I am a failure at 2 different PSa meds- Otezla mostly cleared my skin but did nothing for the arthritis. It also made the depression much worse to the point of suicidal thoughts . Orencia was the Rheumatologist’s 2nd choice but that has inflamed the Psoriasis worse and the arthritis pain was off the charts. My blood pressure was never high before is now high 184/95 today when it used to be 120/80 my weight has creeped up ( +30 in 6 months) and my thyroid medication has had to changed drastically a few times recently when it used to be under control for a few years. I am dizzy a lot lately and I fell last week ( I have the green and yellow bruises to prove it). I do use a cane (walking stick) but this time it failed me. Dermatologist wanted me to try Tremfya but Rheumatologist objected and got snotty with me as if i was the one googling meds on the internet. When I had the first bad reaction to Orencia I called the Rheumatologist to tell her but she didn’t return my calls. When I had the second infusion, I became nauseous and dizzy she came in at the insistence of the infusion nurse. Yes she agreed Orencia isn’t working for me. Meanwhile, I was as sick as a dog Thanksgiving. The Dermatologist wants me to try cosentyx. Rheumatologist wants to try Humira. Hubby wants me to listen to Rheumatologist but i’ve known dermatologist longer. Rheumatologist refuses to discuss how to coordinate care with my other doctors ( endocrinologist, dermatologist Primary care doctor) for some unknown reason. Meanwhile I am having extremely dry geye issues and I am under the care of an eye doctor.
I am tired and frustrated. Most days I can’t write, type without pain or tie my own shoes let alone drive. I barely got a pair of mukluks on my feet today because of the swelling - this is my new normal almost everyday. When I mention back pain the Rheumatologist dismisses it as not related to PSa. I don’t want to take prednisone for every flare up anymore. I don’t want pain killers but I don’t want to live in this level of pain anymore.
My last appointment last week was the bloody end. She noted I have “significant “ edema in my legs and arms so she sent me to my primary doctor. When I mention the intense pain spasms I get she poo pooed that as fibromyalgia. While I did not attend medical school I do have a limited understanding of the pain points of fibromyalgia. These pain spasms occur throughout my body - legs chest hands, elbows etc. Primary says edema is from weight gain due to depression/anxiety and lack of exercise. My hands and feet are freezing - Rheumatologist says it’s not Raynaud’s syndrome. I feel like i’m on a carousel that I can’t get off of. Hubby wants me to change Rheumatologists. Meanwhile the stress from all of this is really getting to me physically as well as mentally. I used to look forward to Christmas. Not now. I can barely get out of bed. On bad pain days I don’t. I feel like I am fighting an army all by myself and i’m losing the war. The winter knocks me down hard. It’s already cold here and I don’t know how much more I can take.
All this is frustrating, absolutely. Sometimes clarity, good communication with doctors, joined-up care etc. can ease our minds even if the body’s not doing any better. I absolutely hear what you’re saying.
I don’t have to tell you that it’s not you who has failed, I’m sure you know that really.
I’d leave the field of battle for Christmas I think. Sounds like you have a very nice husband who supports you in trying to find a way through. Can you two just make the best of the holiday season, doing as little as poss, spoiling yourselves, letting the doctors go play with their stethoscopes?
And maybe come back fighting next year … ? Can we help when you’re ready? You know you will get all the help you need here to perfect a battle plan.
I can hear a lot of complexity in your post. It can be so overwhelming. And this is what I also hear;
It sounds like you feel your Rheumy is dismissing you (even if she is trying to do her best by you),
Your meds have failed, not you,
You need to make a decision about a new med, but it’s so overwhelming, with so many sources of advice,
It’s so hard to make that decision whilst your eyes are dry and hurt, you get endless pain spasms, everything feels cold, and you are so tired you can’t think properly.
And it also sounds like, despite having a husband that is supporting you the best he can, you feel very alone.
Well, the first points we as a community will probably be able to help you with. But you are definitely NOT alone ️
Awww… gosh SharonB… you really are having a rough time of it… I’m not at all surprised you are feeling tired and frustrated!! Who wouldn’t?
I really do wish I was able to find the right words to help, but words simply wouldn’t be enough, and I “get” that… it is not you that is the failure here, please don’t take responsibility for things are beyond your control. The meds aren’t working for you, unfortunately that seems to happen at times
I am wondering if a second opinion from another rheumy might be a possible option… perhaps your dermatologist can recommend someone who they know will work “with” them to find the right meds for you… just a thought.
Thinking of you through this difficult time. Big hugs
Good grief! There’s so much going on for you I bet you have no idea how or where to start. Being under-/un-treated is a terrible place to be.
Do you like your PCP? Can s/he help here? The coordination of your specialists is not an easy job and as an untrained professional you’re being put in the position of coordinating your own care. If you like/trust your PC and have easy access then I might think about an update visit with her to figure a path forward.
As for the biologics that didn’t work…YUP. It STINKS when they don’t help and it must be so much worse when they actively make you sick. I tried three in relatively quick succession this year. Two out of those three did absolutely nothing for me. But I had to give them a fair shake so went about 6 months feeling untreated and unloved. It is horribly frustrating.
Before you bite the bullet on switching rheumatologists I think a trip to your GP is in order. And you may eventually interview a new rheumy, but for now, focus on getting yourself to a place of more stable health (physical and mental) and using EVERY resource available to you to get there (doctors, prescriptions, heating pads, partner, friends, family, cleaning service, carry-out food…).
Hoping for a calm, relaxing, stress-free holiday season for you.
It takes more than one ride on the carousel ride to grab the golden ring. But when you grab it, you forget the rides you didn’t and up like us here who seemed like we grabbed the damn thing first time. We didn’t. Hang in there your time is coming
If it helps, I’m on my 6th biologic. I’ve done both Humira and Cosentyx (as well as a few others, lol) - Cosentyx was by far my favourite of the two, as I had minimal side effects (but it’s such a toss up who will react well to what don’t let that sway you). However, neither worked to the degree that I need them to so I just started Simponi Aria infusions. My last biologic was Orencia. The Orencia also gave me a horrible psoriasis flare - that I’m currently coating in coconut oil which has been soothing (I even put it on my scalp on the weekend after a shower and let it soak in with a warm towel wrapped around my head - it seems to help loosen the plaques and is, frankly, kind of amazing - though I do have to wash my hair after, lol). If you have access to it, I totally recommend trying it and seeing if it helps (as long as you’re not allergic, of course!). I resisted for so long because it’s such a fad at the moment, but hey, it seems to help.
It sounds like you’ve had a tough row, and I wouldn’t be surprised if you change Rheums as not wanting to co-ordinate care would be frustrating to say the least. Anyway, I hope it gets better for you soon, and that you find some relief - temporary and longer term - soon!
I hear you about the carousel ride. I loved Humira - it was like I didn’t even have a disease. Unfortunately, my body developed anti-bodies to it and it stopped working after about a year. I am trying methatrexate and Cosentyx. Still have a lot of pain but am giving my Rheum a chance to keep tweeking the methX.
If your GP and dermatologist and Rheum doc are not talking to each other, see if your insurance can help with a patient advocate. You pay these people - they work for you. Sometimes docs just don’t have good people skills.
You are not alone. This damn thing is a tricky business. Enjoy the holidays and then tackle it hard in 2018.
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