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Living with Psoriatic Arthritis (PsA)

On to Cosentyx--update

#1

I’ve been having issues with my left upper thigh and a bit more fatigue than normal since Christmas. It has waxed and waned (better when I had an asthma flare and was put on steroids in January; then worse). It got really bad last week, to the point where I was praying to make it to yesterday and my follow-up.

I start talking and the NP knows exactly where I’m going. Turns out, enthesitis and tendonitis means the PsA has now moved into my upper thigh–we hope for a short time.

Of course, the larger implication is that Humira is no longer doing well at controlling my psoriatic arthropathy. I beat the textbooks–Humira was the first biologic I tried. I got 5+ good years out of it. I may be able to go back on it down the pike.

I’ve also failed the three DMARDs I tried (MTX, Levlunomide, Sulfasalazine). NP refused to even consider Plaquenil because of my family history of macular degeneration.

We’ll see how long it takes for health insurance to give the okay and for me to begin loading doses of Cosentyx. I draw the line at dyeing my hair pink like Cindy Lauper (purple, yes; pink, no).

My pulmonary appointment resulted in blood work to see if I have Eosinophilic Asthma.

I told Paul that I’m fortunate. I’ve been dealing with PsA since at least 2006; it simply decided in 2018 to move into new territory. Dealing with asthma is also familiar. I don’t feel as badly before I was diagnosed, but I know now that I can feel better.

I don’t have to learn about something new. I have Paul. I don’t have MS or ALS. I have health insurance. I have a rheumatology and pulmonary team I trust. I have a job I love.

That’s not to say that it’s not going to take time to put all this together, including praying that I get even half of the results on Cosentyx that I did on Humira. This is a hitch (pretty good sized one) in the way I get along.

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#2

A hitch in ones git along just means you cowboy up and you always do. Hang in there! As Conway said:

“don’t call him a cowboy
Until you’ve seen him ride
'Cause a Stetson hat and them fancy boots
Don’t tell you what’s inside”

You have plenty inside!

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#3

Good luck with the Cosentyx. I tried it after Enbrel, it helps some more but not enough. After 9 months on it doc wants to go back and try Humira, even though the Enbrel didn’t do much. He said sometimes one may work when another didn’t.

I have got to find something to give me some relief or I’ll end up on disability. Can’t add MTX because liver numbers are too high.

Hey #tntlamb, what do you think about going to Humira after Enbrel not working much? Any other ideas on something else to try??

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#4

@tntlamb might have more info, but certainly Enbrel and Humira have quite different actions, even though they are both TNF-a blockers. One really obvious example is that Humira consistently puts most patients with Crohn’s into remission, whilst Enbrel never works, and often makes it worse.

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#5

@ all-I went to Taltz after Cosentyx. I am about 4 months in after an initial couple months dose. So about a two month gap in there. Still waiting to see the results. I figure I will get a blood test not too far away. I am still having a hard time getting control of the situation. I am rotating prednisone with meloxicam and hydrocodone. I can’t stay on the prednisone more than 14 days. Not sure if I am dealing with flares or if something else is amiss.

I got about two years of Humira for psoriasis. I had reduction in skin events. However, I started getting extreme swelling in the hands while playing guitar at a gig. That was my warning sign that I had PSA. Had to shove my hands in an ice chest. lol I have tried cimzia, enbrel, stelara and one more which could be remicade. I cannot recall. I have tried Otezla as well. I can’t do MTX due to liver concerns.

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#6

Interesting you mention Conway Twitty. I’ve been listening to Chris LeDoux (Cowboy Up and Tougher than the Rest, among many) this morning.

I’m still not getting pink hair.

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#7

Good for you! Glad to know you like BOTH kinds of music… Country AND Western.

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#8

LOL. I grew up listening to Bob Wills, so that I am.

With apologies to Ron White, I’m not a big fan of Garth Brooks (who is allegedly country and western) and definitely not Donny or Marie.

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#9

Funny you mention Marie, met her, ate with he visited with her once. I know you are a defense advocate but hope you’ll appreciate her role in establish vertical restraint net sales and MAP pricing in the business world. There was the Marie Osmond Dolls a number of years back (really just a knock off of the American Girl Dolls) Supposedly they were not to be sold except through specialty retailers. There happened to be one who set up an antique shop halfway between missoula and the Idaho border literally almost 100 mile from anywhere. It was in an old power station for the railroad when it took electric trains to get over the mountains. In a good week they might have seen two or three customers mostly they sold stuff on ebay. But they decided to sell marie Osmund Dolls though they weren’t allowed to be sold on the “net” no one though said anything about “user groups” basically just forums for collectors. These folks sold hundreds if not thousands of these dolls. There was a sales contest for which the prize was Marie Coming to the winning store to autograph dolls. This little “store” won and never gave it a thought Marie and her “people” showed up on the appointed day. I was there picking up a bathtub (bought on ebay) and there she was sitting surrounded by dolls to sign and of course no customers. The owner had sent his wife to the bar up the road for a 12 pack of PBR (he went all out for such an occasion) and a bucket of chicken. I was invited to stay and did (can’t resist broasted chicken. Worked out well for me as her people helped me load the bathtub in the truck (cast iron clawfoot - very heavy) had a great afternoon, nice lady and a good sport but she can’t sing. The proverbial smelly stuff hit the fan and turned into a big hulabaloo allowing certain price and trade restraints now moot since amazon hit the picture.

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#10

That story made me splutter my coffee again! What an interesting life Mr Lamb…

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#11

Hello Sixcatlaywer,
This is my very 1st post on here. I have been receiving emails with links to conversations but have yet to actually participate but something you said caught my eye…that you are having some issues with your upper thigh. I also have been having pain in my upper thighs, mostly my right one but both. It feels like I have a strained muscle or a pull or something, it’s weird. I haven’t mentioned it to any of my Docs thinking it’s just a thing that will go away but it’s not. Have had it for about 2 or 3 months now consistently so I found it really interesting that you mentioned it. What do you think it is? I guess I should mention it to my rheumatologist. I never had any health issues for my entire life up until four years ago when I was diagnosed with eczema and psoriasis on my hands and feet and PSA. I also have the standard osteoarthritis. I was a Hairdresser for 43 years and just retired 2 weeks ago! Whoop whoop! Doing hair with those issues wasn’t fun so I’m glad I didn’t get it sooner. Anyway…
I have wondered about possible tendon issues and this thigh thing. Do you think it’s associated with the PSA?
Stacey

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#12

Hi Stacey,

PsA just loves messing with tendons and ligaments too as well as joints. It even loves messing with all the bits and pieces attaching your rib case together as well. For many the issues with just tendons and liagaments can be quite something.

Hope this helps. I would mention your thigh issue to your doctors, most definitely.

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#13

Ok, I will mention it. I have a tendency to try to not be to much of a complainer and try to see the glass half full but I often wonder if I’m not giving my Docs enough info. about what’s going on with my body. After reading topics on this site which are very helpful and informative I’m beginning to realize that I need to be more pro-active. Ignoring things won’t make them go away!

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#14

Just a thought…I have PsA, and years ago, prior to being diagnosed with PsA, I was diagnosed with SI Joint Dysfunction…this is very common with PsA. This is flaring in the sacroiliac joints, which causes a burning and very painful swelling in the middle of the buttocks. You can actually press in on the direct area and know you have hit the spot. This also pulls on the femoral muscle…mine is on the left side. Sometimes, it almost takes me to my knees. If you feel burning in your buttock, you might try icing it…it reduces the swelling. There are also many u-tube videos if you find this to be an issue. Personally, for several years, I would go to chiropractor and he would release it…immediate relief. I have a hard time getting release now, and I have so many appointments all the time, it is just frustrating. I live miles from everything, so keeping appointments on top of work adds to my stress.

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#15

Like you, I thought I had pulled something—until it kept on and on…and on and on. PsA loves to torture tendons and ligaments. I knew something helped the leg bones and hip bones move so we can matriculate (down the field). I didn’t realize until I did my own research and the NP showed me just how many dang tendons and ligaments are in that area. And they’re all just waiting for PsA to say hello (at least for me).

Judging by my own experience and my discussion with the rheumy NP, I absolutely think the thigh issues I’ve had off and on for the last six(?) months, mostly on since Christmas, PsA has found a new place to poke its way into my life. I have what seems to be permanent tendonitis in my hands (swelling just below my fingers) and a ton of enthesitis that waxes and wanes in my ribs and feet. Why not add another place?

Talk to your docs.

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#16

That is interesting. The burning feeling you describe sounds similar to a burning feeling I get when my ribs hurt.

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#17

Wishing you good results with Cosentyx! I failed on it recently and looking for a new biologic.

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#18

I’ve finished the five loading doses and am feeling better. The enthesitis/tendonitis, overall is better, but I’m still having issues in one spot on the far upper part of my left leg. It’s on my list to talk to rheumatology about on May 6.

During the “loading” process, I noticed a distinct drop on Tuesday before I injected on Thursday. I injected my first “regular” dose last week. It’s Thursday and I’m in the last afternoon of two days of meetings. I’m feeling it but not awful like I was at the end of Humira, the gap between and loading Cosentyx. I am, however, still taking a low-dose of steroids, so I’m not sure which is which.

We’ll see what happens next week because I have four full days of training, the third of which is on my “regular” day.

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