prescription pain meds

[WG mom]

Is there any medical reason why prescription pain meds cannot be used when taking Weg meds? For instance, hydrocodone with prednisone and rituxan?

[Donna-from-Philly]

I am a patient with a pain clinic and the doctors recommend OxyContin and oxycodone. In fact my doctors have said not to take Advil, Tylenol or Aspirin because of the side effects. My one doctor often complains that those meds with the least side effects are used the least because of bad publicity. I have very small doses so I can take only what I need. My doctor also always says it takes twice as much to get rid of pain than what it takes to keep it away. In other words don't wait until you are in pain. Take a constant dose at regular intervals and you can be mostly pain free.

[WG mom]

Thank you Donna. I have shared this with my daughter. I think she needs to have a discussion with her doc about this.

[Rose]

When I was first reducing pred and got below 20mgs I awoke in the early morning one night and walked the floor for the rest of the night with pain in my sinuses. My face was aching, my teeth were aching. I was climbing the walls. I contacted the ENT as soon as his rooms opened in the morning and he prescribed Lyrcra. It did nothing. Actually tried lots of pain meds and nothing helped (not the opiates) The last resort was to increase the pred back up to 60mgs. I was not happy about this as I had put on so much weight but at that point I did not care, The pain just had to go....and go it did within an few hours. What a relief that was. I stayed on the 60mgs for a few days and then started to reduce. I reduced much quicker this time than I did before as the shorter time you are on the high dose the quicker you can reduce. So I was back to my 20mgs within about 10 days and then continued with the slow reduction. 6 years have passed since then and I have never experienced that intense sinus pain again.

Rose

[Donna-from-Philly]

I agree after awhile you know your pain and there are times when nothing works better than a quick dose of high prednisone and then come back down. It's like sometimes you need to go up hill so you can go farther down hill. I am "blessed" with all kinds of pain from all kinds of issues. Nerve pain from prednisone induced diabetes and from a radical surgery. Migraines from Lymes disease and having to have radiation in my brain, WG pain that includes joints, face sinuses. A bad knee from a motorcycle accident from my mid-spent youth etc. I kept a pain journal and studied my pain. I try to figure out what helps and what doesn't. I have found that regularly moving and then resting in a different position helps. Sleeping in a recliner if my sinuses are killing me. Getting enough sleep. Eating healthy and drinking enough water. Stretching and massages and hot baths help for a short while. Laughter really helps, doing something for someone else (I knit and donate the items). Stress, worry, feeling sicker and being depressed or anxious makes pain worse. Good luck in finding what works.

[Jaha]

WG Mom,
I am currently taking pain meds Oxycontin and oxycodone, it is prescribed to me by my PCP. In addition to Wegs, I have Fibromyalgia, Costchondritis in my ribs, COPD, neuropathy in hands and feet. Then there is the nerve damage from the shingles in my breast and back that lasted for over 10months. I'm on 15mg of Preds, always trying to taper, when I get to 10 I have a flare and have to up it which is destroying my shoulder joints and my knees. I have been on all the immune suppressant so far and am currently on 2000mg per day of Cellcept, Bactrium and Rtx infusions every six month. I think it is safe to say that if your daughter is in pain her PCP should be able to give her something and it may be just temporary that she would have to take them. Best wishes to your daughter to live a better pain free life.

[vdub]

I can't take NSAIDs like Ibuprofen. I'm not sure why, but its an interaction with one of my other drugs.

However, I do have a whole host of other pain drugs that I pick and chose from as needed. My normal routine is 100mg 3x day gabapentin and 100mg 3x day of tramadol. However, I also have hydrocodone and oxy. I hardly ever take the oxy, but I swap out the tramadol for hydro maybe once ever 2 weeks. It depends on how much pain I have. Tramadol and the gabapentin usually keep me relatively pain free.

[WG mom]

Thanks for all your responses and good wishes. My daughter's doc has said he is reluctant to prescribe a narcotic pain med to younger patients (she is 25). From the reports of many, I believe it would help. She does not have an addictive personality and she is a highly responsible young women. Think we shall press the issue. It's one thing to tough out pain when there is no other option; it's another when there may be a solution.

[Wegetarian]

Was told I shouldn't use Ibuprofen due to kidney involvement, and pretty much the only other over-the-counter med avaible is parcetamol which does nothing for me. So the doc prescribed me some pills with codein (a fairly mild opiate I guess). I think I've only needed to take one, as I'm lucky to not be in any pain - but its nice to have them in case I have a nasty head ache or something.

[Bek Stone]

I am currently on durogesic patches and endone (with food when needed because if I take it without food it makes me sick) as I have difficulty with pain meds because im allergic to morphine and codine. When my migranes have been extremely bad my mother was giving me prescribed pethidine needles (shes a nurse so its all ok) which seemed to help but the specialist suggested deximethidine needles (im not quite sure if that's spelt right) but its a kind of steroid and it seems to work a whole lot faster and better but thats for last case scenarios to keep me out of hospital and I haven't had to have one since December last year so im on a good streak at the moment. Just thought I'd mention it incase anyone elsr has issues with pain medication like me. And as I'm sure most of you on here with WG I have a very very high pain tolerancy so when I need these needles its really bad. Hope this is useful to anyone else but obviously id talk to your specialist first.

[keegan55]

anything with Tylenol bad for the kidneys anti-inflammatories are also bad for the kidneys that is why my pain management doctor gave me oxy I tried to take it only when I really need it like to sleep

[spiritscript]

Hi Jaha! :)

What is Costchondritis? I'm asking because I see you have a few of the same diagnoses (COPD, Neuropathy) as me. Also, it's in your ribs so I was wondering if you have any T disk problems?

Thanks! :)


WG Mom,
I am currently taking pain meds Oxycontin and oxycodone, it is prescribed to me by my PCP. In addition to Wegs, I have Fibromyalgia, in Costchondritis my ribs, COPD, neuropathy in hands and feet. Then there is the nerve damage from the shingles in my breast and back that lasted for over 10months. I'm on 15mg of Preds, always trying to taper, when I get to 10 I have a flare and have to up it which is destroying my shoulder joints and my knees. I have been on all the immune suppressant so far and am currently on 2000mg per day of Cellcept, Bactrium and Rtx infusions every six month. I think it is safe to say that if your daughter is in pain her PCP should be able to give her something and it may be just temporary that she would have to take them. Best wishes to your daughter to live a better pain free life.

[Jaha]

Costochondritis is inflammation of the tissue and nerves, in my case between the ribs. It is also called Tieze syndrome and I think I might have spelled both of them incorrect. I was told that it sometimes takes along time to calm down and can flare from time to time. I do have degeneration in my thoracic disks going on. I had an open lung biopsy almost 5 years ago and have had shingles on that side from front back. So who really knows where the pain is coming from, I'm going to see a neurologist later this month maybe they will tell me something totally different.

[LisaMac]

I also had costocondritis about 12 years before I was dx'd with Wegener's. So weird to think I may have had symptoms for years. I'm so sorry to hear you have that, it really hurt.

[spiritscript]

Wow! I haven't been here since February!
Costochondritis is inflammation of the tissue and nerves, in my case between the ribs. It is also called Tieze syndrome and I think I might have spelled both of them incorrect. I was told that it sometimes takes along time to calm down and can flare from time to time. I do have degeneration in my thoracic disks going on. I had an open lung biopsy almost 5 years ago and have had shingles on that side from front back. So who really knows where the pain is coming from, I'm going to see a neurologist later this month maybe they will tell me something totally different.

[Green Grass & High Tides]

If wegeners is involved then a long term pain management strategy ought to be created with a good medical team. What works this year may not be appropriate in 5 or 10 years. My general practitioner, although she means well, could easily prescribe counter-productive meds. It takes a team that you feel is competent.
Charting daily weg symptoms, pain level 1-10, and dates gives a lot of info for the team to go on.

At 25 if bedridden and in excruciating pain I would take oxycodone minimally even though it makes me nauseated. Percocet and vicadin have things in them that make me worse. Dilaudid was the only thing that worked when severe spine and nerve damage occured, but only two doses one night in er then the pred took over and a little oxycodone got me through a few days. I have a whole bunch of it if I need it but almost never take it unless it's excruciating and can't sleep. Level 8-10 pain should probably be treated. Seems cruel for a doc to withhold help at that stage.

Addictive personality or not, if taking narcotics pain meds preventively for more than a few weeks then the body will develop tolerance and undergo withdrawal if discontinued abruptly. Call it "dependent" if not addiction. But it takes a slow taper to stop those stronger meds. Caution.

Anxiety is often related to severe pain. So sometimes adding a safer anxiolytic can reduce the amount of pain medication needed to control pain.

I write down every single pill I take and the time and always ask myself "Do I really need this?"

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[txrepub4God]

I am a pain management patient that is 100% supportive of people taking pain medications when they have legitimate medical reasons to take them. I have degenerative disk disease in my low back and neck, with my back being the absolute worst. I have needed spinal fusion surgery for a couple of years now, and when I finally decided to take the plunge and get it done (because the pain is so horrid), they find Wegeners and none of my specialists will medically clear me for the surgery until I am done with the treatment for Wegs in a year or two. So, my only comfort is my pain meds. I have been taking some form of pain med for the past 10 years now, so I've gone through a lot of different kinds. Right now I take MS Contin ER 45mg twice a day (morphine extended release), Dilaudid 2 mg every 4 hours, and Zanaflex muscle relaxer 4 mg every 6 hours. I have tried fentanyl patches in the past, but the "night" sweats I get from Cytoxan and prednisone caused me to sweat those patches right off. I've had hydrocodone (no longer works), oxycontin (really doesn't work, either), and I guess my next steps are an increase in morphine, a pain pump, or pain shots.

I think people that have abused prescription pain meds have honestly ruined it for the rest of us that are using the meds as directed and as intended. No, pain meds do not control 100% of my pain and I've never expected them to. I have accepted that most days, my pain level from 1-10 will be around a 4 and that is something I live with. I also understand that I am watched like a hawk by my pain management physician, they count my pills every month to make sure I'm taking them, they check my pee, heck, even the Drug Enforcement Administration watches every prescription I fill and sends my primary care doctor a letter several times a year so he knows I'm getting pain meds. I think it is a JOKE the way the government watches me as if I've broken some major drug laws - and I'm the one that has never been arrested in my life! But if this is what I have to go through to get a little bit of pain relief each day, then so be it.

Teri

[Birdie]

I have tried fentanyl patches in the past, but the "night" sweats I get from Cytoxan and prednisone caused me to sweat those patches right off.

I wrapped the patches with that sticky elastic gauze tape to hold em on.