Update: Raptiva - Lumps/Infections/Flaring - skin is burning

[SamanthaW]

I have been on Raptiva for about 3 months, developed ear infection, UTI and lumps in my upper thigh (not in injection sight). Doctor took me off Raptiva while on 3 courses of antibiotics and had a flu shot. I just finished the Cipro last weekend. I saw a surgeon yesterday for the lumps, he is not concerned about them, and said they are lipomas (benign lumps). Who knows if I got them from being on the Raptiva. That has eased my mind tremendously. I hadn't flared until about 3-4 days ago after being off the Raptiva for about a month. I am in terrible pain from flaring! I saw derm yesterday, before the surgeon. He gave a different ointment from the previous ones I had been on. I feel like I am on fire and I have the chills. I took an injection on Monday - first one in 4-5 weeks. I have used the new ointment and I still feel hot and in unbearable pain in my arms and chest, neck. My doctor has left the practice - his last day was yesterday. I have another appointment with another doctor in the office next week. I'm getting concerned, I am getting no relief from these ointments. The office had given me his cell phone number on Monday, and he told me to call him on it if I needed to. I am reluctant to do so and wait a day or two and hopefully it will calm down. If you touch my skin it feels hot. I could not get warm last night. I had a comforter and 3 blankets and was still cold. If you have any suggestions, please let me know. I am desperate! Thank you.
Samantha

[psoriaspouse]

Samantha,

So sorry you are feeling so cruddy - that totally sucks, especially after the recent rollercoaster ride you have been on.

Did you take your temperature? Is it elevated? It is possible that you have another sort of infection starting up. Is the pain in your arms, chest, and neck from the areas you are flaring? Do you have patches there? If you don't, I would consider that abnormal.

Please, the doctor wouldn't have told you to call him if he didn't mean it (well, maybe he did but who cares). That is his job. Being a doctor can mean working 24-7, and that is what they know going into it. That's part of the reason they make the big bucks. Nobody should feel intimidated by contacting their physician, nor should you think you are calling them "for nothing". Much can change in 24-48 hours, especially when you are on an immunomodulating drug; they may want to know what the heck is going on with you so they can help. Ask for what you need. If you really are sick, you need the help.

Do you have a bathtub? A warm (not hot) bath with salts (rinse them off afterward) and oatmeal wrapped in cheesecloth could soothe your skin and warm your core so you can sleep without feeling chilled. Pure aloe vera gel may help put out the flames on your skin. Take good care, hope you are back to your best soon!

-Diana

[Mybadgenes]

Samantha,

It sounds like you are going into erythrodermic psoriasis. Do not wait to see if it will calm down. Believe me, it won't. You must get some help right away. Use that cell phone number and call that doctor. Having the chills is indicative of this. Some medication is needed immediately to get under control. I have been where you are and you need help.

Let us hear,
Juanita

[grannyfranny]

Samantha,
Do call that doctor. This does not sound good.

[SandraJean]

Samanatha,

I agree with everyone. I think you should definitely call your Doctor right away. Please let us know how you are doing. Get some help now.

Sandy

[MikeK]

Hi Samantha,

I'm sorry that I wasn't home earlier this evening when Karen called and asked me to come into the chat room. Raptiva is notorious for causing severe flares when people stop taking it. I agree with Juanita. It sounds like you may be going into an erythrodermic psoriasis flare (click here). I don't want to scare you, but erythrodermic psoriasis is one of the more serious forms of psoriasis. As Juanita said, it's important that you get treatment sooner rather then later. Please call the derm on his cell phone. If he doesn't answer, then call his former office and leave an urgent message. In either case, please be sure to mention that you think that you may be erythrodermic. If they don't get back to you and your condition does not seem to be improving then please seriously considering going to the emergency room at the closest teaching hospital that has a dermatology dermpartment.

I hope this helps.

Feel better. Keep us posted.

Mike

[davidk46219]

Hello SamanthaW
My name is David King and I am the support group leader in Indianapolis Please email me at davidk@iquest.net I have been in the same condition as you many times
Dave

[PJ Leary]

Hi SamanthaW,

Dave and I can help. Please either email Dave at his address above, or me at:

altha@ipass.net

The sooner we all talk the sooner we can help you get what you need. As the others said, you need to get to a good Doc asap.

[SamanthaW]

Happy Thanksgiving!

Doctor called before 8am this morning. He is putting me on methotrexate and wants to keep in touch over the next few days. I mentioned the erythrodermic and he said this is why he wants me on methotrexate. He's calling around this morning - trying to find a pharmacy that is open. Anyone know of a chain who may be open today? He said to call right away if I have fever and/or psoriasis filled with yellow, which I do not have. Thank you for telling me to call him, as I did not know anything about how serious this could be! You are all a blessing to me and I wish you all a very Happy Thanskgiving! I hope I can give back to the group!
P.S. Doctor called while I was typing this - CVS pharmacy is open today.
What are the side affects to the methotrexate?

Samantha

[Mybadgenes]

Hooray for you, Samantha!!

I was also put on MTX when I was in this condition. It was either MTX or Cyclosporine. I chose MTX as I was familiar with it and had used it before and am still on it.

My derm also gave me her cell phone number when I was in trouble...and I mean TROUBLE! I had to use it a couple of times. I applaud your derm's quick response and caring. I also was told to look for it going into pus filled places ppp. They did appear but I was lucky to not have been hospitalized.

Stay in touch with your derm, so glad for you!!!!

Juanita

[grannyfranny]

Samantha,
I am glad you called, that's what our doctors are for,,,,to help us.
Hope you get better fast!

[SandraJean]

Samanatha,

So glad you called and that your Doctor will be following you closely. Hope things get better fast.

Sandy

[MikeK]

He sounds like my kind of doctor!

Please get in touch with both Dave King and PJ Leary as soon as possible. They gave you their e-mail addresses. They've been in your situation and will help you get through this as best they can. (Dave just came home from the hospital. He was so severely e-dermic that he was in the ICU.)

What are the side affects to the methotrexate?

Methotrexate (MTX) is actually a form of chemotherapy that in reduced doses is used to treat psoriasis and PA. MTX has a number of potential side effects -- some of which can be quite serious. The most common complaints seem to be nausea and fatigue. Most doctors prescribe folic acid on the days that you do not take MTX. It is important that you do NOT drink alcohol while you are MTX. MTX can cause birth defects. You're also going to need to go for regular blood tests.

Here's a link to some additional information about MTX: http://www.pdrhealth.com/drug_info/r.../met1257.shtml.

I hope this helps.

Keep us posted. Feel better and happy Thanksgiving.

Mike

[mdgirl]

Hello,

You have got some great advice. I am sending you a personal e-mail. I have been here too.

Take care,

Diane

[SamanthaW]

My doctor has called every few days to see how I am doing after my nightmare flare last week. He called on Thanksgiving and found a pharmacy that was open (CVS). He's going to check back on Monday with me once he gets my blood tests back from last week. He says I need to go for more blood work next week (I am on methotrexate and Raptiva). He just left a practice last week and is planning to open his own practice by year end. It has given me a new prospective on how caring doctors can be!

[ev]

IN RESPONSE TO SAMANTHA W. MY SISTER IS ON RAPTIVA AND HAS FOUND LUMPS ON HER LEGS, BELOW THE KNEE. THEY ARE RED AND ARE THE SIZE OF DIMES TO QUARTERS. THEY ARE SOMETIMES SORE. SHE STARTED OUT WITH ONE OR TWO AND THEY ARE MULTIPLYING. I LOOKED UP HER SYMPTONS ON-LINE BECAUSE SHE WAS GETTING NOWHERE WITH HER DOCTORS, AND I FOUND A CONDITION CALLED ERYTHEMA NODOSUM. IT CAN BE CAUSED BY A FEW DIFFERENT SCENARIOS, BUT ONE OF THEM IS TAKING DIFFERENT TYPES OF MEDICATIONS. WE ARE ASSUMING THAT IT MAY BE THE RAPTIVA SINCE SHE ISN'T TAKING ANY OTHER MEDS.
THE TREATMENT FOR ERYTHEMA NODOSUM IS ANTI INFLAMMATOTY MEDS SUCH AS IBUPROFEN. IT OFFERS TEMPORARY RELIEF FROM THE PAIN AND INFLAMMATION CAUSED BY THE LUMPS. THE CONDITION IS BENIGN AND WILL CONTINUE FOR WEEKS OR MONTHS, BEFORE GOING AWAY. AS A LUMP GETS BETTER AND FLATTENS OUT, IT LEAVES A BRUISE IN THAT SPOT. IT CAN ALSO BE TREATED WITH CORTISONE TAKEN INTERNALLY.
GOOD LUCK. I HOPE YOU HAVE SOME SORT OF DIAGNOSIS SOON. MY SISTER HAS STOPPED THE RAPTIVA. LUCKILY, SHE HASN'T GOTTEN THE TERRIBLE FLARE-UPS I'VE READ ABOUT ONCE YOU STOP.

[Kimbercat]

I just wanted to point out that the original posts here are from Nov 2005.

[RichJ]

IN RESPONSE TO SAMANTHA W. MY SISTER IS ON RAPTIVA AND HAS FOUND LUMPS ON HER LEGS, BELOW THE KNEE. THEY ARE RED AND ARE THE SIZE OF DIMES TO QUARTERS. THEY ARE SOMETIMES SORE. SHE STARTED OUT WITH ONE OR TWO AND THEY ARE MULTIPLYING. I LOOKED UP HER SYMPTONS ON-LINE BECAUSE SHE WAS GETTING NOWHERE WITH HER DOCTORS, AND I FOUND A CONDITION CALLED ERYTHEMA NODOSUM. IT CAN BE CAUSED BY A FEW DIFFERENT SCENARIOS, BUT ONE OF THEM IS TAKING DIFFERENT TYPES OF MEDICATIONS. WE ARE ASSUMING THAT IT MAY BE THE RAPTIVA SINCE SHE ISN'T TAKING ANY OTHER MEDS.
THE TREATMENT FOR ERYTHEMA NODOSUM IS ANTI INFLAMMATOTY MEDS SUCH AS IBUPROFEN. IT OFFERS TEMPORARY RELIEF FROM THE PAIN AND INFLAMMATION CAUSED BY THE LUMPS. THE CONDITION IS BENIGN AND WILL CONTINUE FOR WEEKS OR MONTHS, BEFORE GOING AWAY. AS A LUMP GETS BETTER AND FLATTENS OUT, IT LEAVES A BRUISE IN THAT SPOT. IT CAN ALSO BE TREATED WITH CORTISONE TAKEN INTERNALLY.
GOOD LUCK. I HOPE YOU HAVE SOME SORT OF DIAGNOSIS SOON. MY SISTER HAS STOPPED THE RAPTIVA. LUCKILY, SHE HASN'T GOTTEN THE TERRIBLE FLARE-UPS I'VE READ ABOUT ONCE YOU STOP.

hi ev,
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.

have a good night all

richard

[Engadine]

THE TREATMENT FOR ERYTHEMA NODOSUM IS ANTI INFLAMMATOTY MEDS SUCH AS IBUPROFEN.

A red flag here! I just had an ibuprophen induced re-flare recently. Keep away from it, please - this anti-inflammatory med has lots of substitutives out there - and try any other one. We'd better not display red carpets to re-bounds!

Good luck!

Engadine.

[Engadine]

I just wanted to point out that the original posts here are from Nov 2005.

Oouuch!!