When do you decide enough is enough? When is it time to make a switch or add additional medication? I've been on Enbrel since January 2015. Things were going well, very well, but now they have plateaued. The past month has been hard. It feels like I am regressing. The fatigue and pain is returning. The brain fog is slowly creeping in.
The pain is mostly in my knees and I am starting to wonder is something else is going on, not PsA. I know I have something wrong with my patella. There is a lot of popping, cracking, and the patella going side to side. My hubs wants me to see an orthopedist and I might. X-rays where unremarkable, maybe an MRI next? I fear going through rounds of scans and appointments only to find nothing. The pain has been very high the past few weeks. 7 or 8 on the sad faces scale. If I sit all day long the pain ranges around 3 to 4. By the end of the day I am so tired and exhausted I fall asleep at once.
I did a three week stop on my pain medications to see where my pain levels where. I also stopped the amatrip at night. I found by 12pm I need some sort of pain medication and by 5pm is was mandatory. Of course with stormy weather I was taking larger doses and using ice packs/ heating pads.
I would like to note I do a fair amount of exercise and keep moving. I homeschool my son, so we are busy but I do take time to relax and recover. Example activity one day, rest and recover the next.
That is such a difficult question. I thought I was there back last autumn because my knees were just getting worse and worse (although I only had minimal damage of small meniscal tears and mild patella tracking issues) but my rheumy increased my dose of Simponi and, admittedly slowly, I've just got better and better. But when we talked about my unchanged and intractable fatigue and sleep issues it got me the additional dx of fibro. That, though, is getting the big stick treatment as I find myofascial release massage, diet, hydro exercises and an increased dose of ami are making a big difference.
Have you had intra-articular steroid injections in your knees? I did and it didn't help at all (more than one type of steroid, though) but I wonder if this is worth you trying first. Because I pushed and pushed I had knee x-rays and MRI's and a review by a specialist knee orthopod but he was adamant that my pain was inflammatory and, as things now seem, he was right. Before my bio dose was tweaked I was busy trying to decide which mobility scooter I'd want to buy!
Sorry you are having to cope with those pain levels, that really just sucks this far down the treatment road. Whatever you do I hope you get some relief soon amielynn.
Thank you Jules. I have also thought about a wheelchair for around the house. It makes me sad. I haven't had any kind of shot into my knees. My next appointment with the rheumy is in September. I'm not sure I can go until then without some help. I have also thought about physical therapy. I don't know where to start. Sometimes this disease is very dark.
Per you diet, what changes did you make? Are you avoiding things?
My orthopedist didn't see the extent of my foot damage by looking at x-rays. It wasn't until he saw my MRI that he realized how bad the damage was. He was very sympathetic after that! An MRI will show the inflammation-I don't think an x-ray can do that.
For me, I always have pain in my feet--sometimes pretty bad. All I have to remember is how horrible I felt before I went on Enbrel. It's going on two years now. I was in a lot of pain and my psoriasis was way worse. I'm so grateful for Enbrel, even though I don't feel perfect I don't have much of the PsA pain anymore.
Amielyn, I feel like our timelines are similar. I started Enbrel the almost the same time you did, and I am also feeling like it isn’t working now for the pain and especially the fatigue. It worked so well for me until about two months ago. I am doing everything I can to be as healthy as possible like cutting sugar and white flour and working out most days (in my own modified, off-balance, and comical way!) yet I am exhausted and forced to nap by early afternoon. I too have awful sounding knees and increasing foot pain in addition to the lovely back pain that I wake up with in the morning.
I just had an appt with my rheumy and, after some discussion, we are going to try Cosentyx. I was reluctant to switch too soon, but with the exhaustion and pain, it just doesn’t seem like there is an option. I’m hopeful that the switching will go quickly through my insurance. I am tired of missing out!
Since dx with PsA I've gained at least 30lbs in weight so my primary diet changes had been aiming (and failing) at weight loss. Initially I tried the low fat Weight Watchers type diet but that just hasn't cut it for me. A physio friend of a friend who specialises in womens health had been talking with my friend who had mentioned her own menopausal weight issues and about my situation with PsA/fibro and she recommended that we both try a very low carb/low sugar diet. My diet was already full of fruit and veg but I have to say that in just a couple of weeks of cutting out refined carbs (white bread, pastry, pasta, rice), starchy veg like potatoes, processed food and quitting the 'low fat' versions of everything which contain added suger I have started to feel loads better and the weight is melting off.
Now I have to say this is EXACTLY what my dietician friend (who has moved so I don't get regular nagging) had been telling me to do when I first got diagnosed in 2012 because a Mediterranean type diet, with lots of healty fats such as olive oil and avocado and oily fish, is also anti-inflammatory. And I think for the first time ever my hunger is under control because I'm not getting wild blood-sugar swings nor am I having to deprive myself. Whilst it's still early days I just have a feeling that this is suiting my metabolism perfectly and I still get to eat a wide variety of delicious, flavoursome food ... and I have the energy to think about it, plan, shop and prepare which is where it had all gone so wrong with being limited by pain, fatigue etc etc.
But September is too long to wait if you're feeling this bad amielynn, can you bring your appointment forward?
Stoney, I am considering it. Our area, Houston, Texas, has many choices for healthcare and honestly I am overwhelmed with my options. I know I should just make an appointment and go, but I hate the whole "tell me about yourself and why you are here" portion of the interview. Sometimes I wish I could type it all out and drop it off before the appointment. That way it's over and done with. I did find a pool close to my house that has water aerobics but it's self lead.
Grandma, I am considering an MRI, if I can get a doctor to issue it. I might see an orthopedist but I saw one years and years ago who gave me the brush off. I see them as surgery doctors. If something is wrong they want to do surgery and that scares me.
Dragonfly, I'm sorry we are on the same path. It's a ride huh? I hope the Cosentyx works for you. I'll bring up medication at my next appointment.
Jules, Yes, I agree September is too long to wait. I'll see if I can up the appointment. I hope your diet goes well. I love eating Mediterranean style. Very yummy! We eat fish at least once a week. Lots of fruits and greens. But my weakness is bread.... yum!!
My rhuematologist has prescribed Enbrel. I have taken Remicade, Orencia, Humira, Stelara. Before the biologics I was ANA negative. Now I am positive. Is this likely from the biologics? I inject 25mg MTX weekly.
I know many of us have played "musical biologics" ( like musical chairs ).
Have any of you tried Enbrel after multiple other biologics?
mimiB, why don't you post your question as a new Discussion as I think you'll get more responses that way.
mimiB said:
My rhuematologist has prescribed Enbrel. I have taken Remicade, Orencia, Humira, Stelara. Before the biologics I was ANA negative. Now I am positive. Is this likely from the biologics? I inject 25mg MTX weekly.
I know many of us have played "musical biologics" ( like musical chairs ).
Have any of you tried Enbrel after multiple other biologics?
I know, amielynn, it's hard. And my saying that doesn't help, does it? In March of 2015 I wasn't feeling in top form. My rheumatologists (I was seeing a research team) said they thought I was having more disease activity. I thought that they were perhaps right. I was given the choice of changing biologics then or doing "wait and see". I waited, and when I returned in October, I knew it was time. Past time, anyway. I switched to Humira in November. Unfortunately, it was several months before it got traction. I'm fine now, but all in all I struggled for the better part of a year with "wait and see" and then a fairly long lead time before the new bio started really helping.
Were I to do it again, I would have made the decision to change sooner. I lost too much precious time because I wanted to be sure after the rheums said I was backsliding. Amielynn, go have a talk with your rheumatologist and have him do a joint count and an overall assessment. And if he thinks you're showing more disease activity, don't wait until you get worse. Your quality of life is important.
Seenie, Thank you. While I was typing the first post I was thinking of your story. I remember your previous post about switching. What you describe is where I am at, to wait and see or to switch. I have decided to see an orthopedist first and get a knee assessment and possible an MRI. Also talk about physical therapy. It would be great to be shown how do really do the stretches and weight training, I am a 100% visual person. I have a hard time with you tube videos and replicating the activity.
I will keep everyone updated as I figure out what to do.