Remicade

Been on remicade for less than a year. Taking it every 4 weeks now. I have terrible joint pain in my hands and wrists. Last week it was my left hand today its my right. Shoulder sometimes too. Is this normal? Did see rheumatologist two weeks ago. Go on the 28 for extensive blood work results. Does this sound normal?
Thanks, Faith

Yes had that test done 2 months ago. Gastro upped the remi to every 4 weeks and upped the dose. I wrote them today they said exactly what you just posted. I need to have the levels checked again 1 to 2 days before next infusion. I just had the infusion 2 weeks ago this Thursday. My hand is really swollen. Never had any thing like this with entyvio.
I did have an allergic reaction the last 3 infusions. Very itchy . They needed to stop it and increase Benadryl and fluids. Then i was ok. Otherwise I’m in remission with UC.

Faith,

I've been in Remicade since 2015. My GI started me on dual therapy at the very beginning with methotrexate. That may not be a good option for you if you are a younger female that may get pregnant. (Plus some of the states have enacted legislature that prohibits methotrexate for females pre menopause. ) But there are other dual therapies that may help lower the antibodies you develop with Remicade. I've stopped methotrexate, developed antibodies, started it back up and it's driven my antibodies back down to 0. That does not happen for everyone. My GI said I have been one of the lucky few that it works like that on. So talk to your GI about the possibility of a dual therapy. Perhaps that will be an option for you.

My GI also indicated that patients with a higher titer of Remicade levels have a lower chance of reactions. It varies by patient. My magic number is a minimum of 10.... 13 or higher is best. Below 10.... I have vomiting, joint pain, long lasting headaches and my head itches like crazy.... So I have to take benedryl daily for almost a week after my infusion. Some GIs want their patients levels to be at 5...... Which would be a challenge for me.

Do you itch after the infusion? Do you have hives?

On the joint pain.... It can be an extra intestinal symptoms that can be intermittent and move from joint to joint. I finally went to a rheumatologist so she could prescribe pain cream for it.

Clo

Faithmac,

I am postmenopausal so I don't have to worry about methotrexate being limited to me. A younger female person I mentor with IBD is having a very difficult time. She's "shopping" pharmacies to try to get a refill. She's so frustrated.

Your antibody level is high. I start "itching" at an antibody level of 9 to 13. Your Remicade trough level is low. That's probably why your GI is stepping things up. I've been back on methotrexate with my Remicade for about a year and it's taken that long for the intense itching to stop. The last 2 or 3 infusions I have only had to take benedryl after the infusion (for a headache...as the itching is almost gone) for 24 hours after the infusion..... So it's getting much better. My GI thinks that with another 3 infusions I won't have to take the extra benedryl at all. Then we are planning to start lowing the "premeds" prior to the infusion and eventually see if we can do away with them. It's been slow going this time.

On the Diclofenac Sodium Topical Gel 1%... You may be able to buy something similar over the counter to help you get by. The prescription is more affordable for me because of my insurance. I have to use to faithfully 3x a day for at least 2 or 3 days to see really good results. So it can be a hassle but it helps.

On the itching... I have also developed eczema and psoriasis as a result of IBD... I scheduled a derm appointment right after my infusion and my scalp had broken out in a rash. The dermatologist prescribed a steroid head spray for when it was bad and a cream for my skin just in case I had issues there.

It's a balancing act for sure.

Please let us know how it goes.
Clo

Glad you're in remission. Sorry your medicine is causing these side effects though. Sounds like antibodies to me.

So if for some reason i have to go off Remicade, what’s the best next option? When going on Remicade doctor actually gave me a choice of meds which I can’t remember the one he was thinking of . He said to give it a try even though i already took Humira. I think it’s a similar drug. I don't mind the infusion. So that wouldn’t make a difference either way.

Fm, sorry to read about what's going on. I went on Remicade back in 2004 & back then many gi's would put their patients on Imuran at the same time, mine did. He explained to me it may help to ward off developing antibodies. Over a few years of being on 10kg every 4 weeks I developed antibodies & drug induced Lupus. I loved Remicade because it worked so well for me, I have crohns. One thing I have noticed over the years is drs are not putting Remicade patients on Imuran at the beginning. I saw this back when the crohns forum was active.

If you have developed antibodies, I am not sure adding Imuran or Methotrexate will be of help, I just don't know. Your next step would be to consider one of the JAK inhibitors?

Aside from this mess how are you doing since your accident?

Xeljanz next.

None. And my boyfriend also takes it and also has none. He's been on it for 3 years.

Hi I poop
Taking all the premeds. They do the infusion 2 1/2 hours. Was getting real itchy until they upped all the pre meds , solumedrol double Benadryl Tylenol and extra fluids. So I’m ok on that end. The joint aches started a week after infusion. Not at the 8 weeks at first. Then about 6 months in it started. Had the levels and the antibiodies done. The levels were basically non existent. So had 2 every 4 week infusions. That’s when things got worse.
Due for next infusion on march 9th . Taking the level and antibody test on the 7th. Rheumatologist this Tuesday, she took 17 tests with blood and X-rays of SI joints. Had quite a few abnormal readings but i have no idea what they mean. Rule all that out first.

I already tried Entyvio, simponi and Stelara. All worked some for a few years. Did really well on Entyvio until i had a bad accident. Was hit by a car while walking. All the pain meds and hospital stay screwed everything.

So what’s is next have no idea. Just know these joint aches come and go and are horrendous. Different parts of the body. Really crazy.

I do see a specialist because of dysplasia twice. So i have confidence in him.
Just have to wait and see whats next .

Faith

Beyond the aforementioned biological meds there's a number of small molecule drugs like xeljanz/rinvoq and zeposia.

Take it back my opposite hand from yesterday is swelling up and knuckles are sore. Does this all sound like antibodies. Strange ! I’m afraid to tell anyone. I sound crazy

Faith

Oh my, is this your lawyer asking for information about Medicare & your auto insurance? If so, your lawyer should have sent Medicare a letter stating he/she represented you in this accident. Medicare would have updated your lawyer how much they paid in medical bills.

Under Medicare any time a person is injured in an accident caused by a third party that is insured, Medicare is entitled to reimbursement of funds they paid on medical bills.This same law applies to private insurance. The total medical expense are part of proving damages & the reimbursement comes out of your settlement. Your lawyer should have explained all of this to you. The insurance company typically issues a separate check made payable to Medicare & that check goes to the lawyer to send on to Medicare.

Since your case just settled I will assume you have not signed anything or been paid. You need to contact your lawyer Monday & ask about the Medicare interest plus why your insurance paid 10k. It was either personal injury protection or med pay. If any of your medical bills got paid under Med Pay they have to be reimbursed out of the settlement money. I am not trying to slam your lawyer, but this is information you get in the beginning of the claim, not until it's settled.

The top of my right hand & all knuckles swell up, the skin is hot & red. My dr says rheumatism, lol. I use OTC Voltaren on it. It can be pretty painful, especially when trying to grip things.