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TRAINOF4's Photo TRAINOF4 Posts: 2,650
2/16/10 7:06 P

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I don't take Enbrel - take Humira. They are all pretty similar in any case, but I've never seen the rash coincide with taking any of my RA meds & get some of these rashes when I've been off my meds for more than a month!

The tiny bumpy rash is the worst itch-wise. I mean, horribly itchy. Nothing OTC helps-pills or creams. I take hydroxyzine (a prescription med that amazingly helped Thank God!)

Presently have the scaly rash ALL OVER & some of it has peeled deeply & is leaving bloody scabs! See my GP tomorrow & will show it to him. It doesn't usually get blood & scabby. Currently fighting off another round of thrush so concerned about my immune status.

Yes indeed - it does feel good to know we're together with this annoying & unpredictable disease!

Stay calm and carry on.
ANGEL1066's Photo ANGEL1066 SparkPoints: (0)
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2/13/10 12:10 A

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The tiny isolated itchy red bumps I get are so small they would not be noticed if they weren't so itchy nor are they closely associated with the Enbrel, as, not near the injection site, not appearing same day I take the shot or the like, so I didn't make the connection - still not positive there is one. But it is interesting that so many of us get a rash. From our meds, or the disease itself.

"Mountains DO move...One stone at a time." ~Rick Beneteau
Do not let what you cannot do interfere with what you can do. - John Wooden, Hall of Fame college basketball coach
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MICHELLE311106's Photo MICHELLE311106 Posts: 6,788
2/12/10 8:26 P

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I have only been on Enbrel for 5 weeks and so far no rash like you all have mentioned here. Maybe I'm the lucky one.

Shell

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1888MICHELLE's Photo 1888MICHELLE Posts: 4,529
2/11/10 8:28 A

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I get the insect bites too....I have one now. I may only get two or three at a time. I've been told that they are tiny blood blisters, even though the fluid is clear.

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ANGEL1066's Photo ANGEL1066 SparkPoints: (0)
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2/9/10 9:21 A

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I GET THAT "occassional outbreak of small insect-looking bites. They sometimes resemble an ant or mosquito bite, but with a clear fluid in them like a blister." ON MY TORSO, USUALLY ISOLATED red bumps that itch like mad. Only noticed them after starting the ENBREL. Still, if that's the worst it can do, a small price to pay for being able to walk better, get in & out of a car on my own, etc. I hadn't made the connection - will discus with my rhuemy next time, if can remember that long. Thanks for the tip! It actually feels good to rant some with folks that know the feeling. May God smile on your day!

Edited by: ANGEL1066 at: 2/9/2010 (09:22)
"Mountains DO move...One stone at a time." ~Rick Beneteau
Do not let what you cannot do interfere with what you can do. - John Wooden, Hall of Fame college basketball coach
With exercise, doing some is always better than doing none. - Spark article
MAKE THE BEST FOOD CHOICES YOU CAN TODAY - and then, try it again tomorrow!- Dr. John La Puma, M.D.


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TRAINOF4's Photo TRAINOF4 Posts: 2,650
2/9/10 3:52 A

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I've noticed that everyone I have ever known w/RA has had some sort of rash that no doctors can diagnose. The rashes vary to some degree from one patient to another. I get about 3 different rashes.
One is not related to the RA, but is of genetic origin & seems to be frequent in people of Native American blood! This rash appears on me during my early sun exposures in late Spring/Early Summer regardless of sunblock use. It is called polymorphic light eruption. The rash consists of small, circular spots filled with fluid which itch, but when itched, they sting & burn. It clears up with topical steroid cream & after the initial breakout at the beginning of the stronger sun during the year it doesn't reappear until the next year. As I mentioned...sunscreen of any strength does nothing to prevent it.

The second I get is a rash that looks very much like ringworm, but is not. It starts out as a red circle, or near circle, with raised borders. It doesn't itch or burn, eventually become crusty and the top layer flakes off, then the area eventually fades to a sort of yellow color and there is a scar there until the next few layers of skin grow off. This rash appears on all parts of my body, but more on my torso than anywhere else. I have not yet had it biopsied.

The third rash is an occassional outbreak of small insect-looking bites. They sometimes resemble an ant or mosquito bite, but with a clear fluid in them like a blister. They ITCH HORRIBLY. No amount of benadryl (topical or oral) controls the itch. Hydroxyzine seems to work best (for me anyway.) No one has figured out what causes THAT rash either.

I have seen at LEAST 5 diffferent rheums and MORE derms without a diagnosis for the last 2 rashes. The 1st rash was diagnosed by a GP I had for about 6 yrs before moving out to the sticks & too far away from her. She was an awesome doctor.

My suspicion is this: because RA is an inflammatory disease rashes are probably more common to us than others & diagnosing them is probably very difficult. I recently read that there are many people who have combinations of rheumatic diseases (lately being called "overlap syndromes".)

Yep, I can understand your rant. It's all extremely annoying.

My latest ventures with rheums has been with a doc who INSISTS I have FM even though I don't have any of the pressure points (although quite honestly if you press hard enough on anyone in those areas it would hurt them - those areas happen to be laying on top of areas with little flesh between the surface & the bone or very close to sensitive nerves-like the elbows...that pressure point is very close to the nerve that causes the "funny bone" pain. NOT that I don't believe in FM, but I find that a doc who immediately says I have FM when I complain of pain an annoying person!) AND he said that he had labs that were 50/50 on the lupus diagnosis (but wouldn't run them again to find out for sure), and his staff constantly lost all kinds of paperwork...AND forgot to give him phone messages (or he forgot to call & blamed them.)

Then the next rheum wanted to take me off ALL of my RA meds "to see what would happen." Even tho I was doing quite well on my medication regime! When I asked what they'd do when I began to have extreme pain & stiffness they claimed they'd make sure their nurse knew I should be given priority status to get an appt. Well, when it happened it took 2 wks to get a call back & when they DID call back they increased my methotrexate from 5 to 10 mg a wk, but gave no other scripts for relief! They also insisted I didn't have lupus, but wouldn't test for it to be sure. Well - I'm done with them. So on Mar 3 I see yet another rheum (this will be my 7th I believe since 1995.)

My GP and hematologist/oncologist are convinced I DO have lupus because of the strange disc-shaped rash, my constant battles w/anemia, low white count, and low platelets.

Does anyone else ever wish they were NORMAL like eeryone else?

Stay calm and carry on.
ANGEL1066's Photo ANGEL1066 SparkPoints: (0)
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2/8/10 11:27 P

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THAT IS HOW DRS. USED TO BE RE ALL AUTOIMMUNE REACTIONS. THE CORTICOIDS HAVE BEEN THEIR FALL BACK SINCE DISCOVERED. STILL, THAT BEATS "GO HOME, TAKE 6 BATHS A DAY AND ALL THE ASPIRIN YOU CAN STAND," WHICH IS WHAT MY 1ST DOC TOLD ME AT AGE 16. EVEN TODAY, THEY USUALLY DON'T REALLY UNDERSTAND WHY THE MEDS WE WORK, OR DON'T. THERE ARE JUST MORE THINGS TO TRY. KEEP LOOKING. I DO HOPE YOU FIND SOMETHING THAT WORKS. GOD BLESS.

"Mountains DO move...One stone at a time." ~Rick Beneteau
Do not let what you cannot do interfere with what you can do. - John Wooden, Hall of Fame college basketball coach
With exercise, doing some is always better than doing none. - Spark article
MAKE THE BEST FOOD CHOICES YOU CAN TODAY - and then, try it again tomorrow!- Dr. John La Puma, M.D.


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NIKEGIRL1967's Photo NIKEGIRL1967 Posts: 478
2/8/10 3:55 P

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Thanks so much, Angel, for your direction...unfortunately, it is not due to the pool...i do train in pools, but I am a competitive open water swimmer...in 2007, I was training to swim the Hudson River for charity and Bermuda was an open water swim...the Hudson is fresh water and Bermuda was salt water...no similarities that we have been able to think of, which annoys me even further.

The only similarity is that I was on biologics at the time; Enbrel the first time and now Orencia.

The most annoying issue, for me, is that the docs are only too happy to say "Well, I can't really tell you what it is" (not verbatim) and to prescribe prednisone for occurrences..that is what pisses me off.

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ANGEL1066's Photo ANGEL1066 SparkPoints: (0)
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2/8/10 1:44 P

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YOU MENTIONED BURMUDA & ALSO WATER THERAPY, PRESUMABLY IN A POOL. 2-3 YEARS AGO, ABOUT THE TIME OF YOUR 1ST ATTACK, THE TECHNOLOGY FOR SALT TREATMENT OF SWIMMING POOLS - INSTEAD OF CHLORINE - REACHED OUR AREA & ALL THE POOLS SWITCHED OVER. MY SISTER HAD SUCH A BAD ITCHY RED RASH REACTION THAT SHE HAS GIVEN UP SWIMMING, WHICH HAD BEEN HER FAVORITE EXERCISE. I GOT ITCHY SKIN ALSO, BUT NO RASH. I JUST SHOWER LONGER AFTER, RINSE VERY WELL WITH PURE WATER & USE A MOISTURIZER. COULD THIS BE YOUR SENSITIVITY?
I ALSO USE ENBREL, & HAVE BEEN CAUTIONED AGAINST SUN REACTIONS WITH IT. SO FAR NO REACTS. WE WOMEN ARE ALL SO LOW ON VITA-D, I HATE TO GIVE UP MY SUN! MOSTLY, I COVER UP, LEAVING FACE & HANDS EXPOSED.

"Mountains DO move...One stone at a time." ~Rick Beneteau
Do not let what you cannot do interfere with what you can do. - John Wooden, Hall of Fame college basketball coach
With exercise, doing some is always better than doing none. - Spark article
MAKE THE BEST FOOD CHOICES YOU CAN TODAY - and then, try it again tomorrow!- Dr. John La Puma, M.D.


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KNITSTRONG's Photo KNITSTRONG Posts: 267
2/5/10 2:12 P

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I'm pretty sure your doctors would have thought of this and ruled it out - but are you sure it isn't hives? (here's a link: health.google.com/health/ref/
Hives
I've had hives on and off this week and I'm not at all sure why. Perhaps you had an initial reaction to the sun that has caused an over-active immune reaction (that's my own term, so don't expect to be able to look it up, lol) When I had hives as a child, they would tend to come and go for weeks at a time, then just disappear for years. The link has pictures so you can compare your rash to hives.

The article is good too, and says they are linked to, among other things, extreme sun exposure and to autoimmune diseases. If you take a Benedryl, and they improve, it could very easily be hives.

Plus, it doesn't have to be the same reason each time you have hives.

One of my known triggers for hives is very cold water (or cold air) directly on my skin. If I just get a little bit cold, it just gets red and itchy and doesn't progress to the raised spots.

Edited by: KNITSTRONG at: 2/5/2010 (15:42)
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1888MICHELLE's Photo 1888MICHELLE Posts: 4,529
2/5/10 8:11 A

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It's funny...I get the butterfly rash, but I've never tested positive for lupus...just RA and AS.

Michelle


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NIKEGIRL1967's Photo NIKEGIRL1967 Posts: 478
2/4/10 1:12 P

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Michelle, that is very interesting!...that is along the lines of what my derm had said in October - and she said that I had no business going to sunny places on holiday!...how the hell was I to know...LOL!

And BKWERM, you are also intuitive...I had been diagnosed with JRA when I was two, but in 2008, my then-rheumy said she was thinking psoriatic because of nodules between the second and third phalanges rows on my fingers...but the official dx has been kept at R.A.

And now my current rheumy is saying that some people have characteristics of both lupus and R.A...but I do not get the butterfly rash and I definitely do not get the rash on my face, thank goodness...

Who needs docs - I have my fellow Sparklers..you are good!!

Thanks for taking the time to care and to share...

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1888MICHELLE's Photo 1888MICHELLE Posts: 4,529
2/4/10 8:51 A

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All the women in my family have arthritis in one form or another, and it seems that all of us break out in a rash in the sun (sunscreen or not). 3 of them have been told not to be in the sun at all because the rash is so bad. Those 3 are not on any meds.



Michelle


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JACOBSS914's Photo JACOBSS914 Posts: 334
2/3/10 10:23 P

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My wife's best doctor was her OB/GYN, he figured out why she was sick everyday for almost three months straight. She was given to much of a drug used to treat tetnis and that is what made her sick. We have since switched general care practitionars.

good luck finding the source

Now I have taken control...


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BKWERM's Photo BKWERM SparkPoints: (192,038)
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2/3/10 6:38 P

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Could it be psoriatic arthritis? Or, I read somewhere that people with RA can sometimes get lupus, which has a butterfly rash?

I don't know. I'm just guessing.

Good luck.

My name is Joanna not Joanne, please and thank you.

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NIKEGIRL1967's Photo NIKEGIRL1967 Posts: 478
2/3/10 10:06 A

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Thanks SO much for all of your words of encouragement and support...to try to answer some of the questions and/or comments:

I was on Enbrel when the rash initially showed up in July-ish 2007; then discontinued Enbrel in October 2007

On Orencia when the 2nd, 3rd & 4th occurrences happened (10.09 - 01.10)

7.07 - Rash appeared as a round, ringworm-ish looking spot on left outer bicep, then exploded to thighs, upper chest, forearms and armpits...characteristics - spots are very itchy, red, warm and raised

10.09 - Rash appeared again after coming back from Bermuda (left outer elbow area, forearms); this time, it did not get a chance to really explode as I addressed it much sooner and was put on Prednisone; same appearance

I have used the same products for years...the first occurrence in 2007 was after I was placed on Enbrel and the rash was very slow to gain momentum...mind you, this was also my first major RA flare since the age of about 12 (about 27 years).

At first, I was almost excited that the rash appeared in October because I am on Orencia now, not Enbrel...so, I thought that I could go back to Enbrel (worked fabulously outside of the rash)...however, my dermatologist said no, that the rash could be a drug reaction triggered by the sun (although I don't think that was the case in 2007 - but I was doing open water swims then, as well, so could be).

It just really disturbs me that all involved seem to have thrown in the towel and thrown their hands up and seem to be comfortable with me treating myself with Prednisone when the rash appears.

Oh well; that's life, right?..LOL!



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LJR4HEALTH's Photo LJR4HEALTH Posts: 33,174
2/2/10 8:36 P

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Hi NIKEGIRL1967 I can understand your frustration I have reoccurring rash that I have no clue why it comes @ 1st I also thought it was heat rash

I have no answer for you on that just support I know it can be painful @ times Hopefully new doctor will figure it out for you

Linda (Florida - Eastern Standard Time )

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MICHELLE311106's Photo MICHELLE311106 Posts: 6,788
2/2/10 7:43 P

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Kelbstar, can you describe your neck pain for me? I have had neck pain for months and it is getting worse. I am curious as to if we have the same pain.

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SERENEMOM71 SparkPoints: (0)
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2/2/10 3:25 P

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I don't have any answers - just support. Good luck in tracking down the cause of the rash. Keep on looking for docs until you find one who is interested in helping you - don't give up! In the meantime, be your own detective as the earlier posts have suggested. There really are good docs out there who really do care! It's just finding them and it's like a hunt! Talk to the local arthritis society and go to one or two of the meetings. Ask some of the members who they go to and sometimes that is a good way to find a good doc. Also if there is a medical school nearby - you can find a good doc who is interested in a "mystery" and is willing to help you solve it!

emoticon to you!
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KELBSTAR Posts: 287
2/2/10 3:19 P

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as i struggle with several unknowns myself with the pain in my neck area, i have the utmost compassion for you right now. i've also just fired my Rheumy and go to see the new one on Thursday, let's hope they can find my veins for the lab work as my arm still has a fist size bruise from the IV attempts for my cervical procedure last week... i look like a junky. i hope the best for ya girl. please keep us posted so we know how you are and can learn from your experiences as well.

CHANCE4LIFE's Photo CHANCE4LIFE Posts: 15
2/2/10 2:19 P

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I am a retired Esthetician, with Still's disease, so I come at this from multiple backgrounds. First of all, RA, Lupus, etc. or not, you MUST use a physical sunblock daily. Malignant melanoma is still the number one killer in the US (because of metastases)
Because your rash seems to be in the same general area, look at lack of sun protection; different shampoo/conditioner; different detergent/softener. Please, everyone start using sunblock on your babies and encourage them to continue throughout their lives. On another note, my Still's disease was characterized by a salmon-colored rash at the onset.

Health and Happiness to you, and all you hold dear.


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PEWISMA Posts: 65
2/2/10 1:19 P

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I understand the frustration of trying to find out something that no one you are working with has the answers to...been there, done that. Have you been on Enbrel every time the rash has shown up? Has the rash been in the same places and does it look the same all three times? If any of the variables is different, then the rash can't be what they have said it is. If the rash shows up when you are not on Enbrel, then it can't be the drug. If it doesn't look the same each time, then it can't be attributed to the same thing each time, either. Have you been in the sun without protection each time? (You mentioned going without sunblock.) That would indicate the standard lupus sun reaction. Maybe the best thing would be to sit down and look for any thread of commonality among the events leading up to the appearance of the rash each time. Did you eat something that could cause a reaction. Did you put on a lotion, soap or perfume that could be the offender? Did it ever show up on another part of your body? There has to be something that can point to the trigger. Look at it as a puzzle that needs to be solved. I often find answers when I write things down in logical lists. I wish you luck and wish I had an answer.

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NIKEGIRL1967's Photo NIKEGIRL1967 Posts: 478
2/2/10 12:58 P

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Hey, y'all...I didn't sleep much last night so that is probably what is contributing to my feeling compelled to just go off about this...I guess this is just one of those days where I have had it with the R.A. and doctors..

So, this is the deal...I went to Bermuda for a swimming race back in October...when I came back, I had a hot, red, itchy rash erupt on my upper chest and outside of upper arms...I thought it was a heat rash (yeah, on race day, I let the sunblock slip and didn't put any on) and just tried slapping OTC stuff on it, which didn't work...I went to my dermatologist and when she saw it, she immediately felt that it was the same rash that had appeared in late 2007, which was attributed to a lupus-like reaction to Enbrel, which I was taken off of due to the rash.

In 2007, my derm had the rash biopsied - twice...the findings that came back were that it was potentially attributed to either a drug (Enbrel) and/or the R.A...when I was taken off Enbrel, the rash disappeared...

Then, in October 2009, it reappeared after I came back from Bermuda...the rheumy I had at the time of Bermuda didn't even want to see me!!...she didn't want to see the path reports from my derm from 2007!!...she simply prescribed Prednisone over the telephone and said that the next time I went to see her, in six weeks, she would do a lupus blood test...there had been other issues with her, so that just pissed me off and I decided to switch (after conferring with my derm of 14 years)...so, I am seeing a new rheumy, who is a referral from my derm...even this doctor doesn't know what to do.

The rash has reappeared THREE times since Bermuda and now, I simply begin myself on a prednisone taper until it goes away (I HATE to take that steroid!)...when I called my rheumy last week to communicate to her that the rash had come back, she never returned my call...her feeling is that RA can sometimes result in rashes, that I could have a cross between lupus and RA, and that basically she has no idea of what the rash is.

So, that's it..no one can give a definitive answer - after two years, four occurrences, three rheumys and one derm...so, i guess i just medicate my damn self when it appears and pay it no mind.

UGGGHHH!!!

As always, thanks for listening.

Once i get sleep, I will be fine..LOL!

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