Hi Everyone
Newbie here. I really need help from this community to know if I truly have PsA or some other strange disease. I will try my best to document it with pictures. I have been reading some articles about Covid toes or chilblain toes they look similar to mine.
About 4 months ago, I started to have some swelling, hot and some pain in a couple of toes in the right foot and they hurt really bad when I touch the red swelling area. The affected area keeps jumping to different toes.
Date: February of 2021: As you can see it only affected the right foot at that time and get worse in the evening. Swelling and redness only to right foot at that time (Asymmetric).
March 2021: Saw my primary doctor and we did COVID 19 Antibody test and it was negative. RA test came out negative also. He referred me to a rheumatologist and my Rheumatologist thinks that I have PsA and I was put on sulfasalazine. I already finished the entire bottle already. I don’t think it is getting better, but it’s not getting worse either. The swelling of toes jumps to different toes at that point. I also started to notice the little red dots after the swelling has gone away. Maybe small vain have pop out?
I started to see these red dots too and I do feel pain when I walk, but those things happen during inactivity or when I wake up in the morning. Maybe, I do have a blood flow issue?
March 18th 2021: The swelling and hotness jump to my left foot toes.
My hands are also turning red and vain were popping out with lots of pressure again in the evening time. I actually have to put my feet and hands above my heart to feel better.
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I don’t have stiffness or joint pain or at least I haven’t noticed much. Once in a while, I do have some pain in my pinky fingers.
The chances of Covid toe without any Covid antibodies seems to me to be unlikely.
Whilst no one here can diagnose you, the symptoms are certainly consistent with an inflammatory arthritis, including the sudden moving around of pain and / or swelling, particularly overnight.
I get little red dots on my feet too - they look exactly like yours. Mine sometimes get a bit tender and/or itchy, but often I don’t notice any symptoms. For years docs just thought they were a type of exema- I was recently at a dermatologist for another issue and he asked to see my feet - apparently mine are a rare type of pustular psoriasis (apologies forgotten the exact name).
It is not unusual to have no response to sulfasalazine in PsA, only a few people on this board seem to get good results from it (certainly did nothing for me), it sounds like it is time to go back to the Rheumatologist and ask about the next step.
Welcome to our community, @Dogecoin ! I know, EFS sounds real, doesn’t it, but no, that just seemed to appear on my screen in a silly moment.
But that’s exactly the way it felt: hot pressure inside the foot. Mine was in the mid-foot, and I can imagine having that same sensation in the toes would be really uncomfortable (especially when it comes to putting shoes on).
Your profile mentions sulfasalazine. How long have you been on that? Some people do get relief on it, but others don’t. If you’ve been on that med for a few months and you still have ETS (you know …) please tell your rheumatologist. It’s probably time to try something else.
One of the things we say around here is “Fear the PsA, not the drugs.” What you are up against is a disease that can be sneaky and insidious. The people who usually do best are the ones who get early and agressive treatment. You don’t want to be the person who thinks they have mild disease, who suddenly finds they need a joint replaced because the damage happened so fast.
We’re glad you found us, Dogecoin, and we hope you will be too.
Mine hotness are around toes and side area. I do use ice to cool it down. Sometimes, I feel like my hands and feet were about to explode. My question is why only in the evening time? I don’t even wear socks anymore, and I used to wear socks all the time. I hardly get any warmness in the day time, but get worse in the evening time.
Thank you. I am scared of drugs and I stopped taking Sulfasalazine after one whole bottle. I will definitely get second opinions from another doctor.
I don’t want to hijack the OP, but here is my own post with lots of pictures if you want to take a look at my issue.
Dogecoin, you didn’t hijack the other thread: I hijacked your post instead! I moved two of your foot-related posts to this thread that you started. Done! So we can carry on.
Not covid, not RA, not Gout. This one’s pretty easy. Look up “Dactylitis Psoriatic Arthritis”, and have a look at images while you are at it. I had dactylitis as one of my earliest symptoms of PsA, but I only realized what it was many years later when I was diagnosed with PsA.
I’m sorry if I missed something along the way: are you seeing a rheumatologist? Who prescribed the sulfasalazine? Next time (or “When…”) you see a rheumatologist, please show the pictures to her/him. They will be interested.
We totally get being afraid of drugs: many of us have been there. In fact, many of us resisted going the pharmaceutical route until it became clear that there was no alternative. Please realize that you may be up against a formidable adversary and don’t mess around. The only person who can assess the severity of what you have, and do a reasonable job of calculating the odds, is a rheumatologist.
So how does the rest of you feel? Until my knees gave out, I didn’t have much in the way of joint pain. My pain was mostly generalized body pain, which of course confuses docs. And like your toe issues, my body pain used to wander all over. Then it was my arm (“must have pulled something”) then it was my back (“probably slept in a strange position”) then it was my shin (“what’s that about”) for years and years. I was really really tired, but of course that can be attributed to all kinds of things too.
Let us know how you are getting on. I’m really glad you found us, and hope you stick around. Keep asking questions and reading: the more you know, the better off you’ll be.
Yes, I did see a rheumatologist and he is the one that prescribed sulfasalazine. I am asking for a second opinion and just to be sure. I have looked at the “sausage toes” AKA Dactylitis PsA" before.
I am watching my diets and trying to figure out what triggers the flare. I think milk products may be triggering those flares.
I found out a few years ago that I have anemia and I am pretty sure I have thalassemia trait or carrier. I do feel tired. Now that you mentioned, I had a frozen shoulder about 3 years ago. Is this related? Maybe…
I’m one of those for who sulfalasalzine worked brilliantly for a time. However it took over 6 months to get going (all of our meds are slow to do anything) and that was only on 6 tablets a day. So just one bottle wouldn’t make any difference to your symptoms sadly. Out of all the meds that can be offered to you starting off sulfasalazine is the most benign on the rest of your body (provided you tolerate sulpha which you obviously do) so I would go back to your rheumy and start again.
The swollen toes and it hopping around your toes is classic PsA in my view sadly. And it won’t get better even more sadly on its own.
I think you are going about this the correct way: get a second opinion, meet another rheumatologist. I was reluctant to get a second opinion in the beginning, and that set my progress back and delayed my getting effective treatment. It was the people here (you know who you are) who convinced me to get someone else to look at my case. That second opinion made all the difference: I realized that rheumatologist #1 just wasn’t taking enough factors into account, and as much as I liked her as a person, I needed more than she was giving me. I started aggressive treatment, improved greatly, got another rheumatologist and moved on.
Remember that a rheumatologist is a doctor with whom you will probably have a very long association. Pick one who listens to you, inspires confidence and with whom you are comfortable. Your health and your quality of life will be better for it.
It was generally assumed that the β- thalassemia heterozygotes do not bear significant medical risks except a mild microcytic anemia. I hesitate to point out that since 2012 the β- thalassemia trait has been directly associated with the autoimmune conditions, nephritis, diabetes, arthritis, fibromyalgia and asthma. and the blood counts a a part of every standard rheumatological work up. If you are afraid of the meds used to treat PsA, I don’t even want to mention what comes with out of control PsA…
Please keep in touch; we genuinely want to know how you are doing and what’s happening. (You’ve had a taste of our enthusiastic “hospitality”!)
Thank you for welcoming. I am glad that I found this community as well. I will keep you all posted.
I am seeing some trend with what I eat and the flare. I started to having some lactose intolerance a few years ago. I had yogurtand lots of cheese a couple of days ago and started to have some flare that night and the next day. Any of you had issues with milk products?
Thats a known one but I hate to say its just more evidence for you to get some AGGRESSIVE TREATMENT NOW! IBD (aggravated by lactose) is a known co-condition with PsA Its clear now, that the same problem genes can be responsible for psoriasis, Crohn’s, and UC. These conditions trigger inflammation in similar ways, too anywhere anytime. (30% of PsA patients and significantly higher in Women. That being said lactose intolerence is generally not the issue with cheese and Yogurt as the lactic acid is broken down in the production of these dairy products. Its more a case of the gut saying to harder to digest products “Not here, not today” Try goat cheese and see what happens… If its lactose intolerence, you generally won’t get a reaction. Some people get a digestive disorder first and psoriasis/PsA later.
