Hi All,I was fairly active on this site trying to find all kinds of information that might help my daughter who was diagnosed with PsA at 20. I have not been on this site for a long while because I just felt like nothing mattered anyway. She is largely depressed all the time, cannot hold down a job, her jaw hurts all the time. It keeps her awake at night just trying to find a position to place the pillow. She was on methotrexate, but lost her hair and is now on plaquenol. She finds solace from vicodin and that's about it. I think she is afraid of taking Enembrel or others as she watches her grandfather struggle with with Non-Hodgkins Lymphoma and in/out of surgery chemo and radiation. He was diagnosed with Rheumatoid Arthritis in his 50's and his doctor hit it hard with something that started with an "r".......he took that for 10-15 years and then his body began falling apart. I am not quite sure what to tell my daughter or how to help. Please pray for a great counselor and her rheumy's good decisions about medications. How do you encourage someone to face what they have when all they want to do is escape it? Wow, nothing has hurt me more than watching this. I wish it was me instead.
Karen. When I was 21 I was diagnosed with a chronic pain. Condition fortunately I didn’t fall into a depression. I almost went the other way. I wasent going to take the diagnosis lying down. I did a crap load of physio/Ot and took a crap load of drugs. And I went on with life. It was a hard couple of years but it went on. Depression it a hard thing to manage and deal with. And sometimes I thi k it is harder for family members to watch. I don’t think I have ever been that way. But my husband suffer depression. And it has been very hard on me and our family. My suggestions is try to get you daughter some counselling. It is very hard to find the motivation. To cha ge when you are exhausted and in pain all the time. And it is really hard for others to understand that feeling. Just be there to love your daughter. I’m pretty new to the PsA world but from what I understand and what I hope remission is possible. I’ve been there befor ( previously mentioned pain condition) I’m hopeing with the right meds I will be pain free again
Part of the depression that comes with PsA in the early 20's is that everyone around your daughter is starting their lives... and now she is stuck and at the mercy of others for help to even function.
She needs a new rheumatologist if she is still in that much pain and not getting proper treatment. Also physical therapy, antidepressants, and a therapist who works with people with chronic pain / chronic disease.
With proper treatment, this will pass. It may be a tough few years though.
Finding something that she is good at where she can contribute and feel needed will give her a sense of purpose again. Having that will give a reason to continue on. Even though she has this condition does not mean that she cannot contribute to society in some way. Because even if you fix the pain issue, if she still feels some what physically or mentally defeated by the disease she will still be depressed. Having an outlet to contribute with the gifts she has will give her hope.
Having a child with both PsA and depression must be heartbreaking. It's vitally important that she treat both. The depression can make the PsA worse, especially the pain and fatigue.
Deciding to take a biologic is a huge decision. I did everything I could to avoid it, but chose quality of life when my PsA got so bad it put me in a wheelchair at age 36, just months after my diagnosis. It has been life-changing for me.
I cannot tell you how much your replies have meant to me. Thank you - as always - for your advice, well spoken. We have made an appt with another doctor tomorrow (the one that first diagnosed her).....she has been through four rheumy's between SF and here in Oregon in the last two years. I am hopeful that the information from her regular physician will make sense to the rheumy and together they make best decisions for Lauren. Counseling is a must, but you are right - she has a hard time finding that motivation. I am hopeful that she will make right choices, but it is difficult at this age. I think that Marietta is right when talking about being at the age where everyone else is moving forward with their hopes and dreams and hers are on hold for a while. I think that pain is the driving force behind everything, including the depression. When you feel like crap, you feel like crap. I get that. Let's hope there is an upswing from here.
Hi Karen...... Glad you came back. I'm saying this with my Dad/Grandpa smile and a lot of experience. How about YOU get some counseling too? There are counselors and support groups for people in your position. Parenting a child (even an adult child) with health problems can be HARDER on you than the disease is on her. Trust me on this I've been (am now) there. I'm sure she is in pain. I'm sure she feels bad about where she is in life. I'm sure you feel every bit of it. There is fine line between enabling and helping are you clear where that line is??? Is she??? One of the things that motivates us (adults) is responsibility, its pretty easy when helping an adult child to remove that motivation. Failure is an option for"kids" you don't work you don't eat sort of thing
I don't know your daughters situation but I seriously would question why if she is not actively involved in PT, working with her doc's etc why she is being given vicodin. I will say this without hesitation, if she is as depressed as you believe her to be and she is being given vicodin (a major depressive drug) without a contract that includes aggressive treatment of her disease, mental health work, and behavioral marks, there is some serious deficiencies in her care plan. This can only end badly.
I'm only suggesting you get some help and support to process all of this to best help her. You can get some ideas here, but thats about it.
One immediate suggestion would be your local Vocational rehab for her. They can help her do everything necessary to prepare for work. including some good counseling, job training, even housing. She may need to train for the long term. Most 20 something with this disease go into a period (sometimes years long) of remission. The problem is those depending on drugs (legal or otherwise) usually miss it. They use the medication to treat their problems not their disease. She needs a clear line of seperation between them.
You need that line too or this thing can consume you. Your statement "I just felt like nothing mattered anyway" scares the hell out of me. I wish I could help you directly. There is a wonderful life for both you and your daughter, I know it to be true.
The "nothing mattered" came from the doctors and myself doing many things and Lauren not responding - not going to PT - quitting the counseling - not taking the meds correctly - etc. Lauren deals with a long list of issues, but I feel that this disease that is at the heart of everything. We will talk to the doctor about that tomorrow. That "ending badly" is what her father and I see now. We have pulled some "tough love" strategies and are waiting to see what that brings. I did receive counseling at the onset of her PsA, but will talk to Lauren's rheumy concerning someone who is adept with my position in her care. I could sure use the support. No one else, but people on this site, seem to really "know" the depth of this disease.
I don't have any great answers, just sympathy for you and your daughter. My kids are about that same age, and it can be tough. They're adults in many ways, but when the rug is pulled from under them, they're definitely kids again. Others have made excellent suggestions. The sun will shine again for you and for her, but it will take time and work. Lamb is right about the Vicodin, too- it's NOT her friend.
I always try to educate myself before we head off to the doctor's office. I came across this video that it quite lengthy, but VERY informative and shot straight from the hip of a leading PsA doctor. It is fairly recent.
Thank you for sharing! Really informative and gives me a greater understanding
Karen said:
I always try to educate myself before we head off to the doctor’s office. I came across this video that it quite lengthy, but VERY informative and shot straight from the hip of a leading PsA doctor. It is fairly recent.
I can't imagine the pain it causes you to see your daughter is such pain. I had some experience with an ill child as well. My son has ulcerative colitis and we went through a really tough time. He had to miss most of school one year. Luckily he's in university and that is less of an issue as long as the exams and assignments are done.
My son was able to improve his condition himself by doing his own research, not that easy with PsA.
I wish I could offer more. Someone here posted a link recently. You may find it helpful. I really hope things get better.
Thanks for the link - I will check it out. Today at the doctor's office was helpful. The doctor is doing some research on Lauren's symptoms - she seems to present somewhere between PsA and RA. Jaw pain is not usually associated with PsA, but it is with RA. The treatment for her jaw can go in a couple of directions depending on the images. She will stay on the current meds since they are working on her fingers and arms. Hopefully, the new direction she will take to alleviate the jaw pain will also help with her spinal pain. She lives somewhere on the pain scale of about a 4 - and when she flares, it goes up from there. She cannot sleep, is grouchy most of the time and always on the verge of tears. The prozac made her drop too much weight (only weighs 107).......so we shall see how the doctors handle that one. Geeze. We live at the pharmacy these days.
We shall see what this new week brings. Hopefully, some new direction.
Karen, you weren’t sure how to title this. I’m not sure I can express how very sorry I am to hear that your daughter is suffering this at her young age. The consequences of her disease, its impact on her career and her social life, the pain it inflicts on her every day must be overwhelming for her and for you. That is enough to make anybody really depressed, but there is also the distinct possibility that the disease process itself could be deepening her depression. If you google “tnf-alpha depression” you will find lots of information. Here’s a good summary I found at http://www.skincarephysicians.com/psoriasisnet/depression_studies.htm
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What triggers psoriasis may trigger depression
Feelings may not be the only culprit. In recent years, researchers have discovered that people who have psoriasis or psoriatic arthritis produce too much of a substance called TNF-alpha. Excess TNF-alpha in the body can lead to skin cells growing too quickly. When this happens, psoriasis develops. Excess TNF-alpha also can damage joint tissue and lead to psoriatic arthritis.
Studies are finding that excess TNF-alpha also is associated with depression. In clinical trials, researchers found that patients with psoriasis who saw results when taking medication that blocks TNF-alpha not only had clearer skin. Blocking TNF-alpha also seemed to lift their depression.
The reason that depression lifts is not entirely clear. It could be that blocking the TNF-alpha alleviates the depression. Another possible explanation is that people feel optimistic because they have clearer skin. More studies are needed to find out why the depression lifts.
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While I do think that counselling support is important, I also think that you might consider the possibility that biologic treatment (as scary as it is) may provide her with considerable relief from her depression.
I was diagnosed two years ago (although, in hindsight, I have had PsA for many many years), and I’ve struggled with depression all of my adult life. As my PsA got worse, so did my depression (OK, and so did my physical pain and my limitations. And I know those things are all connected.). I started on Enbrel a few months ago, and the first effect that I got from it was a lifting of my depression and a feeling of having some energy again. This happened within a couple of weeks, and was totally unexpected for me. My skin has improved, and my physical pain is better than it was, but the biggest change for me has been in my mental health. I am now coping much better with life and this wretched disease than I have in at least a decade.
A biologic may help more than her joints. Have you discussed depression with the rheumatologist?
Good luck with everything you and your sweet daughter are coping with.
Seenie
PS Thank you for the link to the video of the PsA doctor. It is wonderful, and the doctor seems such a thoughtful and empathic man. I watched it yesterday and again today.
I am sorry that you have to watch your daughter go through this. I know I worry (cry) about my kids getting this disease every night. I wouldn’t wish this disease on anyone.
Honestly, I believe your daughter needs emotional and physical support from family and a professional. The endless cycle of depression is only going to make her condition worse.
While on MTX, did her arthritis improve? There was a study published in 2012 that suggest that MTX is not effective in treating PsA. Many people with PsA have RA mixed in. MTX has been proven to help with RA.
As far as the biologics go, they are still in their infancy. They will continue improve as the years go by. Both Enbrel and Humira have relatively safe short term data. The issues typically arise with pre existing conditions such as heart disease. Yes, they increase the rate of specific cancers, but people with PsA generally have a higher risk of developing cancer.
Thanks for the info - I agree about the counseling piece and am trying to move the mountain to Mohamed......the horse to water.......so is her primary care physician. The MTX made her hair fall out and did not help too well. I think the MRI on Monday will be telling. This may change her course of treatment. I just take it one day at a time at this point - but think about it 24/7.
Karen I’d like to again thank you for posting the video. I wrote down a ton of info and it allowed me to ask several important questions when I saw my doctor. I have two adult children and both fear arthritis after watching me during their younger years. Our son was showing signs of osteo in his feet when he was 16,he is now 19 and suffers with pain in his feet and back. Our daughter is currently fighting eczema. My only hope is that there is more known, better treatment and possibly a cure one day soon. I’m sending strength, health and love to your daughter and to you and your family. A strong,supportive family really helps! <3
Update after doctor's appts, just in case some of you are having similar situations. And by the way.....we heard that jaw pain is usually associated with RA and not PsA - that was something we learned in this process. The MRI showed that one of Lauren's jaw discs was dislocated (TMJ). It "could" have been that the ligament holding the disc was affected by the PsA, but it also could have been some trauma. I just think it is odd that it was always one of the initial symptoms with her PsA - but also the one that could never be controlled by the meds. So, now she has seen an oral surgeon and will start on a treatment plan. She will receive some kind of apparatus for her mouth to see if that relieves the pain. If not, then surgery becomes an option....where they will remove the joint completely (and not replace it). She has an 85% chance that either of these treatment options will eliminate the pain. We left the doctor's office and a big crocodile tear came down her cheek. "Mom, I am only 22". I cannot imagine being so young and trying to master the control of pain so that one can just get by. It is a bummer. Thanks for listening!
It's great to hear from you again, Karen! Thanks for the update.
I have jaw issues and have PsA, not RA, so it surprised me to learn that it's more associated with RA.
I have had PsA for most of my life, but didn't get diagnosed until a couple years ago (I'm 38). Your posts got me thinking back to when I was 21. I was living with chronic pain, had doctors who didn't believe me/ couldn't find anything wrong with me, and was struggling through life. I'm not sure if, at that point, I'd have been willing to jump through the hoops I've had to jump through since my diagnosis to get to the place I'm at now (doing relatively well most of the time). Your daughter has the advantage of having a diagnosis, treatment options, and a mother who is willing to do anything to help and encourage her to get well.
