Hi! I am 47 and was diagnosed with an autoimmune disease in November and specifically with PsA in January. I had a steroid shot in October and started on 7.5 mg Meloxicam. When I finally got in to see a rheumy in January, he put me on folic acid and 15 mg Methotrexate weekly. When I went back on March 23rd my Mtx was increased to 20 mg weekly and my Meloxicam added back at 15 mg daily and of course continuing the daily folic acid.
I made an appt for April 7th because I was in a full flare, my first one. Every joint in my body hurt. My rheumy prescribed Enbrel and I got two shots, a steroid and I can’t remember what the other one was and it isn’t listed in my online file. My Enbrel was just approved by insurance yesterday, so I haven’t had my first shot yet.
My dilemma is this: should I start taking Enbrel even though I feel better right now? My ankles are still swollen (that was my first symptom–Achilles tendonitis and plantar fasciitis combined) and my rights hip, right wrist, and shoulders still hurt, too. Truth is, everything still hurts easily if I overdo anything, so I am careful. And of course I am still tired and foggy-brained. Point is can deal with my current symptoms. Should I save Enbrel for when I can’t deal?
Enbrel could make you feel altogether different and way less achy. I think the Methotrexate and the other shots and stuff you got probably helped a lot and you feel somewhat better, but maybe with Enbrel you could feel even better yet.
I was actually afraid of Methotrexate and all the other usual meds most people take before getting on a biologic. My rheumy just could not talk me into going on anything for years (I had a couple prednisone tapers, which made me feel on top of the world good) and took occasional OTC pain meds, but nothing consistently. Finally, it just got overwhelming. My rheumy and dermy wanted me to go on a biologic. I found this support group and they convinced me to go ahead with it. So I did, and Enbrel is the only thing I take. It works really well--there's been back pain and foot pain, but the major symptoms of PsA are almost entirely gone. I'd say 80% improvement of psoriasis and PsA! I don't have any SEs, my blood tests are normal and I've been on Enbrel since last July. Just wanted to tell you how well it has worked for me.
Enbrel is a biologic, and is not used on an as needed basis. It will be used weekly to slow disease progression. Over the course of the first few months, you will likely see a decrease in symptoms, hopefully including the fatigue and brain fog. I realize that you are temporarily feeling better, but Enbrel and other biologics are used for the long term. The goal is to minimize joint damage, and even if you're not feeling absolutely horrid, damage can be occurring.
If your doctor prescribed Enbrel, then clearly you are in need of it. It is NOT a med that you will go on and off of, but you will need to take it weekly and be monitored by your doctor. You will need to contact your doctor about delaying your weekly injection if you are sick or have signs of an infection. Then you will be told whether to delay an injection or not, and for how long.
I started Enbrel as my first biologic over a year ago. I have seen what untreated (and undiagnosed) PsA can do to a person, and I never want to go through that. Even with proper treatment damage can occur, but it will occur without being treated.
There is lots of great information available here, including the guide for newbies. I also wrote up my own personal story in that section. You'll get lots of great support here. Welcome!
Thanks Grandma J and Stoney! I have been trying to educate myself both on this site and reading books and online materials. I think I just need reassurance to jump in and do this. I want to get off the Meloxicam–it is hard on my stomach and doesn’t seem to help at all.
This site is an incredible resource! I love you guys!
There are other NSAIDs out there… Try a different one. If you still have stomach problems, ask about an acid reducer. While MTX and acid reducers don’t mix, many Rheumotologist will simply monitor it.
Hi there Zinnia, there are two approaches to this disease: symptom control (which is your meloxicam, other anti-inflammatories and pain relief) and disease control (which is methotrexate, other DMARDS and biologics such as Enbrel).
Treatments which work almost exclusively on the symptoms, when they are effective, might make us 'feel' better in the short term and possibly lull us in to a false sense of security. This is because 'behind the scenes' the PsA is still doing its worst! Disease control treatment is just that - preventing or slowing progression of the disease and the damage it causes.
Biologics are the gold standard of PsA treatment. Like all medications they come with risks, only you can ultimately decide whether to take a medication after consulting with your doctors and gathering all the information you need in order to be comfortable with your decision.
One thing that informs my decision making process on treatments is to remind myself that once permanent damage is done to my joints it is just that, permanent. I'll be left chasing any and all surgery, joint replacements and pain relief just to try and get through the rest of my life. I find that an incredibly sobering thought.
Even on a biologic it's not always plain sailing but generally the waters are a lot less choppy ... says she sitting up at 3:18am because of hip pain :)
PS. I love your name ... why not find a photo of a zinnia flower and upload it as your profile pic?
Thanks Jules! It is so important to get advice from people who have been there and understand the condition better than I do. I do plan to upload a zinnia pic as my profile pic, btw
Just yesterday I received a catalogue from one of the flower nurseries I like and they are selling zinnia plug plants and including a lovely lime green colour ... maybe I'll treat myself ... once I've checked my husband will be up for the planting in a sunny border spot somewhere .... or I could do pots. Ideas, ideas, ideas! Wonder if there would be enough interest on the site to set up a 'gardening/garden/plant lovers' group? Hmmmmm .......
Hi Zinnia, I think you have the answeres you need - so I’m just adding a short snippet of my story because it’s a bit different. Like Stoney, I saw what untreated PsA could do. In Australia, where I live, the medical system is very different, and it is very hard to get a biologic of any sort - after an enormous amount of research, and MTX (and a few other dmards) making almost no difference, I begged my rheumatologist for Enbrel, and paid full out of pocket for it myself for a while until he was willing to line up the paperwork. For me, it was the best decision I’ve made in terms of my treatment, and I’m grateful every day for the disease control I get from the biologics (now humira for me).
What you said about how difficult it is to get on a biologic in Australia, Jen, is that a problem with socialized medicine? I was so in favor of the public option here in America and "Medicare" for everyone, but more and more I'm rethinking that! We pay big time for our private insurance, i.e., high deductibles, etc., but it didn't seem difficult for my doctor to get Enbrel approved. She didn't even take any photos of my psoriasis. She did provide my insurance company details about m PsA though. But my daughter is a nurse in that dermy's clinic and she told me people with a lot less psoriasis than me and no PsA readily get approved for biologics.
I can't even remember how yucky I felt before starting Enbrel last July-- all I know is I felt so sick!!!!! If insurance stopped paying for it now, I'd definitely figure out a way to pay out-of-pocket!!!!
Seenie,
I have been on Enbrel since the end of April. It has worked wonderfully for me! Took me out my first real flare and made my life almost like before PsA. Great all summer long. No real side effects either. I even begged my rheumy to take me off methotrexate and lower my meloxicam. I was never able too get off the mxt because school started and the stress of my job made it impossible. I called my rheumy to see if I should continue taking four mtx tabs every weekend or up it again, but it is hard to get them to call back in a timely manner and never when I am available so I just continued with four 2.5 tabs and the 7.5 meloxicam. Now I am seeing more joints involved every day and overall pain, fatigue, brain fog, and sleepless nights increasing. I go back to my rheumy in less than a month, so I will figure it out then, I guess. There has been a big staff changeover at my rheumy and not for the better. But I like him and he has done a great job so far.
Great news, Zinnia, that you’ve had a good esponse to Enbrel. The other meds you can (with your rheumie’s guidance) tinker with, but the fact that you got significant relief without side effects from the E is wonderful. Gives you hope, doesn’t it? And it gives the rest of us hope as well.
Thanks for popping in and keep us posted on what happens, Zinnia. Good luck dealing with the new “team”. Frustrating for sure!
Yeah!! Another posative bio story! I love hearing how well people can regain life when the right med mix is achieved. Sou ds like your almost there and have had a great go with Enbrel, congratulations! Daily life, especially with kids, can be stressful to balance even in full health kudos to you for continuing to work at getting the right balance before things are harder to turn around. Thank you for coming back and letting us know how your doing!
