Need help getting dermatologist to help with psoriasis pain
December 26, 2012 5:36 PM Subscribe
Pain from psoriasis is very bad, hydrocodone does almost nothing, and my dermatologist disavows responsibility for helping.
I've been approved for patient assistance for Humira and should get my first shipment this Friday. However, it takes a while for the drug to have an effect. Meanwhile I'm in a lot of pain.
My dermatologist's office, when I called Friday to ask for something other than the Vicodin prescribed (which seems to do nothing), said I should contact my primary care physician for pain meds.
PCP's office offered me an appointment for late next week (the office is closed this week), but aren't comfortable prescribing me meds when I haven't seen him for months, and have never seen him for psoriasis specifically.
PCP's office opined that it's odd that the dermatologist's office would refer me back, since derm is treating me for the condition. "Especially since you pay cash!"
I have no health insurance and pay cash for all doctor visits. I would really like to avoid the charity ER - I went once during the xmas season for pneumonia and waited for over 24 hours - but it's painful to walk, I'm having trouble getting to sleep, and can't concentrate.
My dermatologist's office will be open tomorrow. I have already left a message saying that I need different pain meds. A topical numbing agent is my ideal, but the Lidocain I've tried does nothing but sting. Of course I'm nervous that asking for something better/different than Vicodin might be seen as drug-seeking behavior, even though I have no history of that.
What can I can say tomorrow when the dermatologist's office phones back, to get them to prescribe something that will offer some relief?
I've been approved for patient assistance for Humira and should get my first shipment this Friday. However, it takes a while for the drug to have an effect. Meanwhile I'm in a lot of pain.
My dermatologist's office, when I called Friday to ask for something other than the Vicodin prescribed (which seems to do nothing), said I should contact my primary care physician for pain meds.
PCP's office offered me an appointment for late next week (the office is closed this week), but aren't comfortable prescribing me meds when I haven't seen him for months, and have never seen him for psoriasis specifically.
PCP's office opined that it's odd that the dermatologist's office would refer me back, since derm is treating me for the condition. "Especially since you pay cash!"
I have no health insurance and pay cash for all doctor visits. I would really like to avoid the charity ER - I went once during the xmas season for pneumonia and waited for over 24 hours - but it's painful to walk, I'm having trouble getting to sleep, and can't concentrate.
My dermatologist's office will be open tomorrow. I have already left a message saying that I need different pain meds. A topical numbing agent is my ideal, but the Lidocain I've tried does nothing but sting. Of course I'm nervous that asking for something better/different than Vicodin might be seen as drug-seeking behavior, even though I have no history of that.
What can I can say tomorrow when the dermatologist's office phones back, to get them to prescribe something that will offer some relief?
Response by poster: Pain is from large psoriatic lesions covering shins and some of my calves, also small pinpoints all over my body.
posted by goofyfoot at 7:02 PM on December 26, 2012
posted by goofyfoot at 7:02 PM on December 26, 2012
My impression from what you've related is that the dermatologist isn't comfortable with managing pain. That is probably because dermatologists rarely need to prescribe narcotic pain medications and thus may be overly conservative about using them. You'd probably be better off seeing your primary care who is very used to prescribing pain medicines and would likely give you less of a hard time about it, but...
Whoever you see, you definitely have to tell them that the Vicodin is not working. Be very specific in the way you say it so that they can parse what you are asking for clearly. I would say something like: "So - I've been trying this Vicodin, which is unusual for me because I do not use narcotic pain medications, but the Vicodin does not bring the pain to a tolerable level. I cannot sleep and the pain is interfering with my ability to do my regular daily activities. I do not want to be on narcotic medications for anything more than the very short term, what I want is to treat the underlying cause of the pain - the psoriasis. There are X weeks until the Humira should be on board. Can you give me a prescription for a different pain medication to use until that time?"
Don't ask for a specific medication, don't ask for something "better" or "stronger" - you just want something "different"! - and for the love of God, don't refer to the meds as "vikes" or "percs" (hopefully you would not do this anyway). Vicodin is a great and strong pain medication but like all medications, it works better for some people than others, and may not always be the right choice for everyone. If they bring up your PCP, point out that you cannot get controlled substances from your PCP over the phone, and you can't be seen there until next week.
It sounds like a topical medication may not be a good choice. Topical medications like lidocaine are not meant to be used on large areas of the body - that puts you at risk for overdose which can be very dangerous.
posted by treehorn+bunny at 7:40 PM on December 26, 2012 [4 favorites]
Whoever you see, you definitely have to tell them that the Vicodin is not working. Be very specific in the way you say it so that they can parse what you are asking for clearly. I would say something like: "So - I've been trying this Vicodin, which is unusual for me because I do not use narcotic pain medications, but the Vicodin does not bring the pain to a tolerable level. I cannot sleep and the pain is interfering with my ability to do my regular daily activities. I do not want to be on narcotic medications for anything more than the very short term, what I want is to treat the underlying cause of the pain - the psoriasis. There are X weeks until the Humira should be on board. Can you give me a prescription for a different pain medication to use until that time?"
Don't ask for a specific medication, don't ask for something "better" or "stronger" - you just want something "different"! - and for the love of God, don't refer to the meds as "vikes" or "percs" (hopefully you would not do this anyway). Vicodin is a great and strong pain medication but like all medications, it works better for some people than others, and may not always be the right choice for everyone. If they bring up your PCP, point out that you cannot get controlled substances from your PCP over the phone, and you can't be seen there until next week.
It sounds like a topical medication may not be a good choice. Topical medications like lidocaine are not meant to be used on large areas of the body - that puts you at risk for overdose which can be very dangerous.
posted by treehorn+bunny at 7:40 PM on December 26, 2012 [4 favorites]
Oh honey, im so sorry.
Are the lesions cracking? I had some topical pain meds for that before, I think it was lidocaine? there are absolutly other options. I wish i could name a few, but I've had the most success with prevention through diet and Milk thistle.
Dont feel bad about talking to as many doctors as it takes- having uncontroled pain is unacceptable. Different meds dont mean more powerful and doesnt automatically mean drug-seeking. Before you go in the best time go prepared. Write down all the pain meds you've taken and how you've reacted to each one. It can be particarly difficult when you're in pain to fight with an unresponsive doctor, so give yourself as many tools as you can. Good luck.
posted by Blisterlips at 8:00 PM on December 26, 2012
Are the lesions cracking? I had some topical pain meds for that before, I think it was lidocaine? there are absolutly other options. I wish i could name a few, but I've had the most success with prevention through diet and Milk thistle.
Dont feel bad about talking to as many doctors as it takes- having uncontroled pain is unacceptable. Different meds dont mean more powerful and doesnt automatically mean drug-seeking. Before you go in the best time go prepared. Write down all the pain meds you've taken and how you've reacted to each one. It can be particarly difficult when you're in pain to fight with an unresponsive doctor, so give yourself as many tools as you can. Good luck.
posted by Blisterlips at 8:00 PM on December 26, 2012
I have no idea if it is counter-indicated for psoriasis open lesions, but you might ask about lidocaine patches. They were originally created for shingles and are available only by prescription. I use them for joint pain and they work far better for me than narcotics.
posted by hydropsyche at 7:33 AM on December 27, 2012
posted by hydropsyche at 7:33 AM on December 27, 2012
I agree with talking to your GP instead of the dermatologist, and inquire about going to a pain clinic. They specialize in pain management, and could work with you to manage the pain with drugs that are better for you.
posted by ldthomps at 8:53 AM on December 27, 2012
posted by ldthomps at 8:53 AM on December 27, 2012
I just came in to say bandaging the lesions on my hands caused by eczema has brought me much relief (though not a solution) when they get really bad. It keeps moisture on the skin and prevents the cracks from drying out and getting irritated and inflamed.
Try applying one of your creams, then gauze and a tensor bandage to hold it on your leg lesions.
posted by ergo at 6:19 PM on December 27, 2012
Try applying one of your creams, then gauze and a tensor bandage to hold it on your leg lesions.
posted by ergo at 6:19 PM on December 27, 2012
Response by poster: Thank you all.
My dermatologist's office didn't respond - I won't see him again - so I sought help from an ER, where I was prescribed percocet and lidoderm patches and was given a piece of advice I'd never heard before (and I've had psoriasis since I was a child): put vaseline on the cracking lesions.
I put petroleum jelly on a lesion on one leg before I took my dog for a walk, and my goodness, it works! The difference in comfort between moving that leg and the other is incredible. Even with the lidoderm patches the ER doc put on me, the petroleum jelly made the difference. It feels sorta miraculous. This means I won't have to take the vicodin or the percocet. Yay!
posted by goofyfoot at 9:39 PM on December 28, 2012
My dermatologist's office didn't respond - I won't see him again - so I sought help from an ER, where I was prescribed percocet and lidoderm patches and was given a piece of advice I'd never heard before (and I've had psoriasis since I was a child): put vaseline on the cracking lesions.
I put petroleum jelly on a lesion on one leg before I took my dog for a walk, and my goodness, it works! The difference in comfort between moving that leg and the other is incredible. Even with the lidoderm patches the ER doc put on me, the petroleum jelly made the difference. It feels sorta miraculous. This means I won't have to take the vicodin or the percocet. Yay!
posted by goofyfoot at 9:39 PM on December 28, 2012
Petroleum jelly is wonderful for rashes and scrapes and dry skin and general skin owie stuff; I'm glad you discovered it sooner, because I am late here recommending it to you.
posted by seanmpuckett at 6:52 AM on December 29, 2012
posted by seanmpuckett at 6:52 AM on December 29, 2012
I am absolutely stunned that nobody in all your years of having cracking skin suggested Vasline. That's mind boggling because it's the first thing most people who know about cracked skin would think of. My daughter has eczema and the dermatologist said "cream in the summer, Aquaphor in the winter". Winter = more dry = more cracking. The reason I'm mentioning this is because you might also want to ask your doctor about Vaseline vs. Aquaphor since it's my understanding that they both have similar "protective" properties but Aquaphor has more healing properties.
posted by Dansaman at 11:27 PM on December 30, 2012
posted by Dansaman at 11:27 PM on December 30, 2012
Response by poster: I'm stunned that I didn't understand that all the expensive ointments that never made a difference had one effective application, and that was because they had the same properties as petroleum jelly. In a near-lifetime of dealing with topical meds (as well as many other types) for severe psoriasis, I had never realized it.
posted by goofyfoot at 1:37 AM on January 30, 2013
posted by goofyfoot at 1:37 AM on January 30, 2013
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If it were me, I would tell them, "The pain is so bad I've considered going to the ER to get something to relieve it short-term. I need help managing it." Hopefully that will indicate the severity of the pain you're in.
I feel for you and I hope you're feeling better soon. I don't have psoriasis, but I have lived my entire existence with eczema and seborrheic dermatitis and I know how frustrating treatment and relief can be. Anecdotally, my cousin with plaque psoriasis has had very good results with Humira- hopefully it'll help you as well.
Good luck and be well!
posted by rachaelfaith at 5:46 PM on December 26, 2012 [1 favorite]