Erythema ab igne

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Steph20021
Posts: 553
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Erythema ab igne

Postby Steph20021 » Fri Mar 23, 2018 8:01 pm

For those who have chronic pain don’t make the mistake of prolonged overuse of the heat pad as you can get a skin condition called Erythema ab Igne which if severe enough doesn’t go away. It looks like mottled colored skin. I think I have this-I have to call on Monday to get it seen.
Just a warning I had no idea.
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab

Ron50
Posts: 699
Joined: Fri Feb 10, 2006 7:04 pm

Re: Erythema ab igne

Postby Ron50 » Sun Mar 25, 2018 6:35 am

Hi Steph, for years I wondered about a condition I had been experiencing. Most of the time the palms of my hands are red. I have asked a lot of doctors but none were able , or willing to enlighten me. In recent times my nephrologist has come to believe that I am suffering from auto-immune hepatitis. The treatment for AIH is an immunosuppressant in conjunction with prednisone. I already take cyclosporine twice a day and when I was put on a short sharp dose of pred all of my liver functions that were in the red returned to the black. I was reading up on AIH and it said one of the symptoms was palmar erythema a reddening of the palms of the hands. It appears that there is a cause and effect for pretty well everything, Cheers Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

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mypinkheaven
Posts: 459
Joined: Fri May 20, 2016 4:29 pm
Facebook Username: Sally Cunningham
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Re: Erythema ab igne

Postby mypinkheaven » Sun Mar 25, 2018 11:13 am

I use a heating pad pretty often for abdominal. I knew you could get a burn, but I didn't know about the skin problems. I do make sure I have something like my PJ's between the heating pad and my skin.

I hope yours clears up quickly.

Sally 8)
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Erythema ab igne

Postby MissMolly » Sun Mar 25, 2018 1:48 pm

Steph:
Your post is a valuable sharing of information for others to learn from. Erythema ab igne is not a common/routine finding and can escape diagnosis by physicians because it is not on their radar screen.

I saw 3-4 cases of erythema ab igne during my years as a clinical physical therapist. Prolonged use of heating pads (months of intermittent but sustained use of several hours at a time) is a common denominator. It usually involves electrical heating pads, not the microwave buckwheat packs). The abdomen is the primary site simply because that is where heating pad use among those seeking pain/muscle relief seems to be highest among cases reported. But it can appear at other body locations where the use of a heating pad is prolonged.

The value of posts such as yours is that it brings awareness to a condition get people here might encounter in trying to find home remedies to ease abdominal pain - post surgery, during chemotherapy. The state of medical care is such that we, as patients, have to be informed and knowledgeable in problem- solving our own health care. Your post advances this.

I hope you are feeling a tad better,
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

Steph20021
Posts: 553
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: Erythema ab igne

Postby Steph20021 » Fri Mar 30, 2018 7:49 pm

Ron50 wrote:Hi Steph, for years I wondered about a condition I had been experiencing. Most of the time the palms of my hands are red. I have asked a lot of doctors but none were able , or willing to enlighten me. In recent times my nephrologist has come to believe that I am suffering from auto-immune hepatitis. The treatment for AIH is an immunosuppressant in conjunction with prednisone. I already take cyclosporine twice a day and when I was put on a short sharp dose of pred all of my liver functions that were in the red returned to the black. I was reading up on AIH and it said one of the symptoms was palmar erythema a reddening of the palms of the hands. It appears that there is a cause and effect for pretty well everything, Cheers Ron.

Hi Ron, I hadn’t found a treatment in my readings. Just that if it was mild it would go away on it’s own but could talk months, and if severe then you should get a biopsy as it can mean yiu developed skin cancer as well, and also suggestion of a laser therapy for aesthetic reasons-which I find a,using as I imagine most with this condition and with problems like chronic pain aren’t too worried about their appearance. None of my doctors ever warned me of this risk which annoys me because they know of my chronic ache in my butt and they know I even have a heat pad at work to sit on because it a lot for some relief. The good news is it’s been a week since I discovered the blueish co,oration on my bum and it’s since greatky reduced. I think it’s just pinkish and dry skin now. Keeping an eye on it. Hope you are doing well.
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab

Steph20021
Posts: 553
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: Erythema ab igne

Postby Steph20021 » Fri Mar 30, 2018 7:54 pm

mypinkheaven wrote:I use a heating pad pretty often for abdominal. I knew you could get a burn, but I didn't know about the skin problems. I do make sure I have something like my PJ's between the heating pad and my skin.

I hope yours clears up quickly.

Sally 8)

Hi sally, that’s good. I too always had sometching between my butt and the electric heat pad but if I wasn’t sitting on it I was lying on it, definitely hours at a time, and day after day. I find it soothing and comforting for warmth even when I was t in pain. I didn’t feel any burning or itchiness until recent,y so I didn’t know anything was changing back there. Now it’s just pink and seems to be remedying itself. It surprises me more people don’t complain about this as I imagine so many of us use heat sources for our pain to reduce the need for medication and to aid in the relief of chronic pain. I have been giving heat a weeks break and it’s done me good, but I sure do miss it. From what I read, it can even be developed by using a hot laptop on your lap for prolonged excessive use. Laptops do tend to get quite hot but I suppose the number of hours and days of repeated use wouldn’t hallen for folks as often as a hot water bottle or heat pad.
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab

Steph20021
Posts: 553
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: Erythema ab igne

Postby Steph20021 » Fri Mar 30, 2018 8:01 pm

MissMolly wrote:Steph:
Your post is a valuable sharing of information for others to learn from. Erythema ab igne is not a common/routine finding and can escape diagnosis by physicians because it is not on their radar screen.

I saw 3-4 cases of erythema ab igne during my years as a clinical physical therapist. Prolonged use of heating pads (months of intermittent but sustained use of several hours at a time) is a common denominator. It usually involves electrical heating pads, not the microwave buckwheat packs). The abdomen is the primary site simply because that is where heating pad use among those seeking pain/muscle relief seems to be highest among cases reported. But it can appear at other body locations where the use of a heating pad is prolonged.

The value of posts such as yours is that it brings awareness to a condition get people here might encounter in trying to find home remedies to ease abdominal pain - post surgery, during chemotherapy. The state of medical care is such that we, as patients, have to be informed and knowledgeable in problem- solving our own health care. Your post advances this.

I hope you are feeling a tad better,
Karen


Thanks so much Karen for your nice post. The sub q liquid dilauded has been helping with the deep ache in my butt. My colleagues get a kick out of it when I say I have my pain in the butt, or that it’s returned they say it’s not me this morning! However, I fear I’m already adapting to it after taking it for 2-3 weeks. The nurse for palliative care has asked me my thoughts about going on the pain pump but I’m not sure I’m psychologically ready for that yet. In my mind I’m still an early stage 4. And if I’m honest it scares me to go on the pump.

As I’ve mentioned in responses above, the coloration on my butt is on its way to normal, improving, less blue and purple, just a bit of blue and pink now. I’ll continue to take a break from the heat. The only dr I’ve to,d is my radiation dr who I just happened to see recently and I happened to mention it as he was asking if the recent radiation had helped with my pain at all. And I sort of said speaking of radiation and the pain in my butt...

I may still tell my onco and palliative dr. so they can be reminded to warn other patients of this who have chronic pain and or love their heat sources.
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Erythema ab igne

Postby MissMolly » Sat Mar 31, 2018 2:49 pm

Steph:
I am on Palliative Care and have been on narcotics for 2-3 years.

Before considering a pain pump, I would think your Palliative Care team would offer you a long-acting narcotic such as the Fentanyl duragesic skin patch. It comes in several dosages, the medication absorbed through the skin (bypassing the bloodstream and liver for uptake/metabolism). I am on the Fenrsnyl patch and appreciate its pain moderating benefits. The Fenranyl patch releases medication on a time released basis, providing a small/constant dosing of narcotic over time. The patch is discrete (I place mine on my upper, inner arm). I change the patch every 48 hours, although others get relief with a 72 hour changing cycle. I do not feel “snowed” nor over medicated using the Fentanyl duratesic patch. It allows me the gift of pain relief so that I can be up and walk and participate in life to the degree that I am able. I also have supplemental oral dilaudid for short-acting pain control.

A pain pump involves placing a thin catheter placed in the spinal canal/spinal fluid with a fanny pack pump that delivers liquid morphine or dilaudid (or other muscle relaxants). The vertebral level corresponds to the area (dermatome) of pain. A pain pump is limited to treating pain in a single, defined area. A pain pump is not an ideal choice if a person has more than one body area of pain.

Ongoing pain is exhausting in its own right. I hope that your Palliative Care team will work with you to find an optimal narcotic cocktail that helps you feel like your usual and familiar self.
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

Steph20021
Posts: 553
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: Erythema ab igne

Postby Steph20021 » Sun Apr 01, 2018 1:00 am

MissMolly wrote:Steph:
I am on Palliative Care and have been on narcotics for 2-3 years.

Before considering a pain pump, I would think your Palliative Care team would offer you a long-acting narcotic such as the Fentanyl duragesic skin patch. It comes in several dosages, the medication absorbed through the skin (bypassing the bloodstream and liver for uptake/metabolism).
...
Karen


Hi Karen,
I’m on the fentanyl patch already. I’m on a 75mcg and change every three days but honestly I didn’t notice any difference between the 50 and 75, and I wonder if I don’t respond to it. I started with the patch and the liquid dilauded is supposed to be my breakthrough but I take about 12ml of it a day right now, 1ml (2 syringes) about every four hours.

I used to just take just morphine pills for pain, then I went to the fentanyl patch with morphine pills as breakthrough but I quickly escalated my patch up to where I am now (75) and when I got up to 50 I said this is crazy maybe we should be reevaluating the morphine pills as pain is still there when I take the pills, and then I noticed I wasn’t full digesting morphine pills it came out my ileostomy and so we didnt know how much I was actually receiving. So I went to liquid morphine sub q and still got no relief - they injected me and waited and watched while I was in the office. So we moved to the dilauded sub q which has been great for 2-3 weeks now, and somewhere in there I moved the patch up again from 50 to 75.

It’s a lot of medication for a fairly low tumour burden and they can’t find source if my butt ache. We know the abdomen wall pain makes sense because there’s a mass there going into the muscle.

As for pain pump, I didn’t realize it would require this kind of tube insertion in the back, I assumed it would be just like getting IV hydration where they hook it up to your port? And I assumed it would be the same type of pump. I call it pain pump but maybe it’s somwthuing else but she said walkman sized and fanny pack and continuous drip slow all day and I can push for a boltus.

I’m a bit discouraged that I sound like a difficult patient or even impossible because it can’t be that I don’t respond to anything and have adapted to everything. I worry I’m running out of options?
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Erythema ab igne

Postby MissMolly » Sun Apr 01, 2018 10:30 am

Steph:
Pain is pain is pain. You need not have a large or noticeable mass or other anatomical finding in a CT scan or MRI to have intractable pain. Pain can be of origins not visible on CT scans or imaging. Nerve irritation, nerve entrapment, tethering of scar tissue, as well as physiological alterations to the peripheral or central nervous system that result in the nervous system being re-set to a high degree of hypersensitivity.

A pain pump would require placement of an intrathecal catheter in a portion of your low back/lumbar area that would correlate to the pain distribution in your buttocks/rectal area. The reservoir of narcotic can either be placed internally (superficially under the fat of the abdomen or kidney area/flank). Or the reservoir of narcotic can be housed in an external fanny pack that you would wear. The pain pump delivers a continuous drip of narcotic using a programmed software, delivered via the intrathecal catheter. There is usually a portable wand/remote control where the patient can deliver a pre-set bolus for breakthrough pain. The physician sets the number of bolus deliveries available and over a determined span of time.

The advantage to a pain pump is that the narcotic would be delivered directly to the spinal roots that innervate the buttock/rectal area where you have the greatest pain. You are no taking systemic medication. The downside is that a pain pump can treat only one area of pain. It can treat your buttock pain but likely would not be able to address any other pain sites. The pain pump is site specific.

People respond differently to narcotics based on individual neuro/brain receptors. That you are not getting adequate pain relief from the Fentanyl patch is not a statement that you are somehow a difficult patient. Fentanyl may not be a good fit for you at an individual biochemical level.

I do know that I have had to moderate my expectations of pain management. My narcotic “cocktail” of a Fentanyl patch (75 micrograms, changes every 48 hours) and oral dilaudid (8 mg, 5 x a day) lowers my pain to where it is not in the forefront of my every waking moment but it does take away my pain. I have severe avascular necrosis of my femoral heads and jaw due to long-term use of corticosteroids for Addison’s disease (bone necrosis due to inadequate vascular perfusion). I am a petite 85 pounds. I take enough narcotic for a small herd of zebra. I am not “stoned” nor loopy. I have developed a tolerance to narcotics. Likely, you have also developed a physiological tolerance to narcotics.

Keeping questioning your Palliative Care team. There are any number of permutations of medications to reduce pain.

But it is also important to recognize that pain management most often is not able to take away one’a pain to a blissful zero/no pain. I live with daily pain that I would rate as a 4 on a subjective pain scale with my prescribed narcotics. It sure beats the agonizing pain that I would experience without the narcotics that I receive.

I also use guided imagery, yoga, water aerobics in a warm therapy pool, and diversion activities (keeping my attention to a needlepoint project, playing with my new puppy) as tools for pain control. Healing Well has a nice internet support forum for chronic/persistent pain. Feel free to visit the Healing Well chronic pain forum. I have found the site to be a place of empathy and understanding. Several people on the forum have pain pumps.

Sending you positive karma for a low pain day,
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.


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