That Frustrating Slippery Slope

I have a lengthy history of scalp psoriasis (46 years - since age 8) and a family history of psoriasis (mother, sister, daughter) plus my mother had severe psoriatic arthritis - nearly every joint was fused and she was completely bed bound when she died at age 82 last year. I was diagnosed with PsA in May of this year after presenting with distal joint pain and inflammation in both hands, but predominantly the right hand.

Yesterday, I had my one month follow up appointment since starting MTX (7.5 mg/wk + 1 mg folic acid/day). The nurse asked about specific side effects: fatigue? I said a little for the two days following MTX; hair loss? I said there is a little more hair in my hairbrush; scalp psoriasis - better/worse? A little worse; joint pain? A little worse; anything else? Yes, I have to get up about six times a night to use the bathroom. She commented that my eyes were red and asked if that was something new. I told her that I had a bout with uveitis in the left eye about six weeks ago but the redness in the right eye is new, and my eyes, skin and mouth have been really dry. Then the doctor came in and said, "I hear you are not tolerating the MTX well." I said, "what led to that conclusion?" She said hair loss and fatigue. I told her that it wasn't anything major, just a little annoying. She asked how much water I have been drinking - my answer: about a gallon a day (probably why I have to get up all night, but I've been really thirsty!) She looked at my hands and commented that the swelling is not really noticeable (I don't know why I can see it and she can't), and she is beginning to wonder if it is PsA after all. Then, almost as if she was thinking out loud she said that she doesn't really know, that it isn't a typical presentation for PsA (not enough swelling and no redness) and it could be very early PsA or early onset osteoarthritis.

She wants me to see my ophthalmologist right away (I have an appt tomorrow) and get his opinion on the red eyes (specifically she wants to know if it might be related to the MTX). In the meantime, she doubled the MTX to 15 mg/wk starting Friday. She also wants to get X-rays of my hands and test for Sjogren's Syndrome to see if that is causing the issues with dryness (and from what I read it can have an autoimmune arthritis associated with it).

Unfortunately for me, the way my hands look and the way my hands feel do not jive. There is a constant, dull, throbbing pain that gnaws at me all the time, and a sharper pain that emerges and interferes with normal everyday tasks like clenching a gas pump, lifting a full pitcher, or chopping firm vegetables. I type all day long and by the end of most days, I am achy, tired and grouchy. My hubby has made lots of comments over the past couple of months about how irritable I am. It is not typical for me to be irritable and it is not typical for him to complain.

So my plan at this point is to move forward with the 15 mg MTX and see if there is any improvement in the pain (or the psoriasis) and then wait and see what the xrays and lab tests show. My next follow up appointment is in 4 weeks. I hope this doesn't lead to that slippery slope of test after inconclusive test that leaves you questioning your sanity and your doctor questioning your symptoms.

I wish you luck. I have PsA and osteoarthritis in my hands. Most of the damage seems to be OA at this point, as my PsA has been fairly well controlled. There are certainly things you can add, such as compression gloves or similar, using ice, etc. to help with some of this. BTW, some of the irritability can be related to the MTX.

I know what you're saying about the slippery slope. I've definitely been there, and now am slower to go to the doctor for anything that isn't more obvious.

Thank you for sharing. I'm new to this site and this condition and I'm finding alot to relate to. I too have chronic pain and aching in my hands and fingers. I have been using Dragon Dictate software to give my hands a break. I highly recommend it.… Good luck.

I have definitely considered dragon software, but the reviews on it seem a bit mixed. There is definitely a learning curve on it. I use some splints, braces etc, and gloves when it’s the totally tired feeling. I also wear wrist/handwarmers during cool weather. Leaves my fingers free, but also keeps them warm.


So sorry about the loss of your mom -- it sounds like she had a long struggle. I hope you and your family are comforted knowing she is free from pain.

You seem to have a good grasp on the evolution and progression of your symptoms. These auto-immune diseases are so tricky and often the symptoms don't seem to follow a pattern at all. I know I feel crazy at times when the symptoms are so intense one day and then, the next either almost gone or morphed into a whole new set of 'em.

What works best for me in re: to dealing w/MDs is to ask any questions I need to to be sure we (MD, nurse, me, etc.) are all on the same track w/my treatments.

Wishing you tons of good luck.

Thanks for sharing! I have also started having an increase in hand pain. A sensation I haven’t had in the past. When working, gardening, lifting weights or using my hands to do any prolonged daily activity I started getting a burning sensation,aching that was so painful :frowning: no swelling and a few joints that constantly hurt and are showing changes. Left baby finer and my right pointer finger along with wrists are all showing lumps(changes) I’ve also had the same burning sensation in both knees and hips after walking any distance, climbing stairs. The past few days have been a lot better, maybe the MTX is working? I have also had watery eyes and more red then usual but no far my Monthly tests have shown everything is fine. I’m often wondering if my diagnosis is right however after years of tests, recent break outs on my hands and feet (now cleared with the MTX) and knowing my Rheumy is also a researcher I believe they know what’s going on… I wish you the best and hope that the MTX helps :-).

I look like count dracula sometimes. My mouth so dry I literally choke on my Sylvia. My ANA test was normal - doctor ruled out Sjogren’s for me. However inflammatory arthritis is often associated with Secondary Sjogren’s.

I don’t get much swelling to be honest. When I do, it doesn’t hurt that much. My hands typically get hot when I get the pain.

MTX is toxic to liver. I’d monitor any changes to the eyes, specifically the color around the eyes. The color change could possibly suggest issues with the liver.

Also note that you can have Psoriasis in your mouth - typically It’s associated with postulates, but it can happen without.

That's a lot for you to take in, isn't it. As if dealing with everything isn't enough. I'm sorry to hear about your mom.

PsA is weird in that the docs do not have a conclusive test for it, at least last I heard. In a sense it's good your doc is questioning the symptoms you have and wants to be sure. I think in the beginning we all feel like we're going a little crazy with the meds and then the pain and worry for the future.

My hands have been a big problem lately also. Typing is still easier than trying to hold and write with a pen.

I hope it all turns out well.