That is exactly right.
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Oh yes. I know exactly what they are thinking. And some days it’s visible and other days it isn’t. It’s a crazy disease. Interesting that you mention shin pain: I had that too, in my early days and couldn’t figure out what it was all about. Neither could the doc. And then it was elbows, and backs of legs and aching from the waist down and sore upper arms. But complain about it? Are you joking? Sounds completely nutty.
But we get it here, Amos! We get it here.
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I was on Remicade and doing very well. Of course, that was when my insurance at the time decided that they were limiting the dosing and schedule for Remicade pts. After 3 years of trying different bios and having to go on disability due to my deteriorating condition, I was Rx’d Cosentyx. Granted, nothing has worked as well as the Remicade infusions, but I’m beginning to get my life back on Cosentyx. Its been a slow process, but I’m hopeful that I can continue moving forward. I hope the same for you. Your experience does make me a little suspicious of the biosimilars tho.
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In eight years I have failed 4 biological plus 3 others that were supposed to help these work better. My primary dr. Insisted I switch to the University Rheumatologist clinic about 90 miles away. Starting Cosentex. This dr. Believes I have several forms of psa and wants to go after a different protein. I wish us both luck in our continued journeys. Positive energy on its way.
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I have been through more than 10 including basic DMARDs such as a Methotrexate and Arava. Thankfully, new drugs are being developed for people like us.
I know that it’s difficult getting your hopes up, when you try something new and then it doesn’t work. I can’t use Cosentyx because of potential intestinal impacts but there are several similar drugs that I cannot wait to talk to my Rheumy about at my next visit.
My Prayers go out to you!
Never give up!
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Hi Poo, it sounds extremely tough to keep walking into these dead ends trying to find which medication is going to work in the long term and be nice to your body, especially as PsA continues to keep you from doing what you love, but it’s great that you’re able to find some ways to decompress and look on the bright side. The inflammatory pathway has all sorts of branches and triggers that makes it hard to pinpoint exactly what is going haywire, so the longer you hang in there the more medications that won’t work will be ruled out. Not to say that it is an easy task, but we’ll all be here for you nonetheless. It’s okay to take days for self-care and to let everything out as long as you don’t give up! We’re all rooting for you!! 
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Hey @Lyndsey! Great to see you back. How are you doing, anyway? Things here are really moving along, as you can see.
Why not start your own thread by clicking on the banner above, and going to the home page. .Then click on +NewTopic and away you go! Your profile no longer has any info about you, so introduce yourself to refresh our memories!
Glad you’re back.
Seenie
Thank you!
I tried Cosentyx as my first biologic and after the month of loading I was in worse pain than when I started. I didn’t want to do the first monthly maintenance shot but my rheumy practically begged me to use it…it was SO expensive…so I did.
I immediately started spewing from both ends. I had two weeks of low grade fevers and bloody diarrhea and seriously thought it had given me ulcerative colitis or Crohn’s disease! My guts weren’t okay for weeks. I also got blepharitis–psoriasis-like eyelid inflammation that is a recognized effect. I’ve been off Cosentyx for 4 months now and had 3 episodes of the blepharitis.
At that point I said, no more biologicals for me! I’m a medical copy editor so I can read the research. Deep diving into the research studies on the drugs for PsA, a good outcome is for the drug to make the symptoms 20-30% better overall. No drug has been shown to prevent long-term joint damage in PsA, and several studies have shown that NSAIDs and DMARDs DON’T prevent joint damage.
I’ve decided to quit beating up my body with different drugs that keep giving me new illnesses as a side effect and instead keep up with my nutrition and a modified yoga and weight training routine, which helps me more than anything else.
That’s my choice. I wouldn’t push it on anyone else, but I just can’t force myself to keep on swallowing and injecting poisons. I feel like I’ve been gaslit and scammed into acting against my own best interests.
What kind of nutrition are you having and what effects has it had on your symptoms?
Letizia, let me say first that this is ALL ME. I firmly believe that nutritional recommendations are very individual because people are biochemically unique as their fingerprints.
I find that eating or drinking any type of sugary sweet food or beverage tends to give me a spike in tendon and joint pain starting about 12 hours later and lasting a day or two. I can “get away” with an occasional sweet dessert if I eat it right after a meal with protein and plenty of fiber. I don’t do well on very low-carb (i.e., ketogenic) diets, but limiting carbs to whole grains and starchy vegetables seems to help over weeks to months. I also practice intermittent fasting, with an 8-hour eating window, mainly for slow and steady weight control (lost about 30 lbs. in 3 years, still have many more to go). Drinking too much alcohol (more than 2 drinks) will usually flare me up as well.
My theory is that it’s related to spikes in insulin levels. I’ve never tested as diabetic or pre-diabetic, but I was hypoglycemic during pregnancy. Psoriasis and PsA are both more likely in diabetics and obese people, and all are linked to metabolic syndrome, with increased risks of cardiovascular and cerebrovascular disease.
Supplements: I take glucosamine sulfate, 1500 mg. I take high-quality fish oil, equivalent to 2g of Omega-3 fatty acids, daily (most commercial fish oil supplements are worthless or even harmful). I take 2 g of powdered ginger. B-complex. Calcium-Magnesium (without Vitamin D because I’m white, live in the tropics, and get sun almost every day). I take Co-Q10/ubiquinone when I can get it (it’s hard to find where I live, so I stock up when I visit the USA).
I’ve tried a boatload of other herbs and supplements that work for many people but not for me. So, again, what works for me might not work for you.