My new Rheumy seems to be stuck on wanting to see “sausage fingers”. Has anyone had trouble with seeing all the swelling in their body but inflammation tests are negative? I’ve had so many doctors tell me this or that part is inflamed but lab tests are negative. I feel like a baloon that is being blown up so I’d like more information on this please.
My inflammation markers come back negative as well, and I most definitely have PsA / AS. I have had sausage digits, but never when I've been in my rheumy's presence.
I went a number of years before being dx'd with PsA. My blood work was inconsistent with the occasional increased sed rate and some false positives for other auto-immune diseases. You get to the point where you start thinking maybe this is all in my head but I knew it wasn't. I just kept being persistent with the docs...with a lot of encouragement from my wife because she's tired of me not feeling well.
Regarding your Rheumy wanting to see "sausage fingers", I'm very surprised considering not everyone with PsA gets them.
Same here. Rheumy needs to wake up with me in the morning time to see how bad it really is. Its awful when i first wake up. I get up 2 hours ahead just to get motivated and loosened up.
My SED rates always come back high. I have had a sausage finger in the past and the swelling is gone but I lost the ability to bend it down completely. I have had a sausage toe for 3 years and the swelling has never gone down and is painful. I do have permanent damage in hips and feet. The sausage digits didn't show for years so that is strange the doc is searching. Is he/she looking for pitted nails?
I had no idea what was wrong with me for over 10 years until I happened to go with my friend to her Rhumy for her lupus. Her Dr took one look at my hands and fingernails and told me I needed to make an appt to see her because I has PsA. So, after waiting a year to get in and see her, all my blood work came back normal. My hands stay huge, but they don’t really hurt. My neck is the worst part of my pain and my knees and hips hurt. It’s been my impression that everyone has different symptoms and the sort of float around the body. My toes are normal, but I have Reynard’s in my feet. This is a strange disease that is very hard to diagnose.
I have one “sausage finger” that got a little better once i started treatment but has never gone away completely. All my inflammation markers are always high though. however, there are times that my rheumy says certain other joints are inflammed when I cant tell they are. I guess its one of those things that only a trained person can notice or feel. Although rheums are people too and often make mistakes, sometimes it may be something we need to take their word for.
Many of the blood tests are for RA and are looking for a particular set of proteins (CRP being one of them)
The "shot gun test" is called SED Rate. here they assume that the proteins produced by inflamation will latch onto red bleed cells making them sink to the bottom of test tube fairly quickly.
Great theory but PsA doesn't cause some of the more specific Proteins tested for. The others that are more general and can be present with PsA even if they do latch on may not be found.... You see if you are taking blood thinners, the sed rate is effected. Now I don't know ANYONE with PsA taking NSAIDS which of course work by thinning the blood, but if they were the SED Rate would be a waste of time......
That's why sausage fingers are so helpful along with funny nails, range of motion etc etc. There are no blood tests listed in the Dx criteria for PsA.
The first rheumy I went to relied solely on my sed. rate number and did not care about the inflammation. The doc I see now told me on my first visit that he looks at the numbers but it is how I feel that is most important. I struggle with the inflammation seems right now daily, which I think is partly about summer temps more than anything. I have had "sausage toes and fingers" but not all the time. I believe any rheum. should know that inflammation does not always occur when we are in their office. In fact, I see my doc always in the morning when my inflammation is quite minimal. The afternoon is when it seems to get bad, not saying I don't sometimes wake up with it; just more common in the later hours of the day.
You can have negative readings and still be very inflammed. This happens to me regularly but again my doctor's focus is how I feel. Most important and that is why I love him. Ask your doctor if how you feel is important to them and what is the plan to get there. Sometimes we need to stop and let them know what it is we are in need of, not what they want to see.
Good Luck and I hope you get to feeling better soon!
AnneMarie
My first rheumy quickly diagnosed me w PsA bc of my pain and sed rates and labs, even without sausage fingers or psoriasis. Then I got a better rheumy. Not having sausage fingers was one of the clues that made her look beyond PsA. Saved my life! I had vasculitis, not PsA. Many autoimmune diseases give similar labs and pain, so I’m glad she persisted. (but she still treated me and my pain while figuring out the dx - many of the treatments are the same - no excuse to leave you suffering)
Ps - I lurk here even though my dx changed bc this is such a great group!
My Rheumy is being as pro-active as she can. My numbers were right for PsA but some other tests were not conclusive to the standard, however she has me on 15mg of Predisone, 3 METHX, 1 Naproxin and vicodine as needed. The pain is manageable until about 2 PM and then the pain level is not controlled. Since I work I only take half of Vicodine at 2 PM and 2 full at 8 PM. This of course is not ideal, but until my insurance will OK HUMERA this is the game we play. The METHX makes me so tired that I am ready for bed at 8PM but never make it to bed until 11 PM. I seem more sensitive to sunlight, is anyone else experiencing that? I am told I am more emotional, does anyone have that side effect also?
The first thing my Rheumy did was get a DNA testing. There is a marker there that let them know if it is PsA. As you check out the different types of PsA in the website address below, notice that of five types, only one include the "sausage toe/finger". Many docs have said that before they had all these blood tests, doctos relied only on sight to diagnose.
That's exactly right Gelita! My Rhuemy moved ahead even though I didn't have classic sausage fingers. I have all the other symptons. Sunlight a problem? Overly emotional anyone else?
Humira caused me to be "photo sensitive" as a side effect. It is called Lupus-Like Syndrome, which is a rare side effect. Sunlight and all lights affect my skin. The part of the skin exposed breaks out and my skin itches and stings. If you are experiencing these symptoms, go to a dermatologist to assist your Rheumy in determining this side effect. You will need to call the pharmaceutical company to report this, as the government keeps a tab on this side effect. Unfortunately, the Rheumy should discontinue the biological med that is causing it for 3 months to determine it is a side effect and not the illness. My doctor moved me back to Enbrel, that although it has the same LLS side effect, it seems to be milder than Humira.
Overly emotional? With all this happening into our lives, we HAVE to. My Rheum and Derm docs say we ALL need a Psych to deal with this disease. I got one and he was glad I found this site.
About half with PsA (or AS) don't have the marker More with the marker don't have anything than do.
Sadly the confusion in Dx comes less often from the Docs and more often jumping through the Insurance company/government hoops.
It always goes back to the mighty buck.
Oh my god, My rheumy is just basing it on sausage fingers too...I been very uncomfortable and in pain more days than others but everyday something for 5 yrs now. I get puffiness in my fingers with nail p and red finger tips, wrist and finger joint pain that moves around also. She is telling me it is fibromyalgia, which i had for 20 yrs. fibro pain does not compare to psa pain. I have been on mtx for p since April and it makes me sick, emotional and tired too. yesterday i thought i was going to pass out...felt clammy, hot, nauseous. Derm said to tell the rheumy my biggest problem is pain now that my p has cleared to almost 85%. And since the mtx is making me sick, derm said insurance might cover a biologic if the rheumy decides to diagnose me with psa. Derm is going to send correspondence to my rheumy and hopefully this might nudge her a little. I dont even have pain meds, naproxen and ibuprofen doesnt work. rheumy wont give me anything stronger. But Prednisone dosage rheumy trialed me on for 2wks did me wonders but made my skin p really bad. I actually felt normal for a few days on the prednisone.
I take tramadol and zipsor 4 times a day and am now pain free. If I forget to take it, I start hurting. The tramadol still enables me to work and function normally. It’s non-narcotic. Now that I am not in pain as much my psoriasis has gotten better as well. Maybe ask about those two medications.
What is Zipsor?
Yes that is how mine is. I have it in my spine and peripherals but I had the pain peripherally before the spine was inviolved. Not everyone gets the swelling in the fingers- especially if it is mostly spondilitis.