Hydrocone kerfuffle

General
1

Hello everybody, I have not been posting since forever because you don't have much of a life working in a hospital and once I am home, it is crash and burn time. PSA has been going up and down, as usual. The quarterly steroids injections help some. I kicked Humera to the curb, it never worked for me and I am now injecting Enbrel weekly along a low dose of mtx. It seems it is doing something for me, I am not falring up so badly. I only had a lung infection lately and I nipped it in the bud with methylprednisone and a Z-Pak.

I had some issues with shoulders and cervicals, as well my perennial back and knees but so far, so good, although exercise is out of the question :( My chief complaint is extreme fatigue, but I get up at 5:00, go to work in a hospital, I run all they long all over the hospital (3.1 miles today according to my app), I drive back 30-45 minutes home or run errands, I make it home around 6 pm and then it is pay bills, make dinner, etc. and try to hit bed not later than 10 pm, so, no wonder. Lately I am not sleeping well, I woke up 2 or 3 times every night with charleyhorses in my lower legs and feet, front and back, up and down. I have them for a couple of months, they disappear for a couple more and then back again. I have not figure it out yet :(

My painkillers were Reprexain, a combo of hydrocone with Ibuprofen and they were working really well, I was able to cut down the dose to 1 or 2 pills a day combined with plain ibuprofen during the day and Benadryl at night. Now they have become type II and the pharmacy rejected my script. Rheumy does not want to prescribe them anymore and she put me in Tylenol with Codeine #4. Not only it makes me uncomfortable to take Tylenol with mtx and Enbrel but they don't work for (insert expletive here) . Also, even taking them with a lot of water, they leave a bitter aftertaste and a chalky, heavy sensation in my throat and esophagus. Yucky yuck. Incidentally, I had to get the pills from a mail order pharmacy, CVS in Corpus Christi was out of #4 and #3 and as usual, not a clue of when were they going to get them.

I would like to hear your experiences and see if anybody else is taking this type of Tylenol and if it works.

Namaste and have a good weekend!

2

Thanks Sybil. Yup , lots going on and with a body that does not help, I could not do it without analgesics. They don't take all the pain away but enough to allow me to move. I am a full time interpreter in a pediatric hospital and I would not quit my job for anything, I love it.

I am sorry you have to go through charley horses too :( Last night I had a charley horse on my right leg, front muscle of the calf that sent me scrambling. They are so bad that the muscles feel bruised the next day. What puzzles me is that they appear for a couple of months and then they disappear only to come back again. I wish I knew what triggers or stops them. Life is the same, food is the same, I do not make big changes every 2 months :(

I will see my rheumy in a couple of weeks and we are going to have a long conversation. I do not discard to go to a Pain management specialist to get Reprexain, it works so well! The hydrocone dose is very low and I only take 2, max 3 pills a day, I keep a tight watch to avoid addiction, which I know is a real danger :(

3

Did you try pushing against your heel while pointing your toes back towards you? Idk how to describe this maneuver, but it works for me and my husband whenever we have Charlie horses. But, I can't say that I've ever had a real big problem with them. Just occasionally, so maybe that maneuver wouldn't work for serious, frequent ones.

4

Hello

For quite sometime I was on Hydrocodone w/Tylenol. I took all of the biologicals as well as MTX. I have liver panels as well as other tests done every three months. Never once have I had a problem. After some time my pain management doctor put me one oxycodone w/tylenol then oxycodone with no tylenol. Still no problem.

Everyone is different but I think the important thing is to get your blood tests done regularly. The amount of tylenol you take is usually minimal I am thinking the side effects and risks of the other medication I take out weighs the tylenol. Again I am NOT a medical professional and this is just my experience over the years.

My advice is to find a pain management doctor probably an anesthesiologist. Most doctors do not want to take the time or deal with DEA regulations so they will not prescribe pain meds. (Again my opinion as well my experience)

I really hope you get some relief. I have not been able to work for many years now but I still hold out hope I will return to the work force some day!

5

Surferette--I get plenty of toe and foot cramps. I now make sure that I have practically no bed covers on my feet because the weight of them pushes on my toes and seems to make the cramps more frequent.

Also, I had been having horrible pain in my feet and legs and would wake up and not be able to go back to sleep because of the shooting pains. The pain meds did nothing for it. I talked to my rheumy about it and we discussed the onset, location and type of pain and decided that I had some neuropathy in my toes. No surprise there as they are almost always swollen. He prescribed me gabapentin which I have taken now for three months. I now sleep through the night (it makes you a little drowsy after you take it which helps!) and don't experience the shooting pains. I also haven't had any cramping in my legs since then--not at night anyway. There's my 2 cents!!

6

The reason most docs are not prescribing long term pain meds is because PsA is one of a number of disease that Alodynia is a feature of. Simply put, long term use of pain meds increases pain levels.An interesting stat is that 85% of folks who have entered pain rehab are drug free and close to 90% have returned to work.

That being said I am at home recieving IVs for fluids and steroids, have a PCA unit, and may yet have to insert a feeding tube, if we can't get this mess calmed down. At this point the surgical options don't impress me. So yeah there are times we need a hand.

7

What you say is very true of course however at some point for some people pain medication helps tremendously. Personally I was getting close to suicidal because of the constant pain. Over the years I have taken myself off of pain meds though my understanding is that the receptors in my brain perhaps may be permanently altered. Not sure enough research has been done.

I am sorry to hear about your dilemma. I really hope it gets calmed very soon.

8

There is no doubt of that. The question now is who should be prescribing it. The typical doc has very little training:

http://depts.washington.edu/anesth/education/clerkships/pain.shtml

Professional associations are the ones making the biggest changes NOT the DEA.

9

WOW I did not know that. I asked my doctor why all this urine testing and strict medication prescription was going on and she said the DEA. I wondered how that could be possible so this is good to know.

10

Heres a pretty good document: http://www.lanepowell.com/wp-content/uploads/2011/06/OpioidRuleComments1.pdf

The rules have been codified meaning made into law but they were determined by the professional associations. In my state (montana) for example they can't prescribe above 80 for longer than 7 days. My guess is the 120 will be phased down over the next few years. In a lot of areas Practice Committees within a hospital or physicians group have additional requirements.