointments in a timely manner are often difficult here. The doctor who treated me so poorly is no longer here.
Some days are better than others but dealing with Scoliosis, Fibromyalgia and Psoriatic Arthritis is a daily challenge. At 70 years old, I can deal with with Psoriasis patches on my arms and legs. They don't really hurt , they are mostly just unsightly.
I have always been the kind of person who likes to use natural remedies over pharmaceuticals. My dermatologist recommended a mixture of Clobetasol liquid and CeraVe cream and that seems to help and I also use coconut oil to help keep my skin moisturized.
I will definitely look through the support group to see what other people are using for alternative therapies.Hi
, I'm glad to hear that you're trying some recommendations that seem to be bringing you some relief. I wanted to also share this link to a collection of article on complementary therapies and natural remedies, https://psoriatic-arthritis.com/managing-symptoms-naturally. While it's true that natural remedies may not treat the underlying inflammation from PsA, many people find natural or complementary therapies helpful in managing their symptoms, you're not alone. Obviously how you decide to treat your PsA depends on what you and your doctor feel comfortable with and agree on so hopefully the two of you can come to an agreement on what you're comfortable with and what helps you get some relief. Sending you gentle hugs. -- Warmly, Christine (Team Member)
This is the kind of disease that does not respond well to natural remedies alone. If you want relief, you will really need proper medications. And Skyrizi, from my experience, is among the best. I was on it for about two years, until it stopped working for me. Minimal side effects for me. Try not to get too worried about possible side effects. The disease can be be much worse than possible side effects. Coronary artery disease and peripheral artery disease are among the many comorbidities of PsA. Alternative therapies simply are not a realistic option. Proper diet and exercise along with current medication regimens have proven effective though.
So far, I have found that water physical therapy has been working really well for me. I go twice a week and I have been feeling better. These days so many of these drugs are worse than the disease that they are trying to cure. At 70 years old I am still very active and just want to live the rest of my life as pain free as I can.
water therapy sounds like such a gentle way to get some exercise and movement! Good for you for getting there twice a week, and how wonderful that it's been helping you feel better. Wishing you continued movement and relief! -- Warmly, Christine (Team Member)
