Why is this happening...I was doing so well?

[mamaooch]

Hello all,
Here's the scoop. My first Remicade infusion was on July 17th and my second was August 1st. After the first infusion I was doing great, but last Thursday and Friday I spent a lot of time outside at the pool with some friends. I am very tan, but I use sunscreen too. On Saturday I noticed a small rash on the bottom of my legs, then by Tuesday it was on my arms. When I went to have my infusion on Tuesday the nurses had the Doc come and look before I got the infusion. The rhemy said it looked like a sun rash. The infusion went fine. When I woke up Wednesday morning the rash (little red bumps) was on my chest and the top of my back. I went to the Derm.
OMG, he did a biopsy(I got 2 stitches), prescribed Plaquenil (which I haven't taken because I am scared to) and a pound of kenalog to spread all over my body. My derm seems to think this is a photosensitivity reaction to the Remicade OR a drug induced Lupus type reaction. The derm ordered lots of blood work CBC, ANA test, liver enzymes, etc. He also had me order this special sunscreen that blocks UVB and UVA rays. My family and I are leaving for the Outer Banks on Saturday (trip has been planned since January). I feel so bummed and I really don't know what to do. I am on MTX, folic acid, Remicade of course and now the derm wants to add Plaquenil. The derm said he wanted to be agressive in the treatment so I could enjoy the beach since I have been through so much. I called my Rhemy to get a go on the new med, but he said I could take it but it probably wouldn't help much and he said it would take time to resolve the reaction. I am calling the derm in the morning to see if he has any labs back yet and go from there.

Thanks for allowing me to vent.

Have a great night all.

[emilou]

Hello all,
Here's the scoop. My first Remicade infusion was on July 17th and my second was August 1st. After the first infusion I was doing great, but last Thursday and Friday I spent a lot of time outside at the pool with some friends. I am very tan, but I use sunscreen too. On Saturday I noticed a small rash on the bottom of my legs, then by Tuesday it was on my arms. When I went to have my infusion on Tuesday the nurses had the Doc come and look before I got the infusion. The rhemy said it looked like a sun rash. The infusion went fine. When I woke up Wednesday morning the rash (little red bumps) was on my chest and the top of my back. I went to the Derm.
OMG, he did a biopsy(I got 2 stitches), prescribed Plaquenil (which I haven't taken because I am scared to) and a pound of kenalog to spread all over my body. My derm seems to think this is a photosensitivity reaction to the Remicade OR a drug induced Lupus type reaction. The derm ordered lots of blood work CBC, ANA test, liver enzymes, etc. He also had me order this special sunscreen that blocks UVB and UVA rays. My family and I are leaving for the Outer Banks on Saturday (trip has been planned since January). I feel so bummed and I really don't know what to do. I am on MTX, folic acid, Remicade of course and now the derm wants to add Plaquenil. The derm said he wanted to be agressive in the treatment so I could enjoy the beach since I have been through so much. I called my Rhemy to get a go on the new med, but he said I could take it but it probably wouldn't help much and he said it would take time to resolve the reaction. I am calling the derm in the morning to see if he has any labs back yet and go from there.

Thanks for allowing me to vent.

Have a great night all.

My Heart Goes Out To You!
I have P on my face
Good Days and Bad
One of my friends thought I had been hit but didn't want to ask
That was yesterday she told me that
She now knows it is the P
Almost a week she had wanted to ask me about my face but was afraid
When I had my biopsy and had stitches ppl thought the worse!
It was kind of funny...but at the same time ...so sad.
Somedays...sometimes it isn't too bad other days want to hide but...I don't
It isn't ME ...only a part of me
I work in the food industry...customer service and now I volunteer what's up...or should I say on my face
Humour has helped.
Immensely!
Enjoy your holiday, hold you head up high, you are BEAUTIFUL!

[jennmkirby]

Awww, Mama-I am so sorry to hear that now you're going through this too! I will be praying for this to resolve quickly. :(
Keep the faith and have a great time with your family at OBX!

jenn (south of Charlotte)

[Mybadgenes]

Cindy....so sorry! :(

Just a thought.....even though you are going to doctors for this and they should know.....I take a couple of meds that say ****Avoid Sunlight****.
One of them is MTX. So, I do....I do spend about 20 minutes at a time in our vegetable garden gathering but no extended time.

Best of luck with it...

Juanita

[SandraJean]

Cindy,

I'm so sorry about all you've been going thru! Take care and know we are all thinking about you!

Sandy

[baldwin123]

Did all your bloodwork come back ok?... this really stinks, and you have been through so much, I feel so bad for you... I hope the rash starts to subside and that you can just go and enjoy this vacation and not worry about anything! Has the remicade been helping the joint pain at all yet? Sounds like your derm is very caring, and that he is checking everything out...tell us how that sunscreen works!

Cindy, hang in there, and know we are all thinking of you...please vent any time, and we will send you all the support vibes we can muster!
ENJOY THE OUTER BANKS! :)
Love, Jen

[mamaooch]

Cindy....so sorry! :(

Just a thought.....even though you are going to doctors for this and they should know.....I take a couple of meds that say ****Avoid Sunlight****.
One of them is MTX. So, I do....I do spend about 20 minutes at a time in our vegetable garden gathering but no extended time.

Best of luck with it...

Juanita
Thanks for all your support and well wishes. As far as sunlight goes, I have been on MTX since March, but have been out in the sun all summer (using sunscreen of course) so I am very tan. I had this reaction last week so the Doc is sure it is not the MTX since I have been on it so long. The Remicade is probably the reason. I just called the Docs office to see if they have the results of all the blood work. Waiting for a call back! Waiting.......

Thanks for all the kind words. They mean more to me than you all will ever know.

The real bummer....this is the first time in months that I didn't get up and go to the Y for cycling class...I just could not make it out of the bed.

Have a great day everybody!
Cindy

[mamaooch]

Did all your bloodwork come back ok?... this really stinks, and you have been through so much, I feel so bad for you... I hope the rash starts to subside and that you can just go and enjoy this vacation and not worry about anything! Has the remicade been helping the joint pain at all yet? Sounds like your derm is very caring, and that he is checking everything out...tell us how that sunscreen works!

Cindy, hang in there, and know we are all thinking of you...please vent any time, and we will send you all the support vibes we can muster!
ENJOY THE OUTER BANKS! :)
Love, Jen

Hey Jen,
Yes, the remicade has started to help the joint pain, my ribs are not constantly hurting anymore. The vice around my chest has finally loosened so to speak. That's why I am so concerned, if the Remicade is the reason for this massive break out, who knows what will happen.

I am leaving tomorrow for our yearly trip to the OBX. We rented a nice house in Avon (near Hatteras) as we do every year. All my boys are home and I am looking forward to a nice peaceful week. We have internet access so I will try and keep you posted. I will be the tester for this new sunscreen, it is in the smallest bottle you ever seen, so my DH ordered 4 bottles. It is called Solbar AVO with Parsol 1789 (avobenzone) and it blocks out UVA and UVB, and it cost $11 for 4 ounces. I will let you know how it goes.

Have a great day!
Cindy

[abbyroad]

Cindy,
so sorry that this has all been happening with you! :(
I am sending good thoughts as well and hope everything gets better.. :o
Have a nice, relaxing weekend.
:)

Abby

[mamaooch]

The Derm finally called and said the blood work all came back normal, so it seems that it is a photosensitivity and not a Lupus induced reaction, thank goodness. The biopsy has yet to come back, but I expected that since it has only been two days. So now I can go on the trip with a little peace of mind.
I have packed all my meds, pound of cream, and all the necessary stuff to clean the biopsy site and heavy duty sunscreen and BIG FLOPPY HAT. Too bad that leaves little space for clothes, LOL. I just have to laugh sometimes.
The smell of the ocean air, change of scenery and relaxing with family will make the world of difference.

I forgot to mention, I got stuck to the sheets last night due to all the cream on my body. I rubbed it in real good, but I guess I got hot and sweated and woke up tangled in the sheets, it was too funny. I guess when you take 2 benadryl to stop the itching, you sleep like a baby.

Thanks for all your kind words and support.
Have a wonderful weekend. It is going to cool off (84 instead of 94) for the weekend and I am so glad.

Cindy

[JillyBean]

I've been wondering how you are doing and then I saw this thread. I am so very sorry and brokenhearted that you have to go through all of this. What an ordeal and I do know what it's like to have a mysterious all-over rash make you worry something is very wrong and you may have to stop the only treatment that might help! Urgh.
And right before you big vacation. Such timing. I am so relieved it is not a Lupus-type reaction.

I hope your rash starts fading away and that you are able to enjoy your annual vacation. You will be in my thoughts and prayers!

Jill

[nesielheum]

Hey Mamamooch,
I love the outer banks, and I hope that you have a great week. WOW! I just checked the extended forecast and the highs for the next 10 days are listed between 87 - 84. :) Absolutely gorgeous! I hope the new sunscreen works for you, but if all else fails there is always the trusty umbrella.

[mamaooch]

I've been wondering how you are doing and then I saw this thread. I am so very sorry and brokenhearted that you have to go through all of this. What an ordeal and I do know what it's like to have a mysterious all-over rash make you worry something is very wrong and you may have to stop the only treatment that might help! Urgh.
And right before you big vacation. Such timing. I am so relieved it is not a Lupus-type reaction.

I hope your rash starts fading away and that you are able to enjoy your annual vacation. You will be in my thoughts and prayers!

Jill
Jill,
Thanks for you kind words. Like I said, it could be worse. The itching is the worse. That pound of Kenalog cream has the consistency of Crisco. I rub, rub and rub and it takes forever to get that stuff on. My DH was laughing this morning when I woke up all tangled and stuck to the sheets and I laughed so hard I hurt.

Life is very funny, when you think you have the answer, another question enters your life. Day by day I appreciate the little things, the hugs from my teenage boys (not in front of anyone), dinner together, friends and support from people here that have become friends even though we have never met. You are wonderful!

Have a wonderful day and weekend!
Cindy

[mamaooch]

Hey Mamamooch,
I love the outer banks, and I hope that you have a great week. WOW! I just checked the extended forecast and the highs for the next 10 days are listed between 87 - 84. :) Absolutely gorgeous! I hope the new sunscreen works for you, but if all else fails there is always the trusty umbrella.

Tim,
I need those cooler temps. The big floppy hat and umbrella with a good book will do just as well. I am fishing on a boat while I am down there so I will be using the sunscreen and covering up some. Maybe I can catch some Mahi like last year. I love to fish especially if they are biting.

Thanks again,
Cindy

[grannyfranny]

Cindy,,,,,,I'm glad you found out what this is. As I started reading, I was worried that it was the Remicade.

I am SUPER sensitive to the sun and break out in a rash,,,not sun burn. I have to be very, very careful. I have a shirt and hat that prevents the sun rays for entering. If this continues to be a problem, you might want to try this.
www.Solumbra.com My doctor called it Polymorphic light eruption.
Here is a site that describes the problems associated with sun sensitivity.

http://www.dermnetnz.org/reactions/photosensitivity.html#pmle

Have fun at beach,,, :) bet the boys will enjoy it.

[mamaooch]

Cindy,,,,,,I'm glad you found out what this is. As I started reading, I was worried that it was the Remicade.

I am SUPER sensitive to the sun and break out in a rash,,,not sun burn. I have to be very, very careful. I have a shirt and hat that prevents the sun rays for entering. If this continues to be a problem, you might want to try this.
www.Solumbra.com My doctor called it Polymorphic light eruption.
Here is a site that describes the problems associated with sun sensitivity.

http://www.dermnetnz.org/reactions/photosensitivity.html#pmle

Have fun at beach,,, :) bet the boys will enjoy it.

Thanks Granny,
I have NEVER been sensitive to the sun my whole life, so this is so surprising to me. But I will protect myself while I am there. Thanks for the info and the kind words. Vacation is what I need right now, even sitting under an umbrella will be cool. But I have to fish, so I will take a cover-up and my extremely big floppy hat with me.

Here is a pic of a shark I caught last year off the Avon Pier. I let the little guy go, it was hard getting him off the hook....ouch!


Have a great evening!
Cindy

[jennmkirby]

I forgot to say... be EXTREMELY careful of rip currents. I vacationed in Avon back in, ummm, '97, and my at-the-time boyfriend and I both almost drowned. Luckily he was a boy scout and knew what to do. SCARY! If you get caught in one, just swim parallel to the shore until you're out of it. Hope you have a great time! (Glad to hear it wasn't lupus, BTW.)

[mamaooch]

I forgot to say... be EXTREMELY careful of rip currents. I vacationed in Avon back in, ummm, '97, and my at-the-time boyfriend and I both almost drowned. Luckily he was a boy scout and knew what to do. SCARY! If you get caught in one, just swim parallel to the shore until you're out of it. Hope you have a great time! (Glad to hear it wasn't lupus, BTW.)

Thanks for the info. The rip currents are bad there. We have been going down yearly for almost 20 years, so we always get a house on the sound. We kayak, swim and fish in the sound. We only go to the ocean side to collect shells. Two years ago I was running on that beach! We are also going out on a friend's boat to fish.

Have a great evening!
Time for me to apply the Crisco cream again!

cindy

[mamaooch]

Hello Everyone!
It the OBX in Avon. Spent the day on the sound and boat. I think the salt water is helping the rash. That special sunscreen works great! My middle son Jaron caught a 17 inch flounder! He was all excited, it is the biggest fish he has ever caught. I hope everyone is okay.

Have a great evening!
Cindy

[Stillworking]

Hope you continue to have a great time. Plaq is not the demon drug that everyone thinks it is. I was on it for almost a year with Remicade and prednisone. Now up and running on just Remicade and Flexeril for the cervical spon. I had no problems at all with the Plaq. Hang in there. Better times are ahead.

[misales]

Are you kidding me? There are a bunch of doctors on these boards and ones that I hired that would never say that happened to me while on enbrel.....

[RichJ]

hi cindy,
i hope your having a great time on vac. :D :D :D have alot of fun

have a good day all

richard

[mamaooch]

Are you kidding me? There are a bunch of doctors on these boards and ones that I hired that would never say that happened to me while on enbrel.....


What are you saying? Didn't understand your question, Are you kidding me?


having a great time at OBX
Cindy

[mamaooch]

hi cindy,
i hope your having a great time on vac. :D :D :D have alot of fun

have a good day all

richard

I am having a great time! The new sunscreen is working great! My rash is almost gone. I hope you are doing great!

Have a great evening!
Cindy

[mamaooch]

Hope you continue to have a great time. Plaq is not the demon drug that everyone thinks it is. I was on it for almost a year with Remicade and prednisone. Now up and running on just Remicade and Flexeril for the cervical spon. I had no problems at all with the Plaq. Hang in there. Better times are ahead.


Did you get sick while taking it? Just wondering.

Cindy

[PJ Leary]

Hi Cindy,

Sorry not to post sooner. I have noticed this summer that the remicade has made me much more sensitive to the sun than usual. Like you, I tan very dark. Yet, I have spent hardly any time in the sun this summer and am as brown as I would be if I had been out every day. I've even beeen sitting in the shade with the white ladies.

The only explanation that I have is the remicade. While I have not had a sun rash, it sure sounds like that is what you've had. I am not surprized the salt water is helping. Try to keep your sun exposure to a minimum until the rash is completely gone.

Carry on with the good times!!

Regards,

[mamaooch]

Hi Cindy,

Sorry not to post sooner. I have noticed this summer that the remicade has made me much more sensitive to the sun than usual. Like you, I tan very dark. Yet, I have spent hardly any time in the sun this summer and am as brown as I would be if I had been out every day. I've even beeen sitting in the shade with the white ladies.

The only explanation that I have is the remicade. While I have not had a sun rash, it sure sounds like that is what you've had. I am not surprized the salt water is helping. Try to keep your sun exposure to a minimum until the rash is completely gone.

Carry on with the good times!!

Regards,


Thanks PJ!
I am using the sunscreen that the Doc recommended and staying under the umbrella as much as possible. The rash that covered my arms, chest, back and legs is gone except a little rash left near my ankles and lower part of my shins. It has been a great week so far, I am not even as tired as I was at home, I guess when you remove all the stress at home one can relax and enjoy the little things life has to offer (ie, my boys fishing, the sunrise and sunset and the fresh air that is here).

Congratuations on being Volunteer of the Year, you deserve it!
Thanks for the info. The remicade is helping my joint pain, so if I have to stay out of the sun or layer myself with this expense sunscreen then it is worth it.

Have a wonderful evening1
Cindy

[cajungirl]

Hi Cindy:

I'm glad to read that Remicade is helping your joint pain! I just wanted to add that on my third dose of Remicade I broke out in a rash that lasted for about 2 1/2 weeks. I was doing nothing differently with my diet etc., but it drove me nuts. Then just disappeared. The only thing we could attribute it to was the Remicade. When I went for the next treatment they slowed down the Remicade and I haven't had the rash again. The Dr. told me that everyone is different and their bodies react differencly and maybe if we slowed it down it would help. I had no headache (which i normally get with every treatment) and no rash since we've done this.

[Stillworking]

never felt sick at all. absolutely no side effects for me at all. Now my Remicade has been increased to 7mg/kg every 6 weeks instead of every 8 as I was flaring for at least 2 weeks before the infusion. All blood work is AOk. Glad to try to answer questions. I have an aggressive form, so my dosage is most likely higher than some others. No photosensitivety either. I love to garden. Best of luck. Keep relaxing and enjoying

[mamaooch]

I went to the derm today to get my stitches out and I have my path report. The derm stated that Lupus erythematosus would have to be considered in the histologic differential diagnosis. Diagnosis INTERFACE DERMATITIS.

My ANA blood test was NEG, thank goodness

Here is the path description: Microscopic Evaluation
Sections show focal parakeratosis overlying several areas of the epidermis with vacuolar alteration of the dermal-epidermal junction and dyskeratotic keratinocytes. There is an associated lymphocytic inflammation which extends to the superficial and mid vessels. Melanophages are present in the superficial infiltrate.

Comment from Path:
Since eosinophils are not conspicuous in the sections, that would give less weight for this lesion being a drug eruption. I do not favor a phototoxic reaction based on the multifocal nature of the interface reaction.

Here's what I got of the web:
Interface Dermatitis - A microscopic term referring to a type of dermatitis that shows lymphocytes attacking the basal layer of epidermis causing vacuolar change in the basal cells or necrosis of basal keratinocytes. This type of inflammation is seen in erythema nodosum (acute interface dermatitis) and in lupus (chronic interface dermatitis).

From what I read online and what the derm said is that I have lupus lesions of the skin. Subacute cutaneous lupus erythematosus refers to skin lesions that appear on parts of the body exposed to sun. The derm wants to see me in 2 months. If the rash ( lesions) get worse, he wants me to take the Plaquenil that he prescribed last time that I did not take. The lesions have improved with Kenalog cream and using a sunscreen that blocks UVA and UVB when I have been out in the sun. The derm is writing a letter to my Rhemy, he says that I should be able to continue the Remicade and see if the rash continues into the cooler months when I am not out in the sun, and then we could pinpoint the reason for the eruption.

Sorry this is so long, but if anyone here understands the path report above (microscopic) please post here. Mike the linkmaster.....Help!

Thanks in advance! You are all wonderful.
Cindy

[mamaooch]

Also, I forgot to mention my pppp on my feet are flaring and I have to use a topical for a while. And my next Remicade infusion is not until the end of August. Too bad I couldn't stay at the beach, the water really helped.

Have a good night all!
Cindy

[MikeK]

OH, Cindy! I'm so sorry! I didn't see this until just now. (As you know, I was away (and off-line) for about 10 days. I still have a lot of catching up to do.)

I'm an accountant not a doctor, so I've been googling. Please ask your doctor(s) any specific questions you have -- either about the report or about what I've come up with!

The derm stated that Lupus erythematosus would have to be considered in the histologic differential diagnosis. Diagnosis INTERFACE DERMATITIS.Here's one definition of Interface Dermatitis:Interface Dermatitis - A microscopic term referring to a type of dermatitis that shows lymphocytes attacking the basal layer of epidermis causing vacuolar change in the basal cells or necrosis of basal keratinocytes. This type of inflammation is seen in erythema nodosum (acute interface dermatitis) and in lupus (chronic interface dermatitis)Source: http://missinglink.ucsf.edu/lm/DermatologyGlossary/interface_dermatitis.html.

Dermatitis is an inflammation of the skin.Source: http://www.clevelandclinic.org/health/health-info/docs/0000/0066.asp?index=4089.

Lymphocytes are white blood cells according to Wikipedia (click here (http://en.wikipedia.org/wiki/Lymphocyte)) and WebMd (click here (http://www.webmd.com/hw/health_guide_atoz/stl158222.asp)).

The Basal layer is the deepest layer of the epidermis.Source: http://uuhsc.utah.edu/healthinfo/adult/skin/anatomy.htm. (Don't panic, but I took this definition from the University of Utah's discussion of skin cancer.)

Here is the path description: Microscopic Evaluation
Sections show focal parakeratosis overlying several areas of the epidermis with vacuolar alteration of the dermal-epidermal junction and dyskeratotic keratinocytes. There is an associated lymphocytic inflammation which extends to the superficial and mid vessels. Melanophages are present in the superficial infiltrate.I found dozens of "hits" that contained the word "focal parakeratosis". Unfortunately, I couldn't come up with a definition for it. :confused: I'm also having problems finding definitions for vacuolar alteration, dyskeratotic keratinocytes and superficial infiltrate. (Again, I got lots of "hits" but no definitions.) I'll keep looking.

I found an article on Pubmed that says that Melanophages can be induced by ultraviolet light, but it doesn't define the term. Here's a link: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=2460508&dopt=Abstract. Again, you might want to ask you doctor.

Comment from Path:
Since eosinophils are not conspicuous in the sections, that would give less weight for this lesion being a drug eruption.
MedlinePlus says that: Eosinophils are white blood cells active in allergic diseases, parasitic infections, and other disorders. An eosinophil count may be ordered if the blood differential is abnormal, or if there is suspicion of specific diseases.It goes on to say that The eosinophil count may help your doctor:

Detect an allergic reaction and assess its severity
Detect a parasitic infection
Evaluate Hodgkin's disease
Assess sensitivity to drugs (particularly some anticoagulants)
Confirm acute hypereosinophilic syndrome (rare but sometimes fatal leukemia-like condition)Source: http://www.nlm.nih.gov/medlineplus/ency/article/003649.htm.

It sounds like the pathologist is leaning against a drug reaction. (Check with your doctors.)

I do not favor a phototoxic reaction based on the multifocal nature of the interface reaction.A search for "phototoxic reaction" led me to e-medicine.com's discussion of "drug-induced photosensitivity" which is defined as:the development of cutaneous disease as a result of the combined effects of a chemical and light. Exposure to either the chemical or the light alone is not sufficient to induce the disease; however, when photoactivation of the chemical occurs, one or more cutaneous manifestations may arise. These include phototoxic and photoallergic reactions, a planus lichenoides reaction, pseudoporphyria, and subacute cutaneous lupus erythematosus. Photosensitivity reactions may result from systemic medications and topically applied compounds.Source: http://www.emedicine.com/derm/topic108.htm

"Cutaneous" (click here (http://www.medterms.com/script/main/art.asp?articlekey=2885)) means the skin.

I take that to mean that the pathologist does not consider the problem to be a reaction to sunlight. That being said, as noted above, the article from Pubmed says "Melanophages" (what ever that is!) can be induced by ultraviolet light. That seems contridictory. :confused: (They may be more then one problem going on here. More questions for your doctor!)

Here's what I got of the web:
Interface Dermatitis - A microscopic term referring to a type of dermatitis that shows lymphocytes attacking the basal layer of epidermis causing vacuolar change in the basal cells or necrosis of basal keratinocytes. This type of inflammation is seen in erythema nodosum (acute interface dermatitis) and in lupus (chronic interface dermatitis).LOL. You and I came up with the same definition! :)

From what I read online and what the derm said is that I have lupus lesions of the skin. Subacute cutaneous lupus erythematosus refers to skin lesions that appear on parts of the body exposed to sun. The derm wants to see me in 2 months. If the rash ( lesions) get worse, he wants me to take the Plaquenil that he prescribed last time that I did not take. The lesions have improved with Kenalog cream and using a sunscreen that blocks UVA and UVB when I have been out in the sun. The derm is writing a letter to my Rhemy, he says that I should be able to continue the Remicade and see if the rash continues into the cooler months when I am not out in the sun, and then we could pinpoint the reason for the eruption.Remicade's Patient Information Sheet (http://www.remicade.com/pdf/PPI.pdf) warns of the possible "lupus-like" side effect:


Lupus-like Syndrome

Some patients have developed symptoms that are like the symptoms of lupus. If you develop any of the following symptoms your doctor may decide to stop your treatment with REMICADE:
• chest discomfort or pain that does not go away
• shortness of breath
• joint pain
• rash on the cheeks or arms that gets worse in the sun.Your derm is concerned about lupus, but he or she is going to write a letter to your rheumy saying that should be able to continue on Remicade. One part of the pathology report seems to indicate that the pathologist does "not favor a phototoxic reaction" but the article in Pubmed says that "Melanophages" (what ever that is!) can be induced by ultraviolet light. As you mentioned, subacute cutaneous lupus erythematosus refers to skin lesions that appear on parts of the body exposed to sun. There's a lot of contridictions going on here. :confused:

Obviously there's something going on. The pathologist seemed to indicate that he or she is leaning against a drug reaction. The fact that your derm is going to write that letter to your rheumy seems to confirm that he doesn't think that the problem was caused by Remicade. I hope that you get an answer soon.

In the mean time, if you haven't already done so, you might want to switch to "free and clear" laundry products. (As I mention in just about every response to someone who is newly diagnosed poster the dyes and fragrances in detergent and dryer sheets, etc. tend to irritate my psoriasis. I've also had detergent related problems on parts of my body that do not have psoriasis. (Here's a link to a post where I describe the problem: http://www.psoriasis.org/forum/showthread.php?p=229270&highlight=elevator#post229270. Again, if you haven't already done so, you might want to consider changing soaps. Here's a link to a previous discussion about psoriasis and soap: http://www.psoriasis.org/forum/showthread.php?t=13629.

I hope this helps.

Good luck!

Feel better!

Mike

[ouchyk]

Cindy,

I have no idea what has caused your rash or what any of the medical jargon means but wanted to let you know that I'm thinking good thoughts for you.

Hang in there,
Karen

[mamaooch]

Thanks for all the links Mike interesting reading. The derm is leaning toward a lupus like skin involvement that does not have anything to do with the Remicade. The fact that Lupus of the skin is sun sensitive in itself could be why it got so bad to begin with. I am giving him a call this am, because yesterday I was too stunned and taken off guard to know what to ask. You have given me plenty of info to work with, I am writing out my questions now.
Also, I already use detergent free of dyes, chemicals, etc. I switched when the itching begin. Thanks for the tip and links to that also.

I appreciate the help more than you know. I did alot of research yesterday and did not get as many hits as you did. I know now why they call you the link master.

Thanks again for all the hard work you put into this.

Have a great day!
Cindy

[baldwin123]

Hope your doctor was able to reassure you about that Path report- try not to worry, Cindy... I hope the flare of ppp in your feet clears for you quickly too... By the way, did you beat your son's fishing record on your vacation? :)
Hang in there, and please let us know how things are going, and let us know if we can do anything for you!
Jen

[mamaooch]

Hope your doctor was able to reassure you about that Path report- try not to worry, Cindy... I hope the flare of ppp in your feet clears for you quickly too... By the way, did you beat your son's fishing record on your vacation? :)
Hang in there, and please let us know how things are going, and let us know if we can do anything for you!
Jen

No, Jen I did not beat his record. My flounder was 16 inches long and his was 17 inches, but I am happy because that is the biggest flounder I have ever caught. As far as talking to the doc today, he was at another office and he will call me tomorrow.

I am hanging loose, this is nothing compared to the PA pain I have endured for two years.

Have a great evening and a good day tomorrow.
Cindy

[SuzanneT]

Awwww, Cindy, I'm so sorry to hear what you're going through! You've had enough already! My thoughts are with you! :)

Sorry your feet are flaring - mine is too!! :( What topical are you using to help it? I've never found a topical that worked for PPPP, and I need something now!!! Woke up this morning with a whole new crop of blisters, I just knew I would flare when I stopped the Soriatane. :eek:

Sue