Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Well, I have posted several times concerning the blistering hives I developed on my hands and feet almost a month ago from out of nowhere.
I have been to the Emergency Room (pred and antibiotics), PCP (Steroid injection), Dermatologist (Claritin and Nsaids) and talked with Rheumy's nurse and my infusion nurse. The doctors all say allergic reaction to something. When I query Remicade, they say they don't know. As long as I am on the steroids, the hives start going away. As soon as the steroid dose stops, they come back in full force. I am convinced it is the Remicade. I have had rashes from allergic reactions to drugs before, but this is one for the books. No itching, but painful large bumps that have blisters on them.
Today, I called the Dermatologist's office and told them I had to get back in there because I cannot stand this any longer. Here it is the holidays and I'm having to wear disposable gloves to do all my food prep. Some days I cannot bear to wear shoes. I am extremely frustrated and in pain.
Have any of you had rashes or hives from Remicade? If so, when did yours occur? How long did it take for the rash/hives to stop? I started Remicade in late July of this year. I have taken one infusion since the start of the hives and they got worse. I am scheduled for my next infusion Jan 19 and the rheumy's nurse said she would make sure I see the rheumy first so we can decide whether or not to take the infusion. I told her I have already made up my mind. He is going to have to build a good case for Remicade for me to go along with having another infusion. Enough is enough. In his defense, he has not seen me with the hives, so he will probably agree with me.
Sorry, just needed to vent.
I have been to the Emergency Room (pred and antibiotics), PCP (Steroid injection), Dermatologist (Claritin and Nsaids) and talked with Rheumy's nurse and my infusion nurse. The doctors all say allergic reaction to something. When I query Remicade, they say they don't know. As long as I am on the steroids, the hives start going away. As soon as the steroid dose stops, they come back in full force. I am convinced it is the Remicade. I have had rashes from allergic reactions to drugs before, but this is one for the books. No itching, but painful large bumps that have blisters on them.
Today, I called the Dermatologist's office and told them I had to get back in there because I cannot stand this any longer. Here it is the holidays and I'm having to wear disposable gloves to do all my food prep. Some days I cannot bear to wear shoes. I am extremely frustrated and in pain.
Have any of you had rashes or hives from Remicade? If so, when did yours occur? How long did it take for the rash/hives to stop? I started Remicade in late July of this year. I have taken one infusion since the start of the hives and they got worse. I am scheduled for my next infusion Jan 19 and the rheumy's nurse said she would make sure I see the rheumy first so we can decide whether or not to take the infusion. I told her I have already made up my mind. He is going to have to build a good case for Remicade for me to go along with having another infusion. Enough is enough. In his defense, he has not seen me with the hives, so he will probably agree with me.
Sorry, just needed to vent.
have you tried benadryl before your infusion?
but, at any rate, it does sound like you need to try a different route. I have never had this kind of reaction with remicade. only with blue cheese lol
wish you luck, that must be just awful
I can't even imagine what you must be going thru. Did the dermatologist order anything to help with itching? Have you tried hydrocortisone cream?
You've made me not want to try it?
I'm not willing to try to premed before another infusion. If you could see what my hands and feet look like, you wouldn't risk it either. I am diabetic and the danger of infection is too great. There is no itching. It is blisters and they hurt, not itch. There are hard bumps under the skin where more are forming all the time. I'm now back on pred for two weeks and Claritin twice a day and then back to the dermo in two weeks for followup.
The Remicade did not help with the pain and stiffness anyway. It did help with the fatigue. The rheumy and I have already discussed maybe trying Enbrel next. Before any other biologic goes in my body, I am going to be free of every single one of these "things" that have erupted on my hands and feet.
Wendy and everybody else...please do not let my experience with Remicade effect your decision whether or not to take. I have a long history of allergic reactions to drugs and foods. That is just the way my body "rolls." I'm surprised that I made it through 6 infusions before it popped up. I met one little lady in the infusion center who was on her 70th infusion and said it had given her life back to her. It's a miracle drug for some.
Merry Christmas Everyone!
You have really had a hard time of it! I have been treating with Remicade since September and January will be my last infusion if I don't get any relief. I have constant flares and now tendonitis in my hamstring. It's frustrating trying to find what works. You must be in so much pain...those blisters sound awful! I hope that you get better soon and you are in my prayers!
When I was on enbrel, I felt almost immediate relief with first shot. And the side effects were that bad. I was tired the evening I took it, slept extremely well and medium tired next morning. I did have reaction to site of injection but just used benadryl cream and it went away.
After 1-1/2 years, I started itching with it but as I mentioned before I may have caused that because the enbrel was working so well I took shots out to 9 days vs. 7 days. I am going to try it again.
If it does not work, I have just not heard good results from Remicade. I will ask Rheumy for Vectra-D test and might try Actemra. I can't wait for Orencia to kick in (Rheumy says it takes awhile with that) since I have not biologics working well for six months. When I am off prednisone, I have severe neck/shoulder pain along with wrist,knees,fingers, feet, ankles,toes,etc. On 10mg now awaiting enbrel.
The pharmacist also recommended taking benadryl one hour before injection to avoid reaction. Now enbrel does sting. Just let it sit out 30 minutes beforehand and ice spot 20 minutes before injection. i give my shot in stomach-does not hurt that bad there.
Good Luck. Merry Christmas to us all.