It has been a while and I am running out of rope

General
1

I guess it has been a year or more since I have been here. I have had PSA since 2013, and my rheumy has said I will not be one of the people the meds work that well for. I am not on RInvoq, after most of all the others. They do something, but not much. My doctors made me go into pain management a few years ago because of the toll the pain was taking on my body. I have been more or less coasting since then.

Since last winter, I have been dealing with PSA attacking my low back… really sidelining me. They ablated L4 and L5 a month or so ago, even after they told me it was not a hardware problem in my spine, but the Nero said it could help with the pain. It did a little. But now that the low back pain is not killing me, I know it is the hip IT bands that are producing all the pain. I can sort it out now.

My doctors have thrown their hands up, though. My rheumy is out of ideas. My neuro is now sure what to do. My pain management doc wants me to do PT! Pain management people do not understand PSA. I have been teaching them for over a year.

I am now 68 and feel like my life is over. I have struggled to keep my head up and not look at it like that, but with the back and IT bands in serious pain and inflammation for the last 6 months, I can do very little, and I have lots I have been putting off.

Just wondering if or how anyone else that is in a similar situation is dealing with it? In my state, even in pain management, the amount of pain meds is highly restricted. But, if they gave me enough to help, it would have to knock me out. It has pushed my DRD depression to the forefront now, even though it has been controlled for nearly 10 years. My psy doc became concerned last year because I had gotten in a bad place. He finally talked me into E-ketamine treatments. Those are interesting and helping me keep my head above water.

After beating the depression for ten years, I now feel like a failure. It is not that bad, but it has me feeling like I have little to look forward to other than pain now. I just do not hear of people with PSA in full-body pain like I am. The amount of inflammation in my hips and the IT bands makes me hurt all over in my bones now.

Anyone else dealing with extreme full-body involvement that has suggestions?

2

What does that even mean, that meds won’t work well for you? That sounds like a cop out. Are you able to see the second opinion? Pain management, all it does is manage the pain, it does nothing to slow down the course of the disease

3

Over 10 years, I have tried Otezzla, Cosyntex, Embrel, Taltz, Tremfya, Simpnoni, RInvoq, they all only did a marginal reduction.

4

It took over 2 years to get a PsA diagnosis, then one more before any real relief. This site saved me from sinking quite as low as you sound, but I truly know what it is like to have multiple sites in the body hurting to the point of incapacitation, with doctors either not understanding the disease or offering interventions that worked poorly, inconsistently, or stopped working.

I have no suggestions, other than second opinions from new doctors. My current rheumatologist is excellent.

I’m so sorry you are having such a bad time. I know it’s also hard to spur yourself on to find new treatments when your mental health is not good. Please keep trying. I was pretty sure my life was all but over from age 59-62. I’m 71 now, and I’m coping. I hope you will be, too, sooner rather then later.

5

So sorry you’re having such a hard time! I agree that if you can get a second opinion from another rheumy it may help sort things out.

Since PsA affects more than just joints it’s not at all unusual to have ligament, tendon and enthesis issues. I’ve had more problems with all of the above than with my joints. Pain management is good but if not in conjunction with something that can help address the source of the pain then you won’t reap the full benefits possible. The trick with PT is finding a therapist who understands and works with PsA. I know they are out there because I have a friend who is a PT who understands the disease and has had PsA patients. Including me. IT band issues are awful (I speak from experience) but the right therapist can help. It will not be pleasant and will take time but it will help. Don’t give up or just not pursue PT. Life can still worth living. Pain, especially chronic pain, is a cruel taskmaster and it’s not easy to escape its unrelenting clutches. And sometimes the best that can or will happen is dialing it down to bearable levels. But getting relief in the long run is worth the effort. Don’t give up. Life can still be good, my friend.

6

My rheumy has been good, I hate to seek out another one. He has never made me stay on a biologic more than a year if it was not performing as we wanted. But he thinks that biologics are not going to be the cure I want. He said some people only get limited results.

I may search for someone else. Right now, I have such inflammation at the IT band attachment points in my hips that I can barely bend over. My neuro shot one hip up with roids. That only helped for about a week, and now it is back. Daily roids have been a problem with me and the side effects. I get teh dreaded low back pain from them, so they are counterproductive.

My psychiatrist is keeping tabs on the down mood. I have suffered from treatment-resistant depression for 30 years, but it is well controlled now thanks to a vagal nerve simulator implanted 12 years ago. The constant pain would get anyone down. It is not as much being down as the frustration with only treating symptoms. Medically, I am not sure which direction to turn. I got the PSA diagnosis almost immediately the first time I saw my rheumatologist. He came highly recommended. I am not sure teh problem is him or the meds. We both are waiting for a couple of new ones to make it to market.

My pain levels in my low back and hips has been off the charts for the last year. My neuro had the nerves at L4 and L5 burned out. He said my spine was not pinching them, but it would help reduce the overall pain. It did help with the low back, but it was a treatment for symptoms again. This IT band inflammation is terrible. I am going to post a separate thread to see if anyone has dealt with that before.

Any suggestions, please give them!

7

I’m the same. I’m on rinvoq now after trying six to eight others with no relief or with bad reactions. I don’t think the rinvoq helps much, if at all, with the pain but I do feel like the fatigue is improved a little bit and it’s better than nothing so I stay on it.

We need to attack pain from different directions and if rinvoq really isn’t helping, they need to focus on your other meds, like psych meds, nerve pain meds, Etc.

I’m sorry you’re having such a hard time! Try to stay as active as you can and fight the pain and negative thoughts.