followup: along with the pain i feel and the sometimes-visible swelling, i know i'm losing a lot of range of motion. when driving i cannot turn my head as far to the left as i used to when changing lanes. i noticed this last week when driving my hubby's car which has a different blind spot than mine that i *used* to be able to check successfully. i also have trouble cupping my hands together, like when washing my face. or cupping my hand to accept a pill or something that my husband wants to pour into my hand. it's like i can't turn it at the wrist to keep whatever is being put in my hand from pouring back out. if that makes sense. ugh.

Hey steph,
I was wondering where you've been. Since its primarily on one side & your low back as well as the DIP joints do you have any funky rashes or are your fingernails looking strange? It sounds like a lot of symptoms of psoriatic arthritis. Are you seropositive or negative? I'm positive but they say its impossible for me to have it. But since my low back pain has gone into high gear since Humira failed now they're considering PsA. It's rare in seropositive cases, only about 9%, but I have all the symptoms now too including tendons being affected and sausage toes/dactylitis. I'm waiting on my myelogram results to find out what's happening. PsA affects the DIP joints & SI joints and it's usually more one sided rather than symmetrical. My nails are looking very strange & the rashes started the last few months ago. Alto is the resident PsA expert but it sounds like a possibility for you too. My SI joints have bothered me forever & I've been told its impossible more times than I can count. But the Humira was definitely helping my low back for a reason. The treatments are the same for both but at least you'll have some answers.

As for testing, now I just tell my rheumy what I want. I just got tired of feeling the damage progress while being ignored. She blew me off for a long time with the "impossibles" and "couldn't be's" but I told her I wanted an mri of my hips at my last appt & she ordered it. Next week I'm asking for an mri or ultrasound of my feet to see the damage from the swelling & also of my shoulders because they've been ignored for over a year now. I can barely wash my hair theyve gotten so bad. Xrays won't show damage until its permanent & they don't show inflammation. MRIs are the best because they show soft tissues & bony structures and give the whole picture. If its in an easy to reach area & you have a good practitioner then ultrasound is good for inflammation. I guess it comes down to how many areas you want imaged & what insurance will pay for.

I hope I'm making sense. I haven't slept(because of wonderful pain) & I'm a lot loopy right now. I'm sure others will jump in with their thoughts. I'm sorry if I'm all over the map this morning.

Take care,
Emerald

Since you said your dr does listen-just not acts...Just explain that your pain etc is still continueing with the treatment plan they have been using so it is time to please try something else

emerald: um, hmm. originally my rheumy was considering PsA until i told her about my family history of RA (maternal side: aunt, uncle, cousin all with mod-sev RA). ultrasound with doppler imaging and vectra test confirmed it for her (i scored like a 51 or something). i am seronegative. i do not have psoriasis, nor does anyone in my family have confirmed psoriasis. i sometimes get weird dry patches in between my toes or on the side of a finger; i assumed it was, you know, dry skin. but they're a little rougher and more like concentrated than 'regular' dry skin. and you mentioned nails - my toenails on my big toe have been looking off-colored the last couple of weeks, and my feet/toes have been getting very cold - i attributed it to that (the cold) and have been throwing on warmer socks.

it's the impossibles i hate. it's 'impossible' for me to have DIP or SI involvement. yeah, because it's 'impossible' for you to have been taught wrong, or missed something, or open your damn mind. if RA attacks synovium, why would it only attack synvoium in every other joint BUT DIP/SI? ugh. and you made perfect sense emerald :)

I believe that RA and PsA are just different verses of the same song. Don't think for one second that one is less severe than the other. They both have their own special circles of hell. It is possible to get dx'ed with both.



I've had to forego my mtx for 3 doses since I can't get whatever is wrong with me to clear. Currently I suspect pertussis.

Hi, Steph. Sorry you're having such a rough go of it. If you have a dermatologist, or can get into see one before August of 2017, it might be interesting to have your skin and nails looked at. A small percentage of PsAers develop skin or nail psoriasis AFTER the joint crap starts, and certain percentage never do have visible skin involvement.

As long as your current doc is treating you aggressively it doesn't matter so much whether or not you have a for-sure diagnosis, until it does matter. That would be a battle with an insurance company over authorizing a treatment, or the need for a new rheumy. (My second, charitably described as the north end of a horse headed south, refused to take me seriously on any level, except maybe as a potential drug seeker. I think a definitive diagnosis from my first, which I didn't have, would have given me some tools to use with him. No matter, good riddance.)

If yours is giving you grief for having messed-up DIP joints, she needs to take that more seriously. Deformity is no joke. While PsA often hits DIPs and RA supposedly doesn't, tons of RA patients would disagree. SI joint involvement points towards PsA or AS, as does seronegativity.

I agree with Fiery that the two diseases are different verses of the same song. PsA was only recognized as a separate diagnosis about 40 years ago. Plenty of families do have both diseases running through. Some drugs are approved for one and not the other: Stelara and Otezla have recently come on line for PsA, and I don't think either is approved for RA. I'm currently on Orencia, which isn't approved for PsA, as it didn't clear skin very well.

PsA can help explain some "atypical" symptoms, though, like DIP or SI involvement. I have a couple of very swollen toes, classic PsA dactylitis. Dr. Horse's Patootie dismissed that, as they tend pink and warm- he told me to come back if they went hot and red. This is the small-minded crapola that delays or denies treatment while fingers and toes twist.

Sally the Imaging Advocacy Queen has flown in with great advice about what to ask for, and what to do with the information.

Here's what I'm wondering about with you. Enbrel didn't work. What are the chances Humira will, as they're so similar? It seems like one will work when someone has built up antibodies to the other and it's petered out, or a person may be able to tolerate one if the other has side effects. If you got nowhere with one TNF blocker, though, will you have much of a chance of seeing results from another? Would it make sense to look at a different family of biologics?

'sally the imaging advocacy queen'. is that her formal title? if not, it should be :)

alto, i was curious about the jump from enbrel to humira (as in if one doesn't work, why would another?) but both my cousin and uncle had one work and the other didn't. even though the anti-tnf meds are all the same, there has to be something different about them. i was excited because my younger cousin had no luck with enbrel but luck with humira, so i was hoping it would help. it hasn't yet, but i know i have to give it a bit more time.

i don't know where to go from there, but i think i'm going to focus on the imaging for now. when i put my left hand down on a flat surface, if you look straight at the tips of my fingers, you can see my first three fingers turning outward. like if the fingernails are supposed to look like this...

_ _ _ _

mine look like this...

\ \ \ -

not as drastic, obviously, but you get it. i hope. they're not turning at an angle at the joint, like i've seen in so many google image searches for RA deformities, they're like twisting outward, like if you were turning a bottle cap. no one has ever taken my seriously with it when i've asked. but the DIP joints are painful, as are most of the other joints in my fingers. and thumbs.

Humira binds to tnf a and blocks p55 p75 cell surface receptors.

Enbrel is actually the soluble form of p75 tnf receptor. It inhibits binding to tnf a and tnf b to cell surface tnfr's rendering tnf inactive.

Difference is there, so that's probably why one can work but not the other. Then again if tnf isn't you're problem at all, then maybe neither will work.

I hope you get things worked out. I'd say, "i had imaging of 'THIS' joint 'THIS' long ago. I want to see if more damage has occurred, and keep a running log of THIS joint to assess progressive damage. Can I get an mri of 'THIS' joint so I can continue monitoring it?"

Blunt, to the point. Good luck with it all!

I too am concerned with the lack of imaging from my rheumy. I have my regulary scheduled appointment on Friday and I'm going to insist at the least that my hands get looked at.

Steph - opposite to you, what i'm seeing in my hands in the top joint section on my pinky finger is turning inward, towards the thumb.
On all of my other fingers i can line up a ruler in the middle of my finger joints, and my it ends up being in the middle of my finger nail, so everything is straight. On my pinkys though - when I use the ruler trick, the ruler ends up hitting the outside edge of my finger nail - definitely some deformation going on.

Good luck to you... and hopefully both our appointments will go well!

Within a few months of first having symptoms of RA, the distal joint of my pinky finger had cocked by about 45 degrees off straight. Imaging a couple months after that should bone erosions. It's a bunch of baloney to say RA "can't" affect those joints, just because it usually doesn't. I have a family tree worth of evidence that it can. I had a dentist tell me that my jaw couldn't be affected by RA because only 1% of people with RA had jaw joint involvement. But somebody has to be in the 1%, don't they?

If you use the advice other folks here gave about how to ask for imaging you want done, and the doctor refuses, ask why. They do have experience dealing with insurance companies, and it may give you an idea of where you need to focus your efforts to clear roadblocks. Best of luck and don't give up!

welp, i've entered the land of 'aetna specialty pharma hates steph gas' and am having to make multiple phone calls again to try and get my effing humira.

i'm seeing my rheumy tomorrow, but was told she's leaving the practice. i was looking online trying to find other rheumies in the area and am not having luck finding one that fits the parameters i am comfortable with (female because i have trouble with male authority figures). i have been questioning her crap for the past few months after feeling like she's just ignoring things (DIP, etc) so i think i'm going to take this as an opportunity to shift over to a new rheumy.

i'm still going to request that she order a bunch of imaging, and i'm going to have my bloodwork done. i'm thinking if my bloodwork looks okay, i have at least 2 months left on humira before i can 'fail' it, so i can try to find my way into a new rheumy at that two month mark.

i've lost all faith in aetna's mail order and specialty pharmacies. i've had nothing but trouble with them. i used to use cigna's mail order pharma with no issues at all. even when i was trying to get my folic acid and mtx through aetna's mail order pharma, it was a ridiculous hassle. and they charge me more for a 90 day supply than it costs at my local CVS. which doesn't make sense, but i have the receipts to prove it. so back to monthly scripts as CVS i went. but i still have to deal with their pathetic specialty pharma.

Wow! Sounds like you'll be starting with new Dr.
If your current RA won't budge on testing I'd test any new doctor by asking right from the start.

I've discovered doctors do not want to battle insurance over certain tests. It's always been an issue but I think it's worse then ever.

Since you were on Enbrel with no luck & now Humira I don't see why any doctor would put off trying another med, as pointed out these are in the same group & not effective with your case.

I'd just let the new doctor know this is the path forward you were working on with your previous doctor. Testing & finding an effective treatment.
I don't see one switching from Enbrel to Humira often.
Coaltrain but his was insurance dictated.
As you pointed out with your cousin you never know.

Not thrilled with my new speciality pharmacy either. Not near as efficient as my old one. I don't get why they can't get on board.

I have the SI joint & back also a long with cervical. I can say when the RA flares so does the rest. I can't help but wonder if there are 2 types of arthritis present at times such as AS & RA but the doctors hyper focus on RA.
Makes sense to me if there's one it's possible there's another.
The testing is not there to rule in or out as with RA.
I read & hear of many others complaining of the same areas.
Also makes sense if one has RA that one would be more susceptible to DDD, degenerative disc disease.
Of course these are my opinions.
Hope you have some luck.
Your long over due.
Blessings, Sammy