I've had back/hip pain for over a decade, it was only once a year until the past year or so. I was told over 20 years ago when I was diagnosed with psoriasis that if I developed arthritis symptoms it would most likely be PsA. It still took my doctors 6 months to give me the diagnosis, that was in Jan. of this year. My pain has been mostly in my right hip and right sacroiliac joint, with sporadic pain in the left hip, shoulders, left wrist, and recently the top of my spine at the skull. I am on Methotrexate (8 pills/week) and Diclafonic(1/day) for 4 months, and Enbrel(twice a week) for 6 weeks. I have tried Gabapetin which didn't do much and only high doses of Prednisone had any affect. I have been out on short term disability since mid Jan as the pain was so severe by the end of the day I could hardly get up the stairs when I got home. My mother had RA for 30 years, so I have a decent background in autoimmune diseases and the medications used. I have experienced a lot of frustration with both the disease and the doctors. I have always been very capable of taking care of myself and raising 4 children, now I need help opening a pill bottle. It is my hope that I can learn more about the medications used, how to figure out how to work, if and when I should consider disability (because I can't even function in my home at this point), should I move out of New England to a warmer climate, and just get the emotional support to accept this as what my life is now (VERY hard for me). I am so thankful for this forum, and hope I can contribute to help others as well.
Hi there and welcome. I am fairly newly diagnosed too (Oct 2013) The guys here have been a great help. Let me recommend a book that the guys on this forum recommended to me - (available in kindle edition) called "Psoriatic Arthritis: The Facts". It covers so much detail and helps you understand what you are dealing with. I found it a great basis for being able to talk with my Rheumy and clearly understand what he was suggesting. You have found a great group for asking questions and just having a rant if that is what you need.
Wishing you low pain sailing :)
Sorry for the LATE welcome, but we welcome you all the same.
This is a great group for support and, just as important, education, so I am really glad that you were able to find us.
I can definitely sympathize with where you are right now. I have been there myself and it wasn't so long ago that I don't still see it in the rear view mirror. For me, the key was the right medication management. It's grst that you are already on a biologic. Give Enbrel the old college try, and if it doesn't work to relieve enough symptoms, don't be afraid to move on to the next one. You deserve to be able to live your life with as little pain as possible, and the best way to achieve that is through medication, movement, and determination.
Thankfully, very few of us PsA-ers need long term disability. Most are able to continue working, in some manner, until retirement. You may need to modify what you are doing to meet your new needs, but you should be able to continue with your life. That said, I am thankful for the time that I had on short term disability to do all of my appointments with my PCP, Rheum, pain doc, and PT. It sounds like you are taking the long route to recovery just like I did, not the most fun, but some of us just take longer to get the right management.
There is HOPE. I am still working. Full time, now, at a job that I love that accommodates my physical needs a little better.I am on the right meds (FINALLY) and I am beginning to get my life back. It has been a very hard fight and there have been days that it has been so hard to make myself get out of bed and live, but we did it. I hope that a year or so from now, you are looking at all of this struggle in the rear view mirror too.
Welcome!
Thank you for the encouraging words GrumpyCat, they are much needed at this point. I realized there have been quite a few other medications my pcp tried before I was diagnosed, many of which did nothing or gave me intolerable side effects. I will continue to take the current meds to give them a real "college try". The most effective med I use at this time is the Diclofenac, a once a day pill that lasts for 10 - 12 hours at best, but at least I can get a little bit done in the morning. My pcp, rhuemy, and the affiliated hospital are anti-narcotic, period, I was prescribed Percocet early on because I wasn't getting a full night's sleep due to the pain, but that was by another provider that apparently "broke ranks". What got me was it did take the edge off my pain and I was able to sleep, when I asked my pcp for more to get me through until one of the other meds started to work she said no. When asked if she was more concerned about my becoming addicted to them than she was about my pain, she said she was. My rhuemy is also steadfast about not prescribing them. He also stated that they would end up causing me more pain. My question is, how effective do narcotics seem to be with PsA pain in general. And should I be looking for new Drs? I'm not getting the sense that they are all that compassionate, and I really have to dig to get good information. It just is really disappointing as I work at this hospital and up until I became personally involved in treatment there, I thought it was one of the best in the country, now I'm not so sure.
As for my job and disability, I started working there last spring in a job that kept me active and worked well with my ADHD, I always had a bunch of different things to do, and the group of people I worked with were fantastic! Unfortunately moving beds and equipment, frequent squatting, mopping, and not sitting down for an entire shift (other than breaks) made it impossible to continue, and I guess I don't see how I would be able to do that again. When I start thinking about what I will be able to do I realize I can't sit for mere than 45 min, I can't stand in 1 spot for more than 20 min even with shifting my weight, and it took 2 months for my wrist to get back to close to normal, so repetitious activities are out. Put ADHD on top of it and I'm frustrated. :(
I am keeping hope, the alternative wouldn't work. Luckily my family and friends are very helpful and supportive. I also hope that in a year I am looking at all this in the rear view mirror and find my way.
Narcotics are extraordinarily ineffective for PsA (and arthritis in general) pretty much the standard of care NOW excludes their use except in a few cases where the permanent damage is so extreme that it can not be surgically repaired. Those patients are usually referred to "pain Management" It is estimated that these are less than 1% of a practices patients. Opioid-induced hyperalgesia or opioid-induced abnormal pain sensitivity, also called paradoxical hyperalgesia is a phenomenon associated with the long term use of pain medications. It is becoming all too common. Some people can recover but many can not. In extreme cases just a gentle touch will send a person through the ceiling.
Disability without a work evaluation by your local vocational rehab unless you are a professional over age 50 just isn't going to happen. There are exceptions of course. This is a really tough time I understand, many of us have been there, it does pass.
In the meantime you might want to ask your doc about the addition of a tricyclic (amitrptyline is the most common) Low doses usually starting at 25mg (way less than the therepeutic dose for clinical depression) gives many of us the sleep we are missing and helps reset you pain managment centers (which are in part, a part of your immunue system)
If you have had relief from Diclo, there is a lot to hope for. It means your pain is caused by inflammation. That can be controlled eventually. Its not like there is a magic cure out there that the docs don't know about. Its approximately last I figured out about 16,000 combinations. Not that they have to try that many we get as much help fro "failures as" successes getting to the right combo.
Thank you tntlamb, that is the info I was looking for. I am at that point of pain that I will try anything and everything to notch the pain down to a tolerable level, but I don't want to cause myself more problems in the process. After reading about so many different meds that I've never heard of I'm going to work on a list of what I have tried and what reaction if any I got from them. I'm trying to remember if I've tried amitrptyline or not yet. I've tried a couple of meds used for fybro and have had some severe reactions. The narcotics, which I couldn't take years ago because of the reactions, now make me a little spacy, but it's minimal and does take the pain down a little.
I am 52. I haven't done any voc rehab yet, still hoping I can get back to "normal". Or at least figure out what my new normal will be. It's scary wondering how I'll support myself.
I get some relief from the diclo, my rheumy put me on that because I had been taking 2,400 to 3,200 mg ibuprofen nearly every day for nearly 2 years and it wasn't cutting it anymore. Not to mention the risk I was taking with my GI tract. I sure hope I don't have to go through nearly that many combinations to find "my" success. lol.
Really glad I have this network to talk things through with. Thank you.