Remicade problems

Went for my Remicade infusion today, my veins refused to except the infusion, after four failed attempts, my nurse gave up, so have to go back tomorrow. She said she only had this happen to 3 patients in the last 40 years! I think the problem was my Raynaud’s was flaring, and the blood would not flow. The first attempt, had good flow, but infiltrated in 10 minutes, after that the others refused to flow at all. I also hydrated with 2 liters of “liquid IV” and used a heating pad on the area.
This is the last month of Remicade, I am switching to Consentyx next month, Remicade is just not effective any more. I hope it works for me, because I am having a lot of spots flaring, at the moment. Both feet are now acting up, at the 5th metatarsal bone, I am getting cold laser treatments that help a little. It would be difficult with two walking boots!
Has anyone had success with Consentyx?

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You are switching from a TNF-alpha inhibitor to an IL-17 inhibitor so it may be a longer gap period but at the same time cosentyx has a much better loading dosage, more frequent dosing and a much more variable dosage than do other biologics which is a HUGE advantage. FWIW though not scientific by any means the folks in my infusion center coffee clatch love the change especially as far as the “p” is concerned. SEVERAL mentioned the reduction in Raynaud’s. BTW you might want to visit our Raynaud’s Community. It runs hot and cold there. I know your contribution and experience could really get things moving…

TJ

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Thanks, I will check it out. Been dealing with the erythromyalgia side of it, for 32 years, did not notice the cold until about 5 years ago, might have had it before, but was more focused on the hot feet and hands then the cold. My first Rheumy, who was old school, did not think I had autoimmune, but “just wear and tear”, was surprised when she took my hand, she asked if I was going in shock! She was questioning here DX toward the end there, then she retired, to go “fishing”…
The remicade is flowing today, they had to throw out the one they mixed yesterday, as they did not know if it would be okay, once mixed. So $5k lost… They have a agreement with the drug company to replace it free.

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Oops, I am actually going to start Cimzia, got mixed up yesterday…
Managed to have my hopefully last Remicade infusion today, they had to mix up a new batch, as they were not sure if the shelf life when it is mixed… $5k wasted…

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Hey Jon, Cimzia does a great job for me, easy fortnightly injection, no SEs except often a mini-flare day after injection (very mild only lasts for a day). Good luck!

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Good to know, thanks!
A friend that does trigger point therapy reminded me of how tight my muscles used to be when he treated me before DMARDs and biologics, I think we sometimes forget how much these drugs help us, after we have been on them awhile. Also it is difficult to separate the chronic pain caused by damage, versus the actual current pain from PsA. This muscle tension and chronic inflammation took it’s toll on the joints especially the feet, neck and back. It is sometimes difficult to inject the MTX because it will hit a patch of calcium in the skin, caused by the chronic inflammation, it bends the needle!

Anyway, the first attempts at Biologics, I think were not appreciated because I was expecting to be pain free, it would have helped if the doctors had explained it a little better, maybe.

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It’s been pretty good for me. But I’m so bad, it’s all about minimizing the pain. It’s mostly in tendons. I just TRIED to play tennis with my daughter and got tendonitis after half an hour. I got that infected directly today with steroids. My flare ups are managed with either Prednisone or torodol. Humira work for a while, stelara not long, cosentyx pretty good so far. Again… Mine is ALL in my tendons. Crazy bad.

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I have been loving remicade - finally something that makes me able to use my hands and feet without tons of pain. Good point about previous permanent damage and inflamation pain - some days it is hard to remember how bad things are without any treatment. Unfortunately, I became immune to Humara and Consentyx didn’t do a thing for me. I find something that works and now my insurance won’t pay for remicade after November. They are switching me to inflecta. I am worried but what can I do? Hope Consentyx works for you!

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Remicade stopped working for me but Cosentyx has been pretty good a year in.
I noticed you have erythromelalgia too tho which I’ve been struggling with for the last few years and is getting worse. Lately I’ve been getting burning palms and soles but with freezing toes and fingertips - but my hands are still red not the blue I associate with Raynauds. Is that how your Raynauds started? Have you found anything that helps your erythromelalgia?? The pain is making me feel like I’m losing my mind and is interfering with daily activities. When the erythro and the PsA pain are kicking in at the same time it’s hard to do anything with my hands (especially) and feet. Any help or advice would be greatly appreciated!!

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Yes, my Raynauds started with burning feet, had it for 32 years, I was dx’d with Raynaud’s about 4 years ago, but in retrospect had it much longer. Also have peripheral neuropathy.
Treatment is tricky, you can use ice packs when it is hot and heating pad when cold, but if you go to far, it will flare the opposite condition. People have tried sodium blockers, aspirin, and sometimes they find that it is associated with auto immune small fiber neuropathy, they can treat that with a infusion.
I have learned to mentally block the pain to some extent, otherwiseI would have gone mad! I use meditation techniques.
There is also a forum for Erythromyalgia, Livingwitherythromyalgia.org
Good Luck!

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Wow! I don’t have erythromelalgia! And no Raynaud’s. I hope you continue success with cosentyx! I find Prednisone gives some relief as well.

Peace.

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Wow Jon! So interesting that you mention the skin!

I keep trying to tell ppl how uncomfortable it is bcz the skin around my nails gets thick then you peal it and it bleeds. I’m trying to cut it with nail cutters when it’s soft from a shower. It’s AWFUL! So here I’ve been diagnosed for only 3 yrs…I’m 51. In my 20’s and 30’s I used to get the pin pricks in my nails… LOTS of them.

Gosh it sucks to be neglected for so long. Ok… Done with that negative rant.

I’m happy to get some relief now. I just wish they had pain medicine to go along with all the anti-inflammatory that we take. Bcz it’s never enough.

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I got some Norco from my Pain Doctor for breakthrough pain, only asked for about 10 every 2 months, also take tramadol, mainly for my back pain. Doesn’t do much, but takes the edge off…

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