Today was a 9 out of 10. My doctor took me off my remicaide because I had a bad reaction the last time I took it, so now I feel like I am in limbo. I have tried Enbrel, Humira, Sympony, and none of them worked. She now has me on the Methotrexate which makes me crazy the next day and added Sulfasalazine. I am freaking out a little because she also implied that I might have Fibromialgia on top of the PsA. The pain is paralyzing and I need help. I am on Prednisone and Naproxen and nothing seems to help. I have tried tens units, acupuncture, hot tubs, massages, chiropractors, and I just want some relief. Does anyone have any suggestions? I am trying to stay positive remembering that this is just temporary, but it gets difficult when my parents have to come up and help me do my own laundry and cleaning. Please, anything anyone can offer would be much appreciated. Thank you!
Hi Sara,
I am on Orencia. It is not yet approved for PsA but if you fail on enough anti-TNF bios you can usually get approved. It sounds like you meet the criteria. Orencia is going after the disease in a different way, it works on T cells. It may help and should be worth a try. Remicade is a mouse protein and some people have reactions, Orencia is humanized so the chance of an alergic reaction is slim.
I would also suggest seeing a pain specialist. They know all the tricks and adjustments that can be made with medications to lessen pain. My pain never goes away, but it is well managed often enough for me to enjoy some good days. I use Toradol for flares and break through pain. It really helps me break the pain cycle. For everyday pain I take Tramadol and Cymbalta.
You have choices, there are options. Hang in there and get some help. No one should live in pain like this, see a specialist for your pain or a doctor who is willing to address it.
Call your doctor and get an emergency appointment. Just my .02 cents.
Take car of yourself. I hope tomorrow is a better day.
Sara,
I’m sorry to hear that you are having such a rough time. It sounds like it may be time for a call to the Rheums emergency line. Let them know how you are feeling and see if there is anything they can do. There probably isn’t, but I always like to call my doc before I head to the emergency department. They can definitely give you a bolus of steroids, and IV pain meds that may help you survive the rest of the weekend.
There are other biologics coming through trials and your doc might try off label use of another. It also may be that, if you do have fibro, the other biologics actually were working. You were still having pain because of the fibromyalgia. There is a chance that you could revisit those drugs.
It is definitely time to seek pain management for yourself. Prednisone and ibuprofen don’t seem to be cutting it for you, but to get anything stronger you have to see a specialist. A good one will be able to create a multi-modal plan for you.
Keep your chin up. Let us know how you are doing, okay?
Your Doctor just sounds like she is being thorough Don't freak out on the Fibro thing (yet) It really is a possibility if you are not responding to the steroids that your problem is not all inflammatory.
If your profile pic is yours I'm guessing you are under or close to 30 - right??? many young people have a nasty flair early on that can last weeks or months and NOTHING seems to help. 10% go into near permanent remission, another 60% or so go into partial remission for years (20 or more) where the disease is easily managed and has minimal if any effect on "life"
The rest get through it an move on with treatment and again 90% do very well/. All said you have only a one in 500 chance of not getting better. IF you help. You may have fibro instead. Thats not bad news Its not good news no autoimmune disease is, but you will be better off than half of us with PsA are.
The thing I want you to take away is things will get better
At his point you need to trust your doctor she will do the best for you. She doesn't work for drug companies gets nothing from them, she works for you. If you can't trust her, find one you can
Be active. Its hard BUT every day of inactivity takes several to get back to where you were the day before.
Watch your diet eat healthy but above all keep active and watch your weight. Its really makes a differnce I know we have all heard it a thousand times but every pound puts 4 pounds of stress on our hips lower back and knees. Put another way if I took you into the back of my barn and told you to load 320 bales of hay on my truck you would shoot me. Yet moving that 24 tons of hay is the same as walking a mile with 10 extra pounds of weight. A day of inactivity BTW adds 3/4# on average if you eat your normal diet
All of our natural tendencies when we feel bad is to "nest" with PsA that is the exact wrong thing to do. Its almost impossible to get rid of the rust from inactive joints and shed the extra pounds. (BTW I'm overweight spend too much time in my recliner etc - I'm NOT a fitness nut)
Things will work it takes time and I know hearing that is like being six and waiting for Christmas, but did Christmas ever not come??
That's really interesting, the stats regarding young people. Thanks for sharing that. Not that it applies to me, but still.
My 2cents: definitely, go get something for pain now. Meanwhile, try to stick wi the MTX and sulphasalazene. It is a really good combination, along with anti-inflamatory and folic acid. But for times like these, you really need pain med added to get through it. Does the MTX make you nauseous? If so, take something for nausea. Do you take injection or oral? Hope you get in a better place soon.
Thank you everyone for your suggestions and encouragement. This flare-up, I think, was the push I needed to get a new Rheumatologist and go to a new pain clinic. I'm frantically making calls, but if anyone knows a great doc in the Phoenix area, please let me know!
I know everyone says that exercise is necessary with PsA, but I find that the more I move in a flare-up the worse it gets. If I push too hard one day and do too much, I am down for the count for the next two or three days. I am learning to listen to my body, and more often than not it tells me to rest. Fatigue is another issue for me because of insomnia.
This progression of my disease(s) feels a bit like a loss, but I know that there is just a new life waiting for me around the corner. It may not be one in which I can dance and play volleyball like I used to, but there are still so many things I can do that I love. I'm grateful for you all, and I plan on frequenting this support group more often now. THanks again!!
We use "exercise,) and then along comes a dancer the queens of exercise and pain and think we mean EXERCISE....... You should never hurt yourself, If you can workout great if not gentle repetitive motions with every part of your body (and I do mean every part) especially hips, pelvis. shoulders, and lower back (these are the one that cause the most trouble) but also hands and feet etc. if it moves, move it. If you don't move it, it will rust.
Our executive Director John is coming by here. I hope he will share some of his story and how he became a marathon runner. I don't mean to be sappy , but I have season tickets to the Ballet in Seattle (the opera too) about a 350 mile drive. Dance is in the heart, the most beautiful dancer is no better than I am without heart. Watching anyone dance with heart brings tears to my eyes. The only thing we don't want to have happen is this disease to take our heart. Don't know much about volleyball except I like the uniforms and when I played in the adult league the beer after.....
SaraBe,
Sorry you are having such a hard time. Also out there for you to try is Orencia, as Debbie said, Xeljanz, Cimzia, and some others. Arava is an alternative to MTX. I can tolerate Arava but do very poorly on MTX (oral or injectable).
Like others, see a pain specialist, be proactive with your doc.
I also get worse with exercise, even gentle warm pool exercise. I do push my body to move as much as possible every day, but not to the point I feel worse. I'm lucky in the sense that sitting in one position too long causes me to hurt, so I'm always moving around, getting up and down, etc. I think that has kept me more limber than if I felt better staying still. Every time something feels "wrong" I stretch it at that moment. Example: if I'm sitting in bed reading, and my hip starts hurting, I simply move into a hip opening yoga stretch (such as butterfly) and keep reading while I hold it. Low back pain? I throw myself down into child's pose...and keep reading. However, I do VERY poorly when I commit to 30 minutes of stretching / exercise by itself. My body just can't cope.
Thank you so much for these stats! Many, many years ago, in my 30's, I was diagnosed with chronic fatigue syndrome simply because there was no other clear diagnosis. For years, I have fought and said I didn't have that and your stats make me believe it even more. If way back then I was having symptoms of PsA with extreme fatigue but diagnosed with CFS because of lack of information, I am more and more convinced that my PsA started then and just took many years to finally be accurately diagnosed and treated. Helps that I finally found the right doctor!!!
tntlamb said:
Your Doctor just sounds like she is being thorough Don't freak out on the Fibro thing (yet) It really is a possibility if you are not responding to the steroids that your problem is not all inflammatory.
If your profile pic is yours I'm guessing you are under or close to 30 - right??? many young people have a nasty flair early on that can last weeks or months and NOTHING seems to help. 10% go into near permanent remission, another 60% or so go into partial remission for years (20 or more) where the disease is easily managed and has minimal if any effect on "life"
The rest get through it an move on with treatment and again 90% do very well/. All said you have only a one in 500 chance of not getting better. IF you help. You may have fibro instead. Thats not bad news Its not good news no autoimmune disease is, but you will be better off than half of us with PsA are.
The thing I want you to take away is things will get better
At his point you need to trust your doctor she will do the best for you. She doesn't work for drug companies gets nothing from them, she works for you. If you can't trust her, find one you can
Be active. Its hard BUT every day of inactivity takes several to get back to where you were the day before.
Watch your diet eat healthy but above all keep active and watch your weight. Its really makes a differnce I know we have all heard it a thousand times but every pound puts 4 pounds of stress on our hips lower back and knees. Put another way if I took you into the back of my barn and told you to load 320 bales of hay on my truck you would shoot me. Yet moving that 24 tons of hay is the same as walking a mile with 10 extra pounds of weight. A day of inactivity BTW adds 3/4# on average if you eat your normal diet
All of our natural tendencies when we feel bad is to "nest" with PsA that is the exact wrong thing to do. Its almost impossible to get rid of the rust from inactive joints and shed the extra pounds. (BTW I'm overweight spend too much time in my recliner etc - I'm NOT a fitness nut)
Things will work it takes time and I know hearing that is like being six and waiting for Christmas, but did Christmas ever not come??