What is wrong with me

General
1

Good morning. I’m not sure why I am writing this. I was diagnosed as having PsA in Jan '17 after having a few tendons flare up that just won’t seem to get better. Since then, a lot of new, different pains have come along, but very little in the way of answers or relief.

I am 48, and generally have been in great health, except that for the last 20 years(?) I have had IBS. 2 years ago, I was running 5 miles a day, and playing soccer twice a week. I started a new exercise regiment for strengthening my ankles, which seemed overly prone to rolling. About a month into it, I developed insertional tendinitis in my Achilles from over use. I started on PT for that when, about 6 months later, after a weekend of LOTS of yard work, I awoke to tennis elbow. Started PT for that too. A few months later, I awoke to an oddly swollen knuckle (pointer finger at base of palm… not “in the digit”). It didn’t feel like tendinitis, but more like how gout is described. Sharp, needly pains from inside. This one didn’t have a triggering event, it just came on.

For my heel, I did have an MRI done and it did not show any damage. It was done by a sports med doc and not an RA doc but I would assume if there was bone degradation he’d have seen it. Neither my heel nor my elbow has visible swelling. The finger was clearly swollen and stayed so for months. Now, about a year later, it doesn’t’ look much different than the other hand, but it does still hurt when I move it.

So far as skin issues, I had what in retrospect might have been a touch of psoriasis on my cheeks twice in the last few years. We thought the first time it was an odd sunburn (pre diagnosis). It was just a little red, but felt burning/tight. If I scratched at it, flakes would come off. After a few weeks, it went away. But, I’ve never had anything on my scalp, elbows, etc. Just a spot on my cheeks briefly.

With 3 bad joints, my GP did blood work and I came back positive for HLA-B27 so off to the RA doc I went. She did a quick look at the blood work, called it as PsA and put me on MTX and Meloxicam. The MTX was horrible. I’d take the pills Friday night, I’d be in bed nauseous all day Saturday and many times Sunday too. I would then just feel achy all over through the week (almost like that body ache you get with the flu, where even clothing hurts). It would slowly subside, but then Friday would come around and another dose and it would restart. Through the 4 months I did both of those, there was no improvement, or worsening of my tendinitis. But, in retrospect, I do think the MTX may have helped my IBS.

Finally in June, she pulled me off MTX and I got my first Stelara shot (and she switched from Meloxicam to Lodine). The all the time body aches are gone, but there has been no difference in my bad tendons, and I’ve started getting these waves of pain that I cannot describe well. It seems to focus on joints, but it will be all of them, and the closes I can describe it is a steady sharp pain. I used to say “burning” but there is no heat feeling with it. But, it seems to happen more often in late afternoon. Oddly, if I do a light walk outside, assuming it is very warm out, it helps. The RA doc gave me Tylenol 3 for it. Not sure that it does anything tho.

I saw my RA doc again last week. She added Sulfasalazine to my lot of pills. I’ve found some threads on here that lead me to question the usefulness of that one. She also is trying to up my dosage of the Lodine, but Anthem is balking at it.

So, here I am. suppose I am probably in denial, but I can’t help but wonder if I have PsA. My 2 tendons I can trace back to specific overuse events. Granted they won’t improve, but they have no swelling, they just hurt when I use/overuse them. The knuckle was swollen, and still is a little. And I am still extremely stiff in the AM. As to my afternoon aches, I can’t seem to find another PsA person who describes theirs the way I am. I have no skin issues. No “sausage digits”, no “hot” or red joints (but pain), no nail pitting, no eye problems, and no deformities. So, different terminology or different condition? But, I do have HLA-B27, so that’s a pretty strong mark in the “you’ve got it” column. I just don’t know.

I’ve seen on here that there is sort of an umbrella of autoimmune diseases all related. But, if I do have a cousin of PsA, like Fibromyalgia, am I on the right meds? What can I do?

I think generally, I am scared. I feel like I am fading fast and am pretty young. It’s only been 7 months, and lots of various drugs, but I am only getting worse. I have been pouring over internet sites trying to find either some other, curable, cause to my issues, or some magic pill that will somehow make this go away. I feel like I’m already living from pill to pill, planning my day’s activities around when I can take my Lodine.

Clearly I have something. But I don’t know what it is and I don’t know what I can do about it.

Peace,

-Dave

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Hi Dave. I’ll get to the point ‘cos I’m melting in the heat here and, as it happens, my Achilles tendons are giving me gyp. PsA can cause enthesitis - inflammation of the entheses which is where tendons attach to bone. There are a lot of them, unfortunately! And the Achilles tendon is a classic PsA spot. Before diagnosis I had unexplained Achilles’ issues and tennis elbow, these days I think I have my explanation. Enthesitis could well be the source of your tendon pain, definitely worth running ‘enthesitis’ past your rheumy. I personally find that this kind of pain responds extremely well to exercise. Initially it worsens but after a while it can all but disappear if I’m lucky.

Once upon a time my PsA pain was much worse than it is now, but much more clear cut. I’ve done really well on Humira but I’d now say that PsA has quite a repertoire. And that just about anything can hurt or feel yucky in just about any kind of way. Plus perception of pain is an incredibly individual thing.

It’s early days for you with the biologic. For many of us, it’s the bio that cuts it. But they do take a long time to work, weeks if you’re lucky but maybe a few months to really make a difference.

I’m not saying I know anything for sure, we’re not doctors. But the PsA / tendon association is well known. I hear you about specific overuse events but that may possibly be explained by the fact (I think it is a fact) that this stupid PsA thing can target areas of damage, however slight. To me this makes sense as this is our immune systems we’re talking about, so it would be logical to think that the ‘wonky’ immune system goes for parts of us that are weakened in some way.

It’s a fair few months since you were diagnosed but in PsA terms you are still on the nursery slopes, you could be flying along relatively speaking quite soon if Stelara is the drug for you. I hope so. It is scary, it can be depressing, there is hope (lots of it!) and things can and so often do improve.

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Hi Dave,

you and I have very similar stories. Over the course of five years pre-diagnosis, I injured a tendon in my knee (where the shin muscle connects to the lower knee), tore the attachment point of the calf muscle and tendon above my ankle, and had treatment for tennis elbow in each arm. Like you I put it down to overuse–I was very active, running, doing yoga and rock climbing. Figured I had some failure to warm up or overexercise thing going on. But no. I, like @Sybil, have a tendency to get inflammation at the entheses. And once I had injured one thing the injuries kept going back there. Tennis elbow pain was horrific and caused me to stop climbing all together. I could no longer grip the climbing wall nor could I pull up the rope to belay my partner. I believe that the Achilles tendon issue was exacerbated by having a bone spur that presses on the tendon now.

My rheumy is a big proponent of exercise and activity and has pushed me and also given me lots of permission to figure out how best to keep active and work within my limitations. For me, compression garments (calf sleeves, elbow cuffs, knee braces, etc.) have made a world of difference. The constant calf compression when running, the knee tendonitis braces to keep my knees tracking well and the elbow braces if I’m doing anything that requires gripping (like gardening or kayaking) have been invaluable. I wouldn’t say they make me asymptomatic, but they do help me maintain some activities without feeling injured when I’m done. Sadly, climbing had to go as I couldn’t ever recover from one injury before aggravating it again. The weight-bearing nature of the sport has become too difficult.

So, don’t give it all up if you can keep some things. Just know your weak spots (ankles, elbows, etc.) and protect them. And, although I hate doing it to myself, ICE, ICE, BABY! Ice is critical to reducing enthesitis and tendon swelling.

Good luck with Stellara. I hope you see terrific results!

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I understand your feelings. I still get that slight doubt but I think, for me, it’s just that the team has not found the optimal treatment just yet. Keep going Dave.

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Hi Dave, just wanted to say hello and lend my emotional support. I just wrote a post very similar to yours. I am doubting my diagnosis because I have had a negative MRI and ultrasound of Achilles, and even though I know something is not right… it looks normal on imaging. Your description of the needly pain is spot on. I sometimes say it feels like glass in there, or little cuts. I wonder if enthesitis shows on MRI or ultrasound? I do recall my rheumatologist mentioning that word.

Penny

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Thanks for the note and encouragement. This whole thing has been a real kick in the gut. It does keep sounding more and more like I “have it”. I have been pouring over websites, YouTube videos, etc. trying to find some kind of way out of it.

How does it normally progress? The thing that gets me is that, for all of 2016, I had 2 tendons that were bugging me. I go see the RA doc in Jan '17, she puts me on MTX and things just went downhill drastically. Even after stopping MTX and switching to Stelara. I have this ribs/chest pain, my lower back is always aching, even the joints where my legs hook into my pelvis is bugging me, so I’m in pain just sitting now. I would happily go back to Jan, and just deal with the 2 tendons. It’s frustrating that I was at a stalemate until the diagnosis and now I’m falling apart!

I am trying to still be active, but this has really become an obstacle. Pre-this, my hobbies were playing soccer, fly fishing, music concerts, and brewing beer. I’ve had to drop off my competitive league, and at this point am mostly hoping that I can at least continue to ref games. My fingers don’t hurt, but the dexterity is waning such that it’s hard to tie on my flies. My back hurts standing for long periods (or sitting in uncomfortable chairs) so concerts are hard to get through, and, of course, with these new meds, beer is kind of gone.

I’ve been looking for other hobbies, but it is hard considering how quickly I seem to be deteriorating. You mentioned kayaking, which I’d thought about, but with it hurting to sit, I don’t think I can do it for long periods. It just seems hopeless right now.

Anyways, I know I’m kind of on a pity party here. I do hope that all these meds will eventually reverse this. I do appreciate the encouragement from everyone on here. I guess I just give it all more time and hope that some positive change eventually starts to happen.

Peace,

-Dave

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Hey Dave,

there’s no “normal” progression but when this thing starts it has a habit of going quickly. Getting on MTX quickly (even though it wasn’t an ideal situation for you) was the most important first step. It’s that step that helped arrest things a little and got you to Stelara (fingers crossed there).

I know, believe me, how it feels as though everything is over. That life just stops. But it hasn’t, it doesn’t, it won’t. You will learn to adapt, to duck, dodge and weave, and get to a place where you will feel healthier, where you can enjoy some leisure pursuits, and where you can derive pleasure from life. That day isn’t today.

There’s a time, absolutely, for being p!ssed off and pitying your situation. Try not to live there for too long. And there’s a time for a renewed attitude of hope and optimism. You’ll get to the latter. Really you will.

I resisted for a LONG time getting back into exercise as I was so tired of injuring myself. I knew that one of the best approaches (after lengthy conversations with my rheumy) was to literally cover my joints in braces, compression sleeves, you name it. I felt like I looked decrepit in all my accouterments, but they allowed me to be active and feel reconnected to my body–which I had spent considerable time being VERY mad at!

When I kayak I have a stadium seat cushion under my butt, and one under each foot (heel spurs). I also have a kayak with foot pedals so I waste no energy steering. And I wear–you guessed it–wrist braces to support my wrists and to remind me to grip the paddle lightly. I also alter my grip to avoid straining my thumbs. One day, if I need to, I’ll be ready to use adaptive paddle devices to hook my paddle to wrist clips so I don’t have to grip at all.

One of the amazing things about DMARDs and biologics is that they CAN stop the decline. And they CAN lessen your symptoms, so just because sitting is hard this week doesn’t mean it will be next month. I know for myself that when I have my darkest patches, when meds stop working or if I’m in a flare, I go to catastrophic thinking–usually when I’m struggling to get to work. Whenever I have the thought about begging my doctor for a letter so I can get a handicapped parking pass I know that I’ve reached the low point. I don’t mind this moment because I am positive that things will not get worse from here. One winter I had to go twice a week to hydrotherapy in a very small, very warm pool to walk on a treadmill in the water and be blasted by water jets in the process. I hated it as I had to be there at 7:30am but it got my mobility back. Out of the water I could barely take steps but was shuffling along in agony. My hips had gotten horribly stiff, my back was agony, etc. etc. etc. But the meds weren’t working and my body was curling up on itself to protect me. And I was letting it. But when the meds starting to do their job, and at the same time I learned how to adjust my body to not screw up my back any longer, and I got a stand up desk at work, and I was able to walk more normally all of a sudden I was back to walking the dog and doing some yard work. But when you’re in the middle of it–it’s a dark place.

I found massive mental comfort in Toni Bernhardt’s book “How To Be Sick”. I got a lot of coping tools from that book. I also went to therapy to learn how to embrace and not fight my new situation. I got to a place of acceptance about PsA and now, rather than refer to its impacts on my life, I like to think about how I have adapted to PsA. A subtle difference for sure, but I has really helped me to stop being angry about it all.

I’m so glad you’re open to talking about all this, Dave. Please know that in doing so you’re helping lots of people who are reading your posts. Be well.

1 Like
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There isn’t anything worse @dwlemen than your first flare when you have a name for it. Well maybe your next flare after you have started treatment and think things are getting better.

I flyfish more than ever BTW I made one change - I got rid of my waders. I love the cold water and I was terrified of falling.

I would start developing a Brew that is Gluten Free and contains NO sorgum (sorgum leaves a nasty after taste) (hint-rice syrup) Hopping is difficult too. (Foogle or Sazz) When I got the right one its changed my life. My favorite before PsA was an India Black Lager. The wort was heavily grained. It almost always brought on a flare. (although with a starting SG of 1.06, I always blamed it on “snake bite”)

In any event the flares pass. I honestly believe (okay this is wierd) Flares are our bodies way of telling us (and reminding us) that this is serious stuff and that it needs treated constantly.

Also if Stellara isn’t your new partner, consider Humira, it works great for IBS

2 Likes
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So, my attempt to keep some normal things backfired. I played a bit of indoor soccer on Tuesday and it appears that I now have a hernia. Go in next week to have it verified.

Does anyone know what being on biologics (Stelara) might affect having surgery?

Pains have also moved onto my ribs. This is getting out of hand. It is hard to not blame the treatment. I keep adding more drugs and just get worse. I am now taking, along with Stelara, lodine, sulfasalazine, tylenol 3, cymbalta, and a week of prednizone.

I do appreciate all the words of encouragement here. This is such a bad hand. Hard to not feel hopeless.

Anyways, I am concerned at risks to fix the hernia.

Peace,

-Dave

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I’ve usually had to hold my Enbrel 2 weeks before surgery and 2 weeks after (after stitches are removed).

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Ok, so I wonder what I do since Stelara is an every 3 months dose. Hopefully this can be fixed soon.

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The rule of thumb until recently has been four half-lives before the operation. IF its major surgery. A mesh repair for a hernia is NOT usually considered major. Follow your Rheumies advice on this NOT the surgeons. Data is changing and they are dcing the meds a lot less frequently. Stelera is new enough to you, that you are likley still in a loading phase and it may not be necessary to stop it at all…

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A few quick updates…

For my hernias, having surgery on 8/21. I asked my RA doc about concerns with my meds and a surgery and her response was “I don’t know, ask the surgeon.” He didn’t think any of it really mattered, so there we are.

For my golf ball and “broken rib”, I told my RA doc that prednisone seemed to be helping but it has crept back. She prescribed gabapentin. I’ve done some research and I’m not sure how that is going to help with obvious swelling and isolated pain. If anyone out here has direct experience with this drug, please feel to chime in. To recap, there feels like a golf ball directly below my sternum. If I suck my gut in, you can actually see it. If I sit, or lay on one side, it’s not bad, but the longer I stand, the worse it hurts, to where breathing is hard. Gabapentin sounds like it’s for neurological pains, like Fibro, and not pain associated with what, to me is extreme swelling.

I haven’t started taking that yet. Today I FINALLY get to meet a different RA doc. Months ago, I asked my GP for a second opinion on all this. We set it up, and the date is finally here. Hopefully she will have some better ideas on how to get me functional.

Peace,

-Dave

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Gabapentin is used for pain from neuropathy. But does that mean that it can’t be used for other types of pain? I seem to remember using it eons ago for back pain. So I would think that it can be used for other pain. What you’re describing? I don’t know.

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I take gabapentin for neuropathy in my feet. It’s used to treat epilepsy, too. I think of it this way: the inflammation is there all the time in the small joints of my feet and it squishes the nerves so they get tired of sending “hey we’re being squished down here” messages because they go unanswered so the nerves just stop sending messages until they send that big old “OMG WAKE UP I THINK MY FEET MIGHT HAVE FALLEN OFF AND I DIDN’T NOTICE” jolt. That jolt and painful pins and needles jabs in my feet were the reason I started on it. It has helped a lot and, bonus, it can make you a bit drowsy so it has helped me sleep better, too.