Follow up on dilaudid and that new creme

Hi all....

I am now about one week into taking dilaudid everyday. Initially I was taking 2mg three times per day but that afternoon dose was causing too much fatigue. I now take 2mg in the am and then in the pm. This i went over with the rheumatologist who was in agreement. He suggested I take Vicodin during the day for breakthrough pain. His opinion is that a low dose regimen of narcotics is safer than a high dose of steroids. How bout that? I have not been able to get to this low of a dose of steroids for 5 years. I am now on 7.5mg a day. I was on 10mg per day. If it works out, he wants me to try and get to 5mg per day.

ALSO--the creme that the pain doc prescribed that really does work for muscle pain in from a company TRANSDERMAL THERAPEUTICS 877-■■■■■■■■. It is a compound formulation that has the following ingredients:


(sedative/muscle relaxer/muscle relaxer/antiinflammatory/nerve pain med/antibiotic)

Do not know why there is an antibiotic but i have heard some antibiotics have anti-inflammatory properties. You rub the crm into the painful areas 3-4 times per day. the tube is 90 grams so i use it twice per day because if not then i would use the whole tube in less than 30 days and they only pay for one tube per month.

Hi Kit,

I am so very glad to hear that you have found your magic potion for pain! Yipee! I too am very surprised for them to choose pain meds over steroids, but they would always be my preference!

I am most interested in the rub! I think you told us everything but the name, unless I am having one of my 'thick' moments! Sounds ideal!

Part of my problem of taking narcotics as maintence is taking Phenergan before, it really wipes me out, but I throw up the narcotic without it, so I understand about 'too much fatigue'! I'd like to try that in a patch, if they make it!

Anyway, so glad to hear of your success!

Big hugs,


Oh thank you so much for this info! You betcha that I'll be asking my doctor about the cream. And maybe the dilaudid too tho that scares me.

How are you doing with the pain, Fibrokitty? Are these items helping? You said the creme does. Oh dear, I'm starting to think I'd rub a turnip on my back and other spots if I thought it'd help, so thanks again for this much appreciated advice.

Hope like heck you're doing better. That's the goal! Good luck, sweetie!

Well, isn't it the Lamb who always says that narcotics are better and safer than steroids? OR maybe I'm misremembering it. Dunno. Too much fatigue to figure it out.

Hey Susie...

The rub has no name. It is ordered by all the compounds it contains. I know, it is a long name.

Have you heard of Fentanyl? It is a narcotic pain patch. why do u have to take Phenergan before a narcotic? There are other meds for nausea.

Big Hugs


Hi Petunia...

I think the point is that steroids, long term, have sooo many bad side affects compared with a low dose narcotic.

Hi Pet....I know you suffer greatly. I wish things were better for you. I am lucky that the dilaudid and creme seem to be helping. The other thing is that I do go swimming every other day and that helps.

Take Care


Will all of them make me tired?

This doesn't sound like a meds by mail type cream, but the hometown pharmacy instead?

He's the other way around, but he can take steroids, use tens, tolerate pain management injections... If he couldn't it may be a different story!

Hey Sun...

We did discuss the patch. I am not a big patch person. I find that because it lasts 72 hours (as per the drug company, although I know plenty of people who it works for only 48 hours) it is hard to adjust dosages right away. Plus the inconsistentcies with how long one patch lasts gives me pause.

Hey Sue..No it is a mail order pharmacy that I believe does only compound products.

I have heard one of the guys on the PsA site talk about his Dr prescribing a similar cream that the hometown pharmacy will compound. If I find it, I'll let you know what it is, I have so much info from 3 sited running around my head, I 'spin' after a while, but I believe the main ingredient is diclofenac, and he gets it at a super strength.

BTW, do all drugs for nausea, like Phenergan, have the same SE of tiredness?

I would like to know the name of the cream , is it a prescription ? Sounds like it would be,
My dr. Insists narcotics do not help fibro patients, but I bet if she lived with this agony for one day she would change her mind

You bet, Dee, they have to really FEEL the pain to understand it! That is why I got to the point of only going to female ob/gyn Doctors, though I got a surprise when there last week with a UTI when my Doc made me strip off my clothes for a pap smear, had I known I was in for that, I would have gone to his wife, she is his partner and I go to her for that! HA! Thought I was past being embarrassed, but guess not, but good I did, had yeast infection to boot! But compared to most things, that was nothing! He said with taking Enbrel, he had to make sure!

I did ask Kit for a name of the cream, said it has no name, just ingredients, so copy those down, she also explains exactly what kind of med each one is below. Sounds great, doesn't it? I think that Pharmacy is about to do a much better business! I know I want a truck load of it! LOL!

Maria, here is the cream that tntlamb's Doctor prescribes and his hometown pharmacy makes for him, he warns that most grocery or dept store pharmacies will not do compounds.

Dicloflonec 5%, DMSO 5%, Lidocaine 5% in Lipoderm.

He had told us that there is a premade prescription cream with either 1 or 2 percent Dicloflonec, but insists that the additional Dicloflonec makes a substantial difference.

I told him what yours contained, just like me, he was surprized about the Ketomine, says they use it out there in Montana as a bear tranquilizer! Also surprised about the Tetracycline, so I sent him this.

You two would have much to talk about, he was a University of Montana Professor, and like you is brilliant, I have learned so much from him!

Actually, they all have some not so nice side effects and if Phenergan works and only causes tiredness (not that tiredness is a benign side effect), I would stick with that. SOme other drugs cause movement disorders, muscle pains, fevers....

Hey Kit,

Yes, it had been a belief for years that certain antibiotics have anti inflammatory properties. Actually, I found more info on ketamine

However, the most important use of custom-compounded ketamine cream is the reduction of hyperalgesia (an exaggerated sensation after a painful stimulus), the reduction of allodynia (a painful sensation elicited by a nonpainful stimulus), and as a tolerance-protective agent.4-12

SK, I would see about trying the 12.5 mcgh patch first. Or maybe even the 25mcgh. It doesn’t make me tired at all. I don’t get loopy on it either. If you do get it try putting it on your hip/buttcheek. Right about where the pocket on your jeansfor example I put mine where my back jeans pocket is but up a little bit and to the right. If stop off at walgreens and grab some nexcare tagaderm patches and have one handy just in case you have problems with it sticking. Before you put it on take a little bit of wet baking soda and rub it on the spot where you’ll be putting the patch. Let it dry and knock it off. Then put your patch on. It helps put a little barrier between you and the patch glue. Make sure you hold the patch on for 30-60 seconds and whalah! Then if you have problems with it staying on use the tagaderm patch.

Oh also make sure you write on the box in the little lines they provide to write what time and day you put it on.

Anyways, I hope that you can find something else that is more effective for you than what your taking now. It’s always such a pain in the butt when you have to take more medication for something that’s gojgn to make you feel better.