I have been on Vicodin for about 6 years since being diagnosed. Early on it was there when Celebrex didn’t work but I developed stomach ulcers. After that the Vicodin was my pain Med. With the opioid crisis my state recently passed laws making it impossible for my dr. To write past do frequency. Now I’m screwed with poor pain control. My psa has never responded well to treatment. Any body else dealing with pain? What do you do.?
I’m working with a trainer and using exercise as much as possible.
Oh what a miserable situation to be in, Bern. What treatments have you tried to control your disease? What is your rheumatologist saying about your predicament?
I have been on methotrexate, enbrel,humira, Remacaide. The other punch… I have severe fibromyalgia since 1991 from a spinal cord injury. Same story there. I have been on all the Sri meds with tramadol but was advised to stay active, don’t worry the pain is generated in the brain push past it you can’t hurt yourself. I was very active, nurse, showed horses was in USAF reserve. It got worse I got switched to lyrica and Cymbalta. My dr. Switched The tramadol to Vicodin was fearful of possible interaction. When I was diagnosed with psa the rheumatologist told me that studies are linking fibromyalgia to a greater risk of getting the psa. I’m preparing a thouful discussion with my primary dr who orders the fibromyalgia and pain medicine. I also feel like beating my head against a brick wall.
Oh boy, I can just imagine. The biologics you mention are all anti-TNF agents, and there are some new meds on the market that are approved for PsA, and which work on a different inflammatory protein. Have you discussed that with your rheumatologist?
So many of us can relate to your frustration.
My doc rights me a script for 5 mg oxycodone. Right now I am getting past the PC opioid police. I don’t take more than necessary and I only take it to take the edge off when things are bad. I find I cannot concentrate at work if I am in a lot pain. The small amount of oxy just takes the edge off and doesn’t make me feel weird… Doc has offered to increase the dosage, but I told him I didn’t want to take that much.
I find ice the most helpful. When my legs and back are acting up I get the hot tub I bought myself shortly after I was diagnosed.
I try to walk when I can, but right now it is making things worse. I think there must be some point that the body can tolerate some excercise and it helps. I think there are other times the excercise is not a good idea.
Hmm, pain clinic maybe and take some 500 mg naproxen from primary dr. There is no substitute for me i just take hydrocodone 3 times a day just to get close to normal. The naproxen makes a difference with that combination. Some folks have stomach trouble with naproxen. 2 cents.
Thanks for the replies. I can relate to the work issues. I am a nurse and retired 3 years ago because of pain and concentration issues. I do ok with most exercise due to a very savvy trainer. If walking is trouble, pool walking and the arthritis classes most ymca have can help. I am using Tylenol for breakthrough pain right now. I can’t take any nsaids and that is a real problem because Motrin helps. My rheumatologist is pretty rigid with his protocols. He suggests I talk to primary about a switch to Tramadol. My freezer is stocked with ice packs and Icy Hot topical helps.
For me tramadol was not effective. When I went to the pain clinic and got hydrocodone it was the best for my pain and still is. There is something about tramadol that just can’t cut it. Having said that it is always good to eliminate other medications for pain before starting the tried and true opium solutions. Tramadol is synthetic and crafted.
I am on injectable methotrexate and celecoxib and my pain is currently not controlled. But, physical therapy has helped to reduce the pain. I also use myofascial massage (very slow stretching of the Saran Wrap layer of the body, i.e. the fascia) and Ai Chi in warm water (slow movement timed with the breath.) Medications help the most; my daily exercises have reduced the pain levels; and the other two give temporary respite.
That is my current issue, the pain. I’m not sure what level of pain is “normal” for PsA. I ache all over. My knees and shoulders hurt bad. I get these random stabbing pains in my calves, arms, hands, toes and fingers I often have low back problems and muscle spasms there. (I think some of the low back issues are from the prednisone.) I try and get off the prednisone and I begin aching and hurting all over.
Been on Enbrel since November; I can walk better now, but I don’t like my (lack of) quality of life.
Doc writes me a script for 5 mg oxycodone twice a day, but that just takes the edge off, which is all I want. I don’t want to go to anything stronger. Can’t tolerate NSAIDS, too much and my heart acts up. Several people in pain management say I need to go to time released oxycontin, but with the opioid police now, not sure I want to got that route.
My wife asked about my pain recently. I told her that as soon as I wake up in the moring and open my eyes, I feel something hurting. Some days every step I take causes pain someplace. I don’t consider my pain debilitaing, just hugely annoying and troubling. I guess I average about a 7 during the day, but by the time I get home after work I am up to a 8 or 9. I hate taking the pain meds, but I am finding I have to take on first thing in the morning inorder to be able to think and work, then take another as soon as I get home. I have a desk job except for about 10 week sof trazvela year, which is becoming harder and harder.
Ice and hot tub helps, but only temporarily. I often get in my hot tub about 7:00 PM so I can get some relief for a few hours and go to sleep.
The Enbrel has helped the terrible fatigue and the severe stiffness and pain in my hips, but I am now concerned as to how much better it gets, or if it gets better. I get depressed thinking this is the way the rest of my life will be. I just turned 60, but feel 110.
I have the option of going on disability, but feel that will make things worse if I just sit around. I am just becoming very burned out on all the pain. I have been in back and neck pain since 2004 after someone rammed my truck. I think this is what brought on the PsA eventually.
Just keeping my fingers crossed and praying a lot.
I hear you on retiring - might not be the best course of action if you are still engaged in your work and enjoying it.
Can you go part-time? Consulting? I did (at only 40), but it has made all the difference for me, and I finally feel like I might be able to tread a more sustainable work path (without giving up all the things I love about it - including a roof over my head!).
If you are having that much pain and can’t do things you should tell your Dr you may need a different Med than Embrel. I have to start going to a pain clinic for my Vicodin due to new regulations. The government is forcing all other drs. To stop writing opioid scripts. When I do well I am taking Vicodin twice a day, play golf occasionally, trail ride. Sometimes I need an extra pill. Right now I’m having a lot of pain because my Remacaide stopped working. I switch to Symponi in 2 weeks. I also had my Vicodin cut until I get to the pain clinic. Just starting there. It’s diffi. My primary dr. Just told me there will always be some pain. Would have been good to know that 6 years ago.
Sorry about the pain. Pain is just so tricky. I was diagnosed in 2016 and was acute on/off for 3 years prior to that. I had a decent run with Enbrel until last month when it failed. I’ve added MTX and am waiting to see if things get better. It’s bad now but even with treatment I’ve never been pain free. I always have sacroiliac pain and have finger and wrist problems in the winter. The Enbrel for some time controlled the full body aching for the most part and lessened the localized pains. I have some Chinese 701 plasters from Solstice Medicine that give me topical relief (but they smell bad). A heating pad helps sometimes. I wish physical therapy and acupuncture were more helpful than they are. It maybe takes a level 7 pain down to a 3 but just temporarily. My stomach doesn’t tolerate pain killers well so I’m just powering through it. Hope you find some relief.
I’ve had psoriasis since I was a child but only recently diagnosed with severe PsA. I have just taken the 5th loading dose of Cosyntex & was given Gabapentin for pain. It does nothing except make me loopy. I’ve noticed that since starting Coxyntex everything that hurts is magnified. Places I was previously only mildly aware of (for example lower back) are agonizing now. My skin looks better but I was at least functioning somewhat beforehand. I have regular dry needling therapy, regular massages, I swim, stretch and use a foam roller to release some of the joint pain and muscle tension. I’m at the point of using a cane but am afraid that once I do that I’ve turned a corner that I’m not sure I can come back from.
Just FYI – I work in a national pharmacy (home delivery and prescription benefit manager) – There are no “regulations” that stop any doctor from prescribing narcotics. There has been recent uptraining and updated best practices but there isn’t anything to stop your doctor from prescribing pain meds other than your doctor not wanting to do it.
My pharmacy mails out 90 day supplies of all narcotics to all states but NY, CT, and I believe WA, they limit controlled meds to 30 day supplies but even so, there is no state that stops doctors from prescribing.
azurelle