Flaring on Remicade

[arlcollins]

I am scheduled for my next infusion next week (my 4th). I have noticed over the past couple of weeks that I am getting alot of little spots on my legs and this morning it started on my stomach, which had been clear. I have asked my derm about doing lights along with remicade and am waiting to hear back from her. I also noticed after doing alot of gardening and walking this weekend that my knee is a little sore. Is this typical? Is it because I am nearing the end of the dose or because I am stressing out about Thanksgiving and all the stuff going on. I did not clear like a lot of people did on remicade althought the P and PA improved. I am thinking about giving it one more infusion and if the P doesn't clear I may switch to something else.

[RebeccaSK]

I'm definitely flaring on remicade, although I don't think it's common. I'm hoping, hoping, hoping that we just need to make some adjustments. I cleared almost entirely in the beginning. It was glorious!

But since I've developed more psoriasis in places I've never had it and even developed PPP. That is not glorious. I'm awaiting some test results because I have also been making boils and the doctor is checking me for staph but the rheumy has definitely decided that I can go on 6 week intervals. We will talk more thoroughly next week when I see him for the regular appointment. I think 6 weeks is still too long as the psoriasis and pain flares happen much sooner than 6 weeks.

[JesseLou]

I don't know a thing about remicade, as I'm on MTX. I have flares every few months, even when the MTX is giving me good control. The difference between being on the meds and not is that the flares are further apart, often caused by a bacterial infection, and always localized in one of the joints that flared before the meds were started - no new joints.

Perhaps all the DMARDs are like this?

[vlu28]

Yes, I flared on Remicade. I would get about three weeks of relief from each infusion, then the flare would start. The joint pain and swelling would return and this last time I had pustules break out in places that have never been affected by psoriasis before. My rheumy gave me a choice of continuing Remicade at an increased dosage every six weeks or switching to Humira. I opted for Humira and so far I'm very pleased with it. My skin hasn't cleared, which doesn't surprise me since I didn't clear on Enbrel or Remicade, but the lesions are much more manageable. Most importantly - at least for me - is the PA improvement. I knew I felt bad before, but I don't think I realized just how truly awful I felt until I started feeling better. It's amazing! Here's hoping it will continue.... :)

[docmks]

Hi all,

I've been on Enbrel now for a year; and Enbrel plus MTX since July. I am still getting flares. And I am getting joint involvement in new joints (two new interphalangeal joints in the past couple of weeks). My rheumy wants me on Remicade but reading your posts I wonder if it is worth the test. I am sure that it is like every biologic...it will work really well for some people, and not so well for others. Any advice for me?

mk

[vlu28]

I think it is just like you said - - it will work very well for some people and not as well for others. You won't know until you give it a try!

[LoriASoCal]

Yes, the wearing off of the remicade is a huge issue for me. I'm on a six week interval now but all we have done since I started is adjust amount, adjust interval. I love the great effects of this drug but the wearing off has made me feel as though I might be going e-derm a couple of times, not to mention the horrible pain my joints end up in towards the end. I also start breaking out in places that have been clear for some time. So it makes me a bit anxious about what is to come next. So far, remicade is still worth it for me. It definitely works well with the mtx.

I'll keep working with remicade as long as I can and then next stop is humira. I'm concerned because I heard humira doesn't work so great for the P part. Remicade seems to work great for both. I think they *doctors,J&J and mostly insurance companies are creating monsters when they drag people on too long between infusions with this drug as it seems to have serious rebound effects. At those times I've increased my mtx to stave off that pre ederm feeling, until my next infusion. Ah well, it's still better than anything I've ever had.

Lori

[arlcollins]

This past week the pain in my knee has been horrible at night,but then it feels better in the morning. Right now it is stiff but doesn't hurt. what accounts for the intermittent pain? Driving yesterday it started and I thought I would have to call my husband because I didn't think I could drive anymore and then it stopped. Has anyone experienced this?

[RebeccaSK]

arlcollins, it sounds as if we are twins! Yesterday, while I was in a sort of half-crouch grabbing something from under my desk, my knee just sent a terrific pain coursing through my body. I was frozen, there unable or maybe unwilling to move. That was a little warning sign for the pain that was about to start. HAH! I could not sleep longer than 2 hours at a stretch last night due to the knee pain. I did make it into work today, but left after two hours. I just couldn't take the pain of the crouching and ladder climbing I have to do in my retail job.

I see the rheumy tomorrow, thank God.

[RebeccaSK]

Someone please tell me what I'm doing wrong because I really don't understand what just happened at the rheumy's visit. Feels like I just wasted my time, not to mention my money spent on gas and parking.

I was to see the rheumy and have an infusion today. Almost 10 days ago, it was decided that I would have the interval between infusions shortened to 6 weeks and to go up on 1 mg in dosage due to the fact that I was having such a bad P flare and some pain. I didn't go in sooner this time because I was making boils and I was waiting for a culture to come back to see if I had staph. I didn't have staph but I was to continue with the antibiotic. I have like 1-1/2 days left on it.

I was looking forward to the appt because I really wanted to have a conversation with the doctor and told the nurse that. And she said I could but that since I was on the antibiotic, I couldn't have the infusion. I was crushed because I've been having so much joint pain and such a bad flare with the P, I was ready to move things up a notch.

When the doctor came in, he wanted to see one of my boils and I showed him. He said that if I went ahead with the infusion and I had some sort of infection, it could get worse and I could end up in the hospital. I don't want that, but I told him I felt the boil was healed. He seemed to agree and said i could have the infusion. As he's writing things down, I ask, how he thinks the remicade is working. I thought that was a nice little introductory question to what all I wanted to say. Well, jeez. He said, if I don't know how it's going, then maybe I shouldn't have the infusion today. He asked me if the P was better. I said, no. Initially, it was great, but now it is much worse and I have types of psoriasis I never had before. He should know that because we've talked about it on every visit. The pain has been pretty good until this time. I've had a lot of problems for the last 4-5 weeks with the joints. Different joints everyday.

Rheumy says, I should call on Thursday and let him know how I'm doing and then, if needed they can squeeze me in next week. I had to get this clarified from the nurse because I still really don't understand it. If I'm not doing so great now, why would I be any better on Thursday when I've had no treatment? I'm just shaking my head about it.

Needless to say, I didn't get to talk to him because my one question ended the discussion. What should I have asked?

I need to let him know that I have numbness in two fingers. It was pre-remicade but it is getting worse. What I really wanted was for him to get the x-ray reports to my family doctor who seems to want to know if I have a pinched nerve or something. Still shaking head. I wanted to tell him how much the P is hurting and how I can't seem to grip anything. Not due to the PA, I don't think. I'm not sure what it's from, but my hands are very, very clumsy. I feel like all thumbs. I really wanted to tell him all this because I think he needs to know. I wanted to hear what his grand plan was with the remicade. I got nothing.

I really like my doctor, but the last two visits have been less than satisfying.

And I'm really not OK with the flaring. I have P in the scalp, like I've never had before. Under my right arm (never had that before). In the skin folds (never had that before). Palms and feet (never had that before). Where I only had one nail involved before, I have three now. I would call that a flare.

[JesseLou]

I had to change rheumatologists a year ago because my first guy died suddenly. The new guy asked me if I thought the methotrexate I take had done me any good - I too thought this odd, as my previous doc, a friend of his, had kept me on it for 2 years. After thinking about it, I decided it was a very purposeful question: methotrexate is a strong drug with potential side effects, and if it isn't really making you significantly better, it would be better to take something else.

I'm just guessing, but maybe that is the effect your question and explanation had on your doctor. First he was concerned about giving you the infusion when there was any chance at all that you might be harboring staph, which is a sneaky and difficult to get rid of bacteria that can be very dangerous - and by the way, is thought to be one of the things that causes flares of psoriasis and PA. But he - tentatively? -decided to go ahead. Then you indicated you were unsure remicade was helping when you asked his opinion of your progress - I know that's not what you intended, but I'm guessng that's how he took it. And finally you said your psoriasis had progressed to different places and types while on remicade - this is a real negative, as the biologics have been known to actually cause the problem they are meant to treat in some people. Maybe he decided to err on the side of caution - remicade is a powerful drug, and the reason all DMARDs are dosed at intervals is to allow your body to recover from the drug before you take it again - he decided to wait a week and see what happens in that time. Maybe he was on the fence about the infection possibility, and then your other comments made up his mind for him.

The only way to know the answer for sure is to talk to him. If he's walking out too quickly, say "Doctor, I have a couple of important questions." I find that usually gets their attention back. And YOU tell HIM what remicade is doing for you, and what you are disappointed in with this treatment. In order to continue the treatment, a responsible doctor has to know first that he will "do no harm" by giving a drug that is marginally effective or is causing damage or might make some other problem worse.

If you ever find a doctor who is really good AND has social skills, never let him/her go! They are few and far between!

I hope this is helpful.

[arlcollins]

How long from the time you get your infusion till you sart feeling relief? I got my 4th infusion yesterday morning and my knee is still killing me.

[KK]

I had my second Remicade treatment a few days ago, my first was a week before that. I already have major, yes major improvement in my fingers, hands wrists, ancles and kneees. PLUS, my skin has never felt so soft. My Psoriasis on my hands and palms is..like...gone!!!!

Arl,
I really hope you too feel better fast! I sure wish you the best!

[RichJ]

hi kk,
welcome to the pfamily. you will meet some of the wondeful people on here and find alot of great info. welcome and nice to meet you. im so glad you found some thing that helped you so good. im happy for you :D

have a good night all

richard

[LoriASoCal]

I got relief, within a couple of days of my first infusion. That is still the way it is.

[arlcollins]

My knee is finally feelingbetter today. It's still swollen but the excrutiating pain is gone. Now my hands are peeling!! I get a little blister like spot, it peels and then it fades away. Is this PP? They don't hurt ot itch.

[RebeccaSK]

ARL, that's about when my PP started. After my 4th infusion, I think. I'd have to read back in the thread but that sounds about right

I usually got relief in a couple of days from the pain.

I still haven't had another infusion, but will get it a week from next Tuesday. Whatever day that is! LOL

My knee was fine for one day and the pain came back late last night. Today the doc prescribed some narcotics and I'm feeling no pain at all!

I am not ready to give up on remicade. I just think the doctor and I need to communicate better and I think there are still some adjustments to make in the dosing.

[nc56er]

Hi all,
I am new to the board but have been on remicade for 3 years.
My rheumatologist put me on remicade after being referred from my family doctor who was disgusted after 10 years of dermatologists not helping me. During those ten years I was on all kinds fo stuff including chemo, only to have my psoriasis to spread over my entire body. I did not look human.
It took about six remicade treatments to clear me & make me a human again. Also my psoriatic arthritis is so much better now. But I do get sore & have some stiffness when I am about a week away from a treatment.
I started out on remicade getting 4 vials every eight weeks after the initial 3 treatments. About a year & a half ago I was moved to getting 4 vials every month. I am now currently getting 6 vials every month.
Remicade is not a cure all but with the right dose & the treatment intervals, it is a miracle.
So hang in there. If the amount you are getting & the time between treatments are not working for you, demand your doctor to change things.
If your insurance limits you to amounts of medication or time between treatments, let you doctor know. Remicade makers will help out patients to cover what their insurance will not.

Paula in NC

[RichJ]

hi paula,
sorry i can't help much but welcome to the p family. you have met some of the wonderful people on here and will find alot of great info. welcome and nice to meet you. more will come throught and help you

have a good night all

richard
__________________

[arlcollins]

I think I need to decrease the time between infusions. My rheum drained my knee yesterday and it is stiff as a board today. I think I may be walking on it too, much.I need to see my derm asap about my peeling hands. I really haven't seen much clearing in my psoriasis since being on the remicade.

[arlcollins]

I don't know if it's the remicade or osteo A but, my hands are stiff as boards, peeling like crazy, my knuckles are swollen and my knee is killing me. It doesn't seem like the remicade did anything for me, and I wonder if it was the reason my knee felt better since August or whether it was the steriod shot I got the end of July. I am going Tues. to get another shot in my knee and shots in both thumbs, which have osteo A.

[LoriASoCal]

Thanks Paula,

It's nice to know of someone who has used this for several years with success. I'm still new to it, I think June was my first infusion. I take it every six weeks and my dose is about 5mg/kg. It helps alot. I'm in pain right now but I know I only have a week and a half to go before my next infusion so it's more bearable knowing there is relief in sight.

My P is still at bay and hovers around 3 to 5 percent which is well remarkable for me. I'm super happy with the skin and moderately happy with the bones. I hope it lasts but I have to count anything as a HUGE success that can bring me to this point from where I have been.

Hi all,
I am new to the board but have been on remicade for 3 years.
My rheumatologist put me on remicade after being referred from my family doctor who was disgusted after 10 years of dermatologists not helping me. During those ten years I was on all kinds fo stuff including chemo, only to have my psoriasis to spread over my entire body. I did not look human.
It took about six remicade treatments to clear me & make me a human again. Also my psoriatic arthritis is so much better now. But I do get sore & have some stiffness when I am about a week away from a treatment.
I started out on remicade getting 4 vials every eight weeks after the initial 3 treatments. About a year & a half ago I was moved to getting 4 vials every month. I am now currently getting 6 vials every month.
Remicade is not a cure all but with the right dose & the treatment intervals, it is a miracle.
So hang in there. If the amount you are getting & the time between treatments are not working for you, demand your doctor to change things.
If your insurance limits you to amounts of medication or time between treatments, let you doctor know. Remicade makers will help out patients to cover what their insurance will not.

Paula in NC

[LoriASoCal]

arl,

I hope you get relief soon.
I don't know if it's the remicade or osteo A but, my hands are stiff as boards, peeling like crazy, my knuckles are swollen and my knee is killing me. It doesn't seem like the remicade did anything for me, and I wonder if it was the reason my knee felt better since August or whether it was the steriod shot I got the end of July. I am going Tues. to get another shot in my knee and shots in both thumbs, which have osteo A.

[KK]

I'm glad you wrote your story. I'm curious to know about side effects...I'm getting my 3rd on Dec 7th. Since my first infusion I have experienced some, um, "feminine" issues. I am getting a pelvic ultrasound on the 2nd...has anything like this happened to you?
Thanks

[arlcollins]

I haven't experienced any of those kind of problems, they may be unrelated. Is everyone on remicade also on MTX. My rheumy wants me to go on MTX and decrease the time between infusions to 6 weeks. I know you can't drink on MTX(bummer) but does it really help the remicade? I have having P and PA flare right now and she put be back on prednisone until the MTX starts working. Has anyone had a problem with peeling hands while on remicade. The rheumy says it is not a side effect.

[RebeccaSK]

I'm on MTX and remicade and from what I read somewhere on the web, MTX should be prescribed with remicade. I thought I read that at rheumatology.com but I can't seem to find that chart there.

FWIW, I have the peeling hands. Never had it before remicade and nothing is seeming to make it better. The doctor has shortened my infusion time to 6 weeks and also put me on 6 vials.

[arlcollins]

I now think that I have guttate p in addition to plaque P in addition to PA.I am covered from head to foot with pimple like spots. This is all within the past week and the plaque P is awful and spreading.The good news is that the predisone finally kicked in after the dr. doubled the dose to 20 mg.

[Ihurt]

Dear Arlcollins:

My Rheumy (who is very "scientific) with this stuff explained to me that the "half life" of Remicade is about 9 days-so if you multiple the 1 mg dose by the interval days, that's how they decide how much you should have.

The MXT extends the life of Remicade, and also stops the build up of antibodies our immune system could create to the Remicade which could cause a "lupus like" syndrome. He made it very clear to me that he nver wants me off the MXT while Im on the Remicade at all because of this. he's even thinking of increasing the MXT now because of my flares. Im incompletely responding to the Remicade. I had my fifth insusion a few days ago, and so far no relief whatsoever and Im on 5 mgs at 6 week intervals. Last night I spent a great deal of "sleep time" in pain.

Ihurt

[arlcollins]

I don't know how long they keep you on remicade before it is declared unsuccesful, I do know about amevive and enbrel. I just saw the derm who does my light treatment and he told me the same thing about why MTX helps remicade. I think I will be going on MTX next week. What else have you tried? I would think after 5 infusions with MTX you would have seen some improvement. Do you only have PA? My PA was fine until just before the 4th infusion, but know I don't know if it was just the steriod shot I received in Aug. wearing off. We aretaking so much stuff it's sometimes hard to know what is actually working. I hope you start to feel some relief soon. I know how bad it feels.

[Ihurt]

I did hae improvement with the MXT/REmicade, but I went through an extremely stressful situation immediately following my last infusion. That wore off my Remicade very quickly, and so my body was without the Remicade for at least the last three and a half weeks. I just had my infusion again on Monday, no relief yet, but I know it will come as I already feel much better tonight than I did last night, Im just run down.

I was also on Enbrel/MXT. No effect on the Arthritis at all, but it did keep the p at bay-so it worked wellfor the rash.

My arthritis is extremely reactive my doc says, and exacerbated by stress. Im "relearning" how to live a modified life, and to avoid as much stress as I can.

I also think my intervals should be shortened to four weeks, but my doc takes things one at a time, and the intervals were only decreased two months ago. I think once I am no longer dealin with any stress (in the intensity of late) than I will respond much better.

The MXT does work, it just doesn't worlwell alone and they use it in combo with other things to make a better cocktail.

Ihurt

[RebeccaSK]

I had my last remicade infusion on Nov 29 and the upped my dose from 5 to 6. The new psoriasis on my hands and feet responded well and quickly to the treatment but on Dec 2, I had the return of my underarm boil and boy did it hurt -- worse than the other times. I used the bactroban cream on it, as well as a cycle of antibiotics and the boil receded. However, on Dec 11, the pustules on my right hand flared back up. Lots of redness and itching which will soon turn in to peeling skin that hurts. This morning brought the third nail on my right hand to start turning ugly. I'm wondering how dorky I'm going to look with THREE bandaids on one hand? And not to wish anything awful on myself but why just the right hand?

This had NOT been a good day for me.