Does everyone get swelling with pSa? I never get noticeable swelling like the sausage fingers/toes. I really feel like I have pain not only in joints but also tendons, ligaments. I’m on Enbrel now (5th shot tomorrow)…how do you know if it’s working? Does pain ever go away? Or does pain just get manageable to live but not be active like im used to with biking, kayaking, Yardwork, etc?
Sorry that was so random
Swelling is not a big deal. What you should be worried about is no swelling and lots of pain. At least with swelling it obvious something is wrong. Besides my SI area on back, I don’t get much swelling. I good rheumatologist can pick up on areas of inflammation. Tracking bloodwork and imaging is also used.
I get more swelling now than when this started.
Oh, so you have been diagnosed with PsA – your profile says you are still “inflammatory arthritis”. I was a bit confused about that on a previous post. Five weeks is not very long to have been on Enbrel. Some people start noticing glimmers of improvement after a few weeks, but really it takes about three months before you will be able to know what it’s going to do. The occasional lucky person knows within a few shots.
How much of your pain goes away depends. Some people find theirs disappears, others just notice an improvement. I still get a bit stiff and achy sometimes, but the only place I really have pain is my feet, and that pain is from damage. Enbrel does a pretty good job for me. The biggest improvement for me is in my fatigue levels and my mood. That counts for a lot: if you have energy and you’re not depressed, having some pain is more tolerable.
As for how much benefit you are going to get from Enbrel, you will just have to wait and see.
I have not had the “traditional” swelling that goes with sausage fingers and red hot joints. I don’t have elevated SED rate either. My right hand and most fingers are definitely swollen tho. And have been for a long time now. Doc recommended Stelara and is concerned about Mutilans. Yuck! From what I have read, there is lots of hope for change with the medications!
Guido- I've only had the sausage digits on random occasions. That said, I've had one finger that's been mildly swollen for months and months now. Not quite sausage, but definitely swollen. Yes, having soft tissue inflammation is part of the disease as well, and part of the source of pain.
How do you know if your biologic is working? It may be one of those things that you'll notice over the next month or so. Maybe that you realize that some things are no longer hurting. For example, it took me a few weeks to realize that my shoulders no longer hurt, and that my wrists had stopped hurting as well.
The funny thing is, the biggest difference that is smack me in the face obvious is that I did NOT have a flare this spring. I know, harder to take note of.
Does the pain go away? Maybe, maybe not. If there's damage, it might take longer to go away, and some of it may just become background noise. When that happens, you may be more willing to do the activities that you miss.
I was originally diagnosed with pSa by original rheumatologist but current doctor wasn’t so sure yet. Based on bone scan results - she says I just have a little inflammatory arthritis in hands/feet. I struggle with the things I used to love to do because of pain, stiffness, lack of mobility, get tired easily. I still do my Yardwork but break it up into a few days. Go for short walks (mile or so), biked 8 miles today & did pretty good. I can’t pull my son anymore - just too hard on me. May try again. I haven’t kayaked in a long time - miss it! Too hard to put on car so I may take my dads out of his dock soon (he lives on lake). I feel like I get tired easily. And there is that fine line of activity threshold that if I pass - my entire body will be screaming in pain and I’ll be up all night.
My swelling is a lot of tendonitis. The bursitis and tendonitis can be very painful but sometimes I am surprised to see something really swollen and it didn't bother me at all. My joint swelling is a bit odd. My joints swell above the joint that is involved. For some reason I thought gravity kicked in and kept checking from the joint down. I had one elbow that started hurting and I though it was fat above the joint and I thought "Aha I am out of shape that is why it hurts" so I started exercising it like crazy in the pool. It started hurting more and clicking and then started locking. I thought that is weird so I looked in the mirror to check out my "flab". It was swelling! I realized it when I caught sight of the other elbow. Geesh!
My swelling started in childhood. By the time I was diagnosed in my 50s I had had occasional sausage digits my nails were fully involved and my hands were swollen all over. Recently my feet are swollen in the same way. Like I am wearing gloves and socks but it never goes away now. When I had a sausage toe I thought I had clipped the nail too close. The nail appeared to be falling off so I duct taped it when I went skiing so I wouldn't loose it on the mountain! I was about 40 when that happened. I should have guessed it then but my symptoms would flare and then go away again so I put it out of my mind.
Guido has your current Rheumy checked you for CFS or FM? Your symptoms sound familiar to me but I can't place it.
My original rheumatologist ordered Bloodwork to check for RA but it was normal. Took pelvic exam too…normal. My current rheumatologist has not ordered any bloodwork - just the bone scan. I’m not sure what CFS or FM is but I’ll check into it. Just took my 5th Enbrel shot…hope this is the week! Sunday night is always the worst - my wife says I do too much!
CFS is Chronic Fatigue Syndrome and FM is Fibromyalgia. I hope the Enbrel helps. Don't forget to pace yourself!
Ugh, I can so relate to everything that you just wrote! When my new Rhuemy lists the symptoms that makes her think I have PsA ,and that it should be treated, she mentions the fatigue. This kind of fatigue is not experienced with osteoarthritis. It’s part of the inflammatory arthritis.
guidob2222 said:
I was originally diagnosed with pSa by original rheumatologist but current doctor wasn’t so sure yet. Based on bone scan results - she says I just have a little inflammatory arthritis in hands/feet. I struggle with the things I used to love to do because of pain, stiffness, lack of mobility, get tired easily. I still do my Yardwork but break it up into a few days. Go for short walks (mile or so), biked 8 miles today & did pretty good. I can’t pull my son anymore - just too hard on me. May try again. I haven’t kayaked in a long time - miss it! Too hard to put on car so I may take my dads out of his dock soon (he lives on lake). I feel like I get tired easily. And there is that fine line of activity threshold that if I pass - my entire body will be screaming in pain and I’ll be up all night.
Whoops…
There was a study awhile ago that stated TNFAi maybe helpful for CFS. Not sure on the results. There are various diseases that cause joint damage, some are easily tested for. If not convinced, ask your doctor see what has been tested. Eliminate what it can’t be and in the end your list might be smaller. Oh btw, what was the first joint to start hurting?
My Achilles’ tendons were the first things to make me realize something was really wrong. My knees hurt to bend but I just attributed that to being active and sports when younger. When I kayaked my elbows hurt bad. Biking hurt wrists. My hands and wrists starting hurting bad the beginning of the year. Now my feet hurt but I have flat feet so they’ve always hurt. My wrists seem really weak too
Any back involvement? There are several types of PsA - some are slower to progress. Otherwise, there are other conditions that can mainly ruled out by simple test.
Yes, I have a weird spot on spine/middle back that is almost always tender and hurts on active days.
Does your rheumatologist know that your first symptoms were in the Achilles’ tendon?
guidob2222 said:
My Achilles’ tendons were the first things to make me realize something was really wrong.
I can’t remember if I’ve mentioned that or not - I guess I just assumed it would be in my medical records from original rheumatologist diagnosis but maybe not. Isn’t that the classic symptom of pSa?
I very rarely get swellings except those over boney areas that have hurt for years and they are hard and permanent. I have many tender points that hurt like blazes but although occasionally slightly puffy, never could be described as swollen.
I have FM and my daughter has CFS. That doesn't usually involve visible swelling
michael in vermont said:
CFS is Chronic Fatigue Syndrome
and FM is Fibromyalgia. I hope the Enbrel helps. Don't forget to pace yourself!