For anyone who cares, or can relate to this musical chairs game of biologic drug experiments, I am waiting on a decision on my appeal to my insurance company for off lable use of Simponi Aria for treating the symptoms of my atypical PsA.
I say atypical because my third consultation with yet another dermatology provider said that my nail dystrophy , while significant, is not what she typically sees in psoriasis patients.... but I do not have a fungus.
I bared all to have her check me for inverse psoriasis and she said that my symptoms 'down there' are mild and not as "angry looking" as she typically sees, but she did prescribe a combo steriod/nystatin ointment and I definitely feel better after using it.
She said the rest of my skin "looks great" and that I do not have any other signs of psoriasis. She even suggested I get a second opinion with another rheumatlogist to see if I even have PsA....sigh.
All I know is that I have terrible enthesitis, bilateral hip bursitis, swollen painful ankles and achilles tendons, maddening pelvic girdle pain, a bone on bone knee, jacked up nails, and persistent dogging fatigue. I know that steroids are the only thing, so far,that makes me feel better. I have funked three biologics and now my insurance company has opposed me for the last 3 months and I am flaring on 10 mg of pred per day, 15 mg of MTX a week.
I am continuing to exercise on the recumbent bike for 30 minutes every other day. While I can't say it has really helped my pain, I do feel stronger and have more stamina and will continue to do it if at all possible.
If my insurance rejects my appeal to try Simponi Aria, my next two choices are Stelara or Apremilast.
Ss to hear..stay strong. Do not let it beat you. Exercise every day if you are able. You will get stronger day by day. I have a recumbent bike and another stationary one with the fan..I found both of them at the same time.. Only paid $60 for both.. Good luck with the biologics.. I at least understand the waiting game with the insurance company.. I just don't understand why one person is fine on one biologic, and another isn't..
Mimi, what an absolute bummer. But I don’t see what more you can do except for what you are already doing, except for perhaps getting a second opinion from another rheumatologist
You’ve worked so hard at being well, and I’m sorry you aren’t getting there as fast as you’d like.
More “playing princess” is my prescription for now. Surely the wedding pics are done and you can bask in tat pleasure!
Thanks, you guys. I really like my current rheum doc, I trust him. He has followed me over the course of the last 2-3 years and He says my symptoms most match PsA, especially as far as the enthesitis and general presentation. He says it could be RA, but that he is convinced that it is an inflammatory arthritis and that I need to be treated. it was so hard to find a good rheum doc that would actually listen to me and take me seriously. I just don't think I could commit doc adultery at this point.
I like the playing princess idea. I just need to get my focus off of the confusion and be a patient patient.
Well, Mimi, when you described your symptoms, I thought “sure sounds like PsA to me!”. (But what do I know, I’m no rheumatologist.) So if you like him and trust him and he listens to you, I wouldn’t think of changing either. Doc adultery … LOL! You can still make me laugh.
I do think you need to be kind to yourself. Very kind. You deserve it.
Mimi, the "doc adultery" comment made me giggle, too.
If your rheumy believes it is inflammatory arthritis and is willing to treat it aggressively, that's the most important. While most of do want to know exactly what it is, my experience is that docs seem very reluctant to absolutely put a definitive label on it. The good news, of course, is that there's huge overlap in the treatments for RA and PsA, especially if you don't have major skin problems.
As far as the "which biologic next?" question, doesn't somebody around here have the crystal ball or tarot cards that will answer that one? Don't know what your first three were, but odd are that two of them were Enbrel & Humira. If the third was also a TNF blocker, something in a different family would make sense to me.
You know what? I'm glad to hear you're being treated appropriately even if they won't swear to what type of inflammatory arthritis it is. In some ways, it's not critical. I hope that you can get some relief soon.
In terms of the psoriasis, you definitely have it, so it should be considered in determining diagnosis. I barely have any, but it was part of the diagnostic process.
I would vote for Stelara next as it is helping me more than the others have. I am not sure knowing which inflammatory arthritis you have is too important as treatment is the same with a lot of them and no one knows for sure which one will work for any one person.
They use to use prednisone to diagnosis inflammatory arthritis. If you feel better on it than you have one. My psoriasis is really hard to see when it is not flaring. Good luck on what ever you choose we are here for you.
If you live in the US, for a second opinion, you don’t need switch rheumatologist. You can simply make another appointment with a rheumatologist that is outside the office of the one you are currently seeing.
It’s important to figured out what type arthritis you have. For example, Orencia hasn’t shown much efficacy treating ankylosing spondylitis. I think that’s it’s probably in your best interest to figure out what is causing your problems. In the end, it might just mean your incapable with the tnfs, you wouldn’t be the only one.
Well, I just got my second denial for Simponi Aria today !The letter states that it isn't medically necessary because I have psoriatic arthritis and not rheumatoid arthritis and it is not indicated for PsA. I could appeal again, but I don't think I will.
I know there is overlap for some of the drugs regarding FDA approval for both RA and PsA and maybe even AS. But according to my insurance company, they are not going to pay if it is not FDA approved, even with what my doctor deems as medically necessary. I am pissed. I am going to have a glass of wine, even though tomorrow is methotrexate day.
Thanks for all of your comments and suggestions ! I know there is an injectable Simponi that is FDA approved for PsA. Wonder why the infusion one isn't???
It's all such a crap shoot. I guess I still have a few FDA approved options left, but they are dwindling.
Stoney, I have not been officially diagnosed with psoriasis....the dermatology provider said my nails are 50-50% that it is psoriasis.....maddening. Which 50 percent is it, already ????
Sorry for the rant. Where's the wine for my whiiiiine ?
Mimi, how awful to have your insurance trump your doctor. Arrrrghghghghg. I will have a glass of wine for you tonight, even though it’s that day tomorrow for me too.
Thanks, Seenie ! I enjoyed mine, did you ? I have a battle plan in mind. I hope to get another shot of kenalog in my knee which seems to help everything systemically for a couple of weeks. That might tide me over till I see my rheum doc to see if I can try the injectable Simponi. Or something.....thank goodness for wine.
Still waiting for Stelara ! I hope it is approved soon and I can start it. My toes ache so bad....this is a fairly new thing for me. In the past it has only been my ankles, achilles, tops and lateral areas of my feet. I am mean when my feet hurt.
I did get a shot in my knee, but it still hurts a little. Not like last time when it completely stopped hurting. I wonder what these last three or four months has done to me, not being on a biologic. Hopefully nothing else will "melt" until I get some medicine. Oy, and the fatigue.....
My grandkids are here and I want to be able to be wild and crazy with them.
Isn't it odd the way something starts hurting that has never hurt before? Mine is my left elbow. Never an ache or pain before though my right elbow kills me. My right even locks after cracking and popping like crazy. Now my left hurts and has a marble in it. My Rheuy thinks it is a swelling on a tendon. Humphhhh. It hurts.
I am wishing you energy, no pain and patience in equal portions. Enjoy those grand kids mimiB!
Thanks, Michael ! I have a question about those "marbles"...I do get little, *exquisitely* sore little lumps or nodules along tendons and muscles that feel about the size of a marble. I have done some reading about trigger points and referred pain, etc, but I just am not sure if I "get" what they are....exactly. What do you think they are ? What helps you ? When I massage them, it hurts and feels good at the same time....kind of like what I remember cutting a tooth is like even that's been MANY moons ago !
They are inflammation. Just as inflammation where it inserts on the bone which has a funny name I can't remember, enthesis or something like that. Salonpas works really well on them. Heat and ice or even alternating them helps to. But like everything with PsA the right combination of meds works best; some fine balance of NASID, DMARD and Bios, which is different for each of us. If you look at trigger points in Fibromyalgia the correspond with where enthesis (?) appears in PsA so there is a lot of overlap I am not sure it is in our best interest to add diagnoses to our charts when it may be the PsA after all.
U will really laugh…my Rheumatologist drew circles on mine…it was on my pointer finger I laughed immediately because I thought they looked like boobs. Lol. after we were both done laughing he explained to me that they were bone spurs I must have them everywhere cuz my bones burn all the time…
I need a little bit more insight as to how much they will progress.
I am on Enbrel and have been since late 2012…
Thanks
Karen
mataribot said:
You are correct with the enthesitis Michael. I call those bumps golf balls. My rheumatologist looks at me like i am crazy when I say that.