Have you thought about orencia that a lot of people on this board are happy with or actemra?

My rheumy wants to try remicade next if this second time of enbrel does not work. You're making me leary of remicade-I'm an allergic person too. On 10mg prednisone now, so can not tell if enbrel has started working or not (first shot just yesterday).

Will they keep you on prednisone until you can take another biologic?I cannot take mtx due to high liver numbers. Good Luck and I hope your son feels better and you don't get sick.

Hope it goes away soon and you are feeling better!

What about a combo of 2 or more DMARDs?
I have heard of others on similar protocols.
Have they tried cyclosporine or Leukeran? Two other immunosuppressants.
I wish you much relief! I have dishydrotic eczema in my feet, I cannot even imagine what you are going through.
Did derm say anything about topical steroids? I use Clobetasol, it is supposed to be really potent. I know if I go more than 3 days witout using it, my blistering comes back and the cracking of my soles starts shortly later.

Look into Kineret. It is a daily needle, but very different mechanism than Remicade. It worked well in combo with a DMARD. I'm allergic or unable to take most meds. I'm on Rituxan right now, which doesn't work as well as without a DMARD, but better than nothing.

I'm happy you have an answer, but so sorry to hear it is an allergic reaction. I didn't realize that Remicade and Humira were so similar. I guess you have tried Embrel...??? I have read about Kineret, Orencia, Rituxin and some others. They are close to coming out with a new biologic for RA. I believe it is in the last stage trials. I guess you will need to have a detailed talk with your RD about your options, NCGranny. Hang in there...and I hope you are allowed to take prednisone while you are waiting for a new treatment coctail.

Hugs,
V

Gentle hugs. I am so sorry you are going through all of this.

Hey everyone.

Rheumy will not let me have much prednisone. Type 1.5 diabetes. Very hard to control blood sugars on pred. As far as new RA drugs, I'm not trying anything new for several months...dermo says NOTHING new. After that the rheumy and I will have to work something out. Also depends on price. My medical expenses with my diabetes are sky-high so unless Medicare and my supplemental pay for it, it's out of the question.

I'm so allergic (you should see the list) and after THIS experience, I'm frankly a little afraid of what will happen next time. Need to back off for the few months like the dermo said and then sit down with rheumy and make a decision. Meanwhile, I am on MTX. Allergic to sulfa too so that cuts out a lot of meds.

Rosie, I got a prescription today for Clobetasol. I'll pick that up from pharmacy tomorrow and start that. I've got 2 more weeks on pred, Claritin and the Nsaids.

At least, we think we completely ruled out the drug-induced Lupus...that was an earlier concern before the biopsy came back. I have to go back to dermo in two months for follow-up unless this mess comes back again in which case I am to see him immediately.

Enbrel is the drug we had talked about going to next...but that is now a ways in the future if we go to it.

Angela, sorry you are so allergy-prone, too. It's a bummer.

Thanks, "y'all" for the kind support. Love you much. //Frances

Granny we hope you find the right combo of meds that work for you. Keep us posted what the rheummy says.

I was going to suggest asking about Enbrel, but it looks like your doctor already brought that one up ;) I loved it, and actually plan to ask if I can go back on it since I took such a long break from it. (I became immune to it) I think Enbrel is still doing their assistance card, you can get the injections free for six months, then pay only $10 a month after that.

Hope things don't get to bad for you while you in limbo. Meanwhile, answers are always nice to have. So glad you finally found out what was behind the rash.

-Tanya

ncgranny62: THank good ness for this site. Because I have been dealing with a painful bumpy rash on my elbows since Sept. Hard lumps, granular like, and at times it gets red and more painful than others. My biopsy came back as a plugged hair follicle but the dermatologist thinks it is Palisaded neutrophilic granulomutous dermatitis (PNGD). I went to diff dermatologist on 12/22 because I am taking an anti depressant (just started those a month or 2 ago) Lamictal that can cause a deadly rash and my DERM is 6 weeks to get appt. This term gave me the clobetasol which does sort of "beat back" the rash but soon as I stop it comes back. Also, if I beat it back in one spot, it comes back someplace else. NOW, I have this painful (because I have to sit on it) purplish wide spread rash on the back of my thighs. AM trying now to get appt. I SO SO hope it is not the Remicade...because I need that stuff to get me moving. I am TERRIFIED of going off it. It doesn't help with pain but it helped immensely with the low energy "flue like" feeling I had.
Nothing else, Methotrexate, Enbrel, NSAIDs worked. I am also taking Arava ...maybe it is that? ANYTHING but the REmicade! I am hyper about the rash because of the lamictal thing. I "personally" think it is just the RA causing the rash which is what the PNGD says. I think my body is unhappy and is finding ways to "act out" and if it can't cause sinus infections (had tonsils removed which stopped this just before the RA flare came) and now it can't swell my joints since the Remicade, so it is coming out with painful lumpy rashes.
BTW, I am taking Cymbalta now and that helped ALOT with the stiffness. I was able to walk down the steps normally after a few weeks on it!

THank you for posting !

I'm really sorry this is an allergic reaction. I also had one to remicade - I now take Orencia and haven't had any kind of hint at an allergic reaction at all - I was really scared after the reaction to remicade (hives after the third infusion), but so far so good (been on Orencia since June or July) reaction-wise

Tort

There is also the Anti-biotic Protocol using low dose Minocycline or doxy, which seems to work for a lot of people. On the roadback forum there are thousands of posts going back years and it's still an active board you can see real people discussing this treatment and their success. I am just over a month into this treatment and really seeing improvement, it's worth looking into.. there are people on there who have been taking it for years for all kinds of auto-immune diseases. Just thought I'd throw it out there... I hope you can find a treatment plan that works for you quickly.

I was dx 2 years ago. I felt Remicade was my miracle drug and it was free on my Medicare plan because it was an infusion. After 13 months I developed a raging rash which lasted 5 months. After discontinuing many other drugs they determined it was Remicade. I'm now on Mtx plus Planequil. (sp) which is used for Malaria. Have also been on various levels of Prednisone since dx.
Rheumy suggested we next try Humira or Embrel, but my Medicare co pay for these will run $1500 - $1800 per month because they are injections not infusion which puts them out of range. I met a gal the other day who suggested an over the counter product from Canada called Immunocal . It is an antioxidant and builds your immune system. Has anyone heard of or used it?
Hope you find a good replacement for Remicade.

Jetpuffed, my situation was definitely diagnosed as allergic reaction (dermatologist said he was sure it was the Remicade).
The skin biopsy results say, "The microscopic differential diagnosis includes infection, foreign body reaction and granulomatous drug reaction." Googling Remicade and drilling down enough, you will find other cases of it causing this same thing. It is not common, though.

However, it may not be the Remicade causing yours and I hope not. The Remicade did help my fatigue levels immensely but did not afford much other relief from swelling and pain. I am extremely allergic to many different drugs and foods.

@ncgranny: clobetasol steroid ointment/cream may very well affect your blood sugar. I'm sure you monitor, so you'll know. My doctors (endocrinologist, primary, rheumatologist) had difficulty accepting that it could be absorbed as readily as it is, causing systemic effects. Just be careful, to apply only where needed, as needed. Knocking out sugars and carbs brought my BS back in line. Also, clobetasol probably will not not "heal" your rash, but it will probably "treat" it effectively. One more thing. Sometimes a medication will cause an adverse reaction, but even after it is believed to have been cleared from your body, the reaction continues. I hope that won't be your case. You should know in a couple of months. Good luck.