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  • Hi everyone, I have just been diagnosed with PsA. The fatigue has been a debilitating factor for me. It has impacted on my ability to focus at work, as well as socially being able to make plans without risking cancellation at the last minute. I'm hopeful that now I know the cause of the fatigue, I'll be able to work on improving my energy levels, but I'm also uncertain what to expect. I'm curious to hear if others have experienced severe fatigue, whether this has improved with treatment (and what treatment), and what sort of lifestyle changes have helped you in keeping energy levels up to maintain your regular activities? Thanks in advance for sharing, Francesca

    How long did it take to get your diagnosis?

    Hi all. After years of chronic pain and fatigue, and about a year of testing and confusion, I was finally diagnosed as having PsA three days ago. A little history: Years ago when I started experiencing lower back pain, I had an MRI that led to a diagnosis of Degenerative Disk Disease. My primary doctor referred me to a neurologist/spinal surgeon to see what could be done. Since the degeneration hadn’t progressed further than my lumbar spine, the surgeon said that surgery wasn’t a good option and that I should try massage (ok), PT (expensive), exercise (yeah right OUCH), Rx pain meds (opioids no thanks), or cortisone injections (big nope). Needless to say, I lived with the pain as best as I could. Then last year things started to get worse. Not only was my back pain more pronounced and radiating further up my spine, but I also started having weird symptoms popping up—my fingertips were completely numb, my shoulders started hurting to the point I lost range of motion, my legs would feel like I had ice water droplets on them, and I started feeling full body aches like I had the flu. Since I’m also Type 2, my primary was first concerned with neuropathy in my extremities. I had a nerve conduction study done on my hands which concluded that I had carpal tunnel in one hand but otherwise no other nerve damage. At the time my A1c was high but not too high, so my primary ordered a series of tests to check for rheumatoid factor, C-reactive protein, Lyme disease, and a few other things. All of these came back negative. He eventually referred me to a rheumatologist. The rheum did the usual—asked me about my symptoms, checked pressure points, etc. He had me do the steroid test (I felt GREAT for five days), and ran bloodwork to check for inflammatory markers and the HLA B27 gene. The inflammatory markers came back negative, but the genetic test was POSITIVE! When I went in this past week, I wasn’t expecting a diagnosis but I was floored when he said he was confident that I had PsA. So now I’m on Sulfasalazine and Celebrex. I know it will take some time for the Sulfasalazine to kick in, but I was wondering if anyone could share their experience with this medication. So far my body seems to be tolerating it (aside from my immune system which is hell bent on fighting back if my sudden flare up today is any indication). Has anyone had that happen when starting this med? How long did it take for it to start working? Are there any strange side effects I should know about? Has anyone had any issues taking it with Type 2? I know I have a lot of questions, but since I’m on a cocktail of other meds for diabetes, anxiety, and high BP I’m a little nervous adding two more to the mix. K

    Hello. I’m really excited I found this site and these forums. I’ve read some great articles on the site. I live alone and just moved across Texas for a new job, so all of my support system and family are a several hours away. I got diagnosed a couple of months after the move and it’s been a rough five months. No one quite understands what I’m dealing with and my family and friends aren’t around to see it, and it’s not an easy task to explain all of the minutia of PsA. So I’m glad to have this group!

    I've recently been diagnosed with PSA and had the swelling sausage digit finger and ankle is very swollen and painful. I just started Methotrexate and haven't seen a difference yet but only on week 3. Wondering if with PSA you have other just a general pain in shoulders, hips, and knees without the being swollen up. This comes and goes some days better than others. Just wondering if this is normal to have other general soreness and pain. Thanks.

    Has anyone using Cosentyx now or in the past experienced extreme fafatigue? I have completed my 5 week dosing load and am close to taking my next dose. I have experienced fatigue from the start. I'm talking about the kind of fatigue that is so bad I can't even wake up enough to get a drink of water from my bedside table when I know I am feeling really thirsty. I can't get anything accomplished. I'm feeling frustrated because this is my 4th biologic. I can't afford to be this tired every single day. This is not a side effect listed so I just wanted to know how many other people if any have experienced this with cosentyx?

    So here's something I've been pondering that I don't have the scientific or medical background to answer. All of us with PsA know that it can be debilitating at worst and a huge life hassle at best. But are there ANY benefits to it? Does having an overactive immune system help you to fight off infections or even things like cancer? I ask this because I was talking to my rheumatologist a couple of months ago and noted on my blood work that I still had mono antibodies in my system. I had mono when I was 19 and I'm 51 now. She said that was a sign that I had a really strong immune system. Too strong ... which is the problem we all have. But I didn't know if there was any evidence at all of people who have PsA having fewer instances of other diseases or conditions due to having such a ramped up immune system. Just something I was curious about. I guess I'm always on the lookout for silver linings.

    Which shoes do you recommend to help ease foot pain?

    When my rheumatologist put me on Humira in December it was initially for a three-month trial, which has worked spectacularly well. I feel like I'm one of the lucky ones. She'd mentioned the possibility of taking me off it after a year to see how I do. My understanding is that, if you do go off a biologic. there's a chance your body can create antibodies to it so that if you have to start taking it again it may not work as well. So while that's a concern I also very much like the idea of maybe not having to be on this drug for the rest of my life. My mother, who has RA, took Remicade for three years but then went off of it and had a good six years before her symptoms returned. I was wondering if anyone here has ever gone off their biologic? Did your symptoms return? Did it not work as well once you resumed taking it? Just curious.

    I honestly don't even know what's going on anymore, but psoriatic arthritis checks all the boxes. I have had joint pain for a long time. It showed up first in my wrists probably 5 years ago or so. I didn't think much of it at first. Arthritis runs in my family and I pretty much just chalked it up to bad genes. I used braces and ibuprofen when I was tired of it or the pain made it difficult to do things. I had lots of other symptoms too, some of which I went to the doctor for (like unrelenting nausea which yielded gastritis and villus atrophy, but no real answers - and dizziness which was just recently diagnosed as POTS). In 2017 I gave birth to a beautiful 9lbs baby boy and things just seemed to break down one by one... and this started the insanity that is my life. A lot of things I experienced in his first year I chalked up to being postpartum, to sleep deprivation or my body adjusting to the changes to my life. The first thing that popped up was a rash, swiftly followed by joint pain (my hips at first and then my hands). I wrote off the rash (doesn't everyone get dry skin postpartum???), but the joint pain built up so quickly that I nearly lost my mind. Having taken medical classes in college I knew this was a pretty typical way for Autoimmune to pop up. The hips I never even considered till recently... My son was quite large and the docs had to get him out via C-section so I figured my hips were just upset from all the changes in pregnancy and carrying a big baby. The wrists at first was just "oh, that pain came back", but when it surpassed the pain I had experienced previously to pregnancy I started to worry. Since I had already seen a neurologist about the pain a year prior (with no answers), I asked my PCP to refer me to a rheumatologist who swiftly diagnosed me with seronegative RA (I've had a positive CRP and some osteopenia around my joints on x-rays, but RF, anti-ccp, and ANA were all strongly negative along with ESR (CRP is the only test I've had more than once out of these and it took a really nasty flare to bring it up out of the normal range (it was 15!)). The doc prescribed me Plaquenil, which did nothing but make me nauseous, and then sulfasalazine... Which helped (I now have a week or so between flares and the pain is reduced - no more hot by the bus feeling but I still feel crummy some days and run mild fever whenever I flare). Around the time I started the sulfa the rash stared to come back. It came with an awful flare and all the weird symptoms that seem to come and go in my life (nausea, GI troubles, dizziness, red hot painful swollen hands). I sent my rheumatologist a message (he's probably sick of me by now I'm sure)... and he essentially sent me back a message saying this is probably why my antibiodies were negative because it's probably psoriatic arthritis rather than RA. I looked into it... and it fits perfectly. It blew my mind because the rash isn't like clinical pictures (there's a spot on my ankle that's pretty close actually). You'd think I'd know by now that early in the disease process things don't always look like clinical pictures. Looking into the joint distribution and other symptoms and co-occurances a lightbulb went off in my head. I had never considered PsA because of my family history... but I've had "eczema" for years that comes and goes and this dry skin that just won't go away since my son was born (that on a flare goes completely erythemic (red, hot, burning) around flares of my joint symptoms... And some screwed up toenails (they're all flaking now but one is very thick, separated from the nail bed and bleeds like crazy whenever I clip it). So, once more down the rabbit hole I go. I feel completely caught off guard with all of this... But at least something's helping.

    I'm new here to the forum. I was just started on Otezla for my psoriatic arthritis and the nausea is brutal! Has anyone had good success with this med?

    Anyone else been taking it, any rough ideas on how long it took to 'kick in'? I really want to wean myself off the 8-12 Advil per day. Really.

    I'm curious if anyone has experienced coming down with a virus while taking a biologic? I'm on Humira and it works exceptionally well in me. To be honest I've sometimes wondered if it works TOO well. I know that sounds like an odd thing to say but I experienced relief from my symptoms the very next day after my first injection. Within two weeks they were gone completely. For a lot of people that sounds like a dream. But I've wondered if the Humira works SO well in me that I could be sick and not realize what it was because of the extreme suppression of the inflammation in my body? I have read cases online of people saying that when they get sick while taking Humira, they don't get a fever. And I wonder if that happened to me recently. I recently flew out to Colorado and when I got back i felt ... off. Then it went from off to not being able to eat without feeling nauseous. My gastroenterologist was so concerned about my symptoms that he got me in for an upper endoscopy within a few days. Everything came back negative. I'm getting my appetite back. Slowly. I can eat now without feeling completely nauseous but there's still a pang in my stomach, especially after lunch. I'm also not dizzy like I was two weeks ago when I felt constantly car sick. That's the best way I can think of to describe it. And my head isn't pounding like it was. I just wonder if maybe I got a virus on the plane but couldn't tell what it was because the Humira works so well in me that it was suppressing some of the symptoms you'd typically get with a virus like fever and chills. And that, also because of the Humira, it's been taking my body a long time to get rid of it. Just curious if my experience matches anyone else's? I still don't definitively know what the issue is ... or was. I'm just trying to figure it out.

    I had my six monthly rheumatology appointment today and was speaking to my doctor about the 5:2 diet. I've been following it for just over a month and have lost 11 lbs and have noticed some reduction in general inflammation too. I asked whether she put any stock in the claims that fasting and following a largely Mediterranean diet can aid in reducing autoimmune induced inflammation. She said there was a lot of interesting research recently and coming out looking at the role of the gut and fasting for improving autoimmune conditions. Any weight loss will also improve symptoms especially on weight baring joints. The thing that really struck me was that she told me she was on a plane home a few weeks ago and the lady next to her didn't know she was a rheumatologist. During the flight the lady was explaining how since she had gone vegan she had slowly experienced less and less symptoms of her arthritis and was now med free after being on methotrexate long term. Now, I don't personally think I could go full time vegan ever (chocolate, cornish ice cream & pasties, chicken curry need I go on?) but maybe 2 fasting vegan and alcohol-free days a week might be enough to reset the immune system? I'm going to give that a try, based on my encouraging results so far. I'm going to be trialling mixing it into my existing 5:2, cutting out most if not all red meat, increasing grain and veg alterative protein sources and generally following a Mediterranean style diet whilst making allowances for the odd bit of chocolate and wine on 'normal' 5 days. If you're stuck with me this far I'd love to know your thoughts or experience on how diet has affected your condition??

    Went to the pharmacy for the training. The injection stung a bit, but was totally manageable. Feeling super hopeful that it will help with the enthesitis and fatigue. Wish me luck!!

    Hi all. Wondering if anybody has gotten vertigo before. Had a terrible bout of it yesterday (first time!) along with pulsatile tinnitus (can hear my blood rushing in my ear). Then I read online that PsA can erode your inner ear and cause some of these symptoms (along with hearing loss...). Does anyone here get that?

    I recently upped my dose of Cosentyx. I didn’t have this issue at the regular dose, but now I’m having debilitating nausea + diarrhea. Loperamide doesn’t seem to help. I am taking probiotics + citrucel. GI issues are listed as a complication for people with IBS, which is among my diagnoses. In fact, IBS is listed as a possible contraindication. I’d like to stay on Cosentyx as it’s been the most effective at managing inflammation and pain - has anyone else dealt with GI issues on this drug?

    I just started having problems with chest feels like my chest has gotten crushed by something... Best way to explain it. Its not a sharp pain it's a heaviness .. As if like I said I have been crushed by something. I read that people with psoriatic arthritis might get inflamed tendons and one area would be the chest. Has anyone else experienced these symptoms? I'm only 34 so it's not heart related and it is not the same symptoms. Thanks in advance !!! Kinda frustrating. Very sore in the morning...

    Anyone heard of an intestinal migraine!?!

    I’ve been on methotrexate for probably 8 years. I was having a severe psoriasis problem with scales, looked like lizard skin on my legs. Methotrexate alone didn’t resolve the scales so my dermatologist got me on a study for Embrel. Within 8 weeks I was clear of the scales and 90% clear of psoriasis. Never had any of the side effects listed in these posts, but I always take my pills with food during breakfast or dinner and blood is tested every 6-12 months. Then the psoriatic arthritis started up and is bad now. It’s in my fingers (can’t even bend several), hips, lower back and now my feet and toes. I’ve been getting infusions of Simponi. I was on Embrel until I got on medicare last year and it won’t pay for Embrel or Humara. Now the arthritis is making it hard to walk and the doctor wants to put me on one of the new drugs but not sure medicare will approve it. Anyone know of any of the new drugs that medicare will approve??
Viewing 20 topics - 1 through 20 (of 166 total)