I’m sorry you’re going through this. It is a rotten place to be: I was undiagnosed and blown off for years. My sister has had the same, although she managed to get herself referred to a top drawer rheumatologist with a specialization in PsA.
Five rheumatologists and nobody is entertaining the possibility of PsA? While you have pitted nails? Hmmmm…do you have any other skin issues, however mild? Or have you already been diagnosed with psoriasis?
I’m just wondering whether you might be able to get in to see a dermatologist, and have them trial you on Enbrel. Your MD is investigating whether he would be able to let you test drive a biologic, but I’m guessing that your insurance won’t cover the bio unless it is prescribed by a specialist. And you don’t even want to think about the possibility of paying out of pocket. Yikes!
As for the prednisone, I’m with you: it turns me into a manic, shrieking harridan. BUT it did help greatly with my pain, which was the point of the exercise: pain that responds to prednisone can be assumed to have come from inflammation. Other than the nasty effects, did it help your arthritic symptoms at all?
Hang in there, TD, and hang out with us. This is a great place to vent, and we’re glad that you’re here.
It is quite bizarre…I’ve been evaluated by 4 dermatologists and had multiple biopsies : dry, scaly, thick pruritic patch on my knee and underarm near elbow consistently gets knocked down for psoriasis but is still an inflammatory condition. Also, I can’t get through a day without pre-conditioning the groin and buttocks… The MTX and plaquenil seem to keep the skin conditions under control but the pain in my hands and feet are getting worse and now any movement in my arms creates sharp pain radiating from the elbow area…
I’ve given the MD all the necessary supporting documents required to gain approval and the pre-authorization form does have a checked box for Internist/MD…It’s not like I haven’t tried other DMARDS and partially failed so I’m optimistic…but it will be a devastating blow if I’m denied…
A low dose of prednisone, aside from the side effects, worked amazingly on everything and I’m tempted every day to start them again…I feel like a smoker that quit “cold turkey” and can pick up a cigarette at any time like he never stopped smoking…
I’m not familiar with with the biopsies. The dermatologist just looked at my elbow and said yes that’s psoriasis… I don’t understand why the 5 reumathologists don’t get together and see what it is… Seems like an extremely rare disease that looks like PsA but isn’t… They must be interested to find what it is then… They could publish the case study and add that to their names… lol
I hear you on the Prednisone… it’s been like 10 years and it still feels the same wanting them then when I feel bad and want some alcohol… I don’t even remember how much they did for me… I don’t have that with any of the other meds I’ve had…
Just ‘liked’ your post in error while trying to reply (not that I don’t like it, but I don’t want you to think I ‘like’ the fact that you’re having such a frustrating time.)
Re. the question mark over your skin conditions, I had a whopping big psoriasis flare in 2015, it spread quickly over most of my body. Despite already having a firm PsA diagnosis and a history of minor psoriasis, the dermatologists proceeded to scratch their heads almost as much as I was scratching mine. I saw at least 4 dermatologists too, though at the same clinic. What was most disheartening for a while was that my rheumy wasn’t sure either, and I had him down as a bit of a genius. His addition to the smorgasbord of possibilities was ‘discoid lupus?’
In time it was decided that basically I had psoriasis and nothing but psoriasis. The way that the long period of uncertainty was explained was that my psoriasis was being partially treated by Humira and therefore presented atypically. So where I’m going is, might you have psoriasis that looks ‘atypical’ due to Mtx etc.?
Your biopsies … I had a biopsy on one patch in case it was skin cancer and it did come back as ‘partially treated psoriasis’. However years ago I had a biopsy of toenails that rheumys readily recognise as psoriatic and all that came back was ‘not fungal’.
I think it is a question of ‘how many dermatologists does it take to diagnose psoriasis?’ Answer: ‘the patient’. All sorts of things were suggested for me including some quite exotic possibilities, it was just mad. And were I to go back 30 years … there was an episode of dermatologists earnestly examining me for worms after my inverse psoriasis in armpits spread elsewhere. That was a low point.
I think it might be worth seeing yet another derm. That’s where I’m going. Maybe even another and another if necessary. It just takes one doctor and the clouds disperse. Okay, we can’t say you have psoriasis, but whatever it is should get diagnosed and if it is indeed psoriasis, which seems very likely, that would help so much.
Seenie here, wearing the cap I do for my “other” job. I’m too tired to log out and log back in as me. ThreadDesigns, it’s just crazy the number of derms and rheums that you’ve seen. But I’m with Sybil: another derm might just see it a little differently.
I’m wondering if there are any PsA specialists (probably researchers) near you? That is where I got a solid diagnosis and a treatment plan that made sense to me at the time, and then worked.
At one point in my journey, I was desperate for someone to say “This is what you have, this is how bad it is, and here’s what we are going to do about it.” When that finally happened, everything was different.
Seenie
I’m sending a big e-hug… OK, 10 days late but… I stumbled on this thread late and I need more time to read the rest, but I feel like I could almost have written that myself GrandmaJ
I’ve got weird fungussy looking toenails and pitted fingernails.
No one cares what it is even though it would nail my diagnosis from “probable” or “likely” PsA to definitive.
I wonder if they want to reserve their diagnoses, just in case a new drug comes up for a related disorder then they can use it and revise diagnosis.
I still think it’s a liability thang…unless there’s something in our blood that can be used as evidence in court …many doctors will continue to “play dumb”…
I just spent 24 hours in the hospital. I really wish we could figure out what’s wrong. I’ve been having weird chest pain (again) for a few weeks now and yesterday it got so bad I went to the ER and was admitted for observation. It felt exactly like what I had in August that ended up being a coronary blockage, so I was scared.
Stress test with heart scans and the whole bit came back negative for blockage, so now I’m on a stronger med for acid reflux to see if that’ll help. I really hate doctors, hospitals, tests with no definitive answers and wish I was the person who could just ignore everything and completely avoid medical anything, including pills. I’m almost wondering if the more pills I take, the more SEs or whatever–can’t figure out why all the reflux and chest pain???
Wouldn’t it be fun to be 100% healthy and not have to deal with all this #$@& *#$# ???
Gentle hug! Can you really not tell the difference between heart blockage pain and heartburn? I mean I get that if you don’t know it’s heartburn it can be worrisome… but I always thought it would be very different if there really was a problem… And since you had blockage before and I’m assuming heart burn?..
I do hope you’ll feel better soon! Or at least they figure out what’s wrong… And can fix it then…
Actually, when I had my blockage, and it was a big one, the pain/discomfort/whateveryoucallit was weird and I wasn’t so sure what it was at that time, either. I now have been having this almost constant “icky” feeling in my chest, and yesterday it got bad enough or should I say BIG enough to be concerned that it was my heart again.
BIG meaning it covered my entire chest, front to back and I got slightly nauseated and sweaty–this was while I was driving alone 70 miles home from the Minneapolis airport. (I wasn’t nervous about driving at all, so it wasn’t anxiety at the time.)
Heart pain can be varied and most of us women don’t think of it as really bad pain, so we tend to be confused about it and many women don’t get treatment. I almost didn’t go to the ER when I had the blockage in August because I wasn’t sure about the pain at that time.
It is really hard to tell from reflux or heartburn.
Dr. prescribed Pantoprazole (Protonix) and hopefully that’ll cure it and will prove that this is a stomach problem! Thanks, Cynthia, for the hug and kind words.
Fingers crossed that the Pantoprazole helps you in the way it helped me. My issue wasn’t pain, but feeling as though my throat and nose were closing up, which was fun. Pretty much cleared it right up.
Got a problem with the Pantoprazole…my right eyelid got all puffy, red and inflamed (burning and sensitive) last night and hasn’t gotten any better all day. I had only one dose of the Pantoprazole yesterday, so I’m not sure one dose can cause this eye problem, but it states on the med info to get medical help right away if eye(s) become red or irritated. So, I messaged my doctor tonight and won’t take any more doses–too scary if it can hurt my eyes. It hasn’t helped my stomach at all anyway–actually, my stomach feels worse instead of better! I think I’ll ask if I can take the Pepcid instead in a larger dose.
I’m so sorry you’re feeling awful. I fired 4-5 rheumy’s until I found a good one. Is your rheumy using thie Treat To Target strategy. Below is an article about it - I sum it up this way. What is YOUR target for PsA and keep working on it until you get there. That may mean changing meds, increasing doses. The idea is that the rheumy and you don’t stop until you reach your target.
By Carol Eustice - Reviewed by a board-certified physician.
Updated June 25, 2015
“Treat to target” is a principle or approach that has been successful in treating certain diseases and conditions. The strategy initially was used to treat hypertension, high cholesterol, and diabetes. But, the scope has broadened and treat to target has made its way into the thinking of rheumatic disease specialists.
Treat to Target in Rheumatoid Arthritis
In rheumatoid arthritis, the primary target is remission. Low disease activity is also another target, perhaps even more achievable and more realistic in many cases. To hit the target, inflammation must be controlled or suppressed. This is measured by evaluating disease activity. DAS28 (Disease Activity Score) or CDAI (Clinical Disease Activity Index) are among the ways disease activity can be assessed.
Big relief that the blockage tests were clear but it’s going to be hard for you to relax while you’re so uncomfortable and with new issues coming out of the woodwork.
Chill as best you can, thinking of you and watching this space hoping the clouds clear soon.
Are they SURE it isn’t as simple as Costochondritis (common with PsA) which is easily cleared up with injections or few days of colcochine? The pain and tenderness that can usually be reproduced by pushing on the involved cartilage in the front of the rib cage…
This has got to be one of the more confusing PsA symptoms. I think my heart / digestion are still fine and I think it is indeed costochondritis that affects breathing, mimics indigestion, causes random chest pains, especially by the evening. Mainly on left side and the intercostal region nearest arm is always tender when I press it. So what happens if heart problems do join the party, how the hell to know?
I suppose that the only way to proceed, as you’re saying, is to emphasise PsA again and again with doctors but for Grandma_J with her recent experience to get heart checked promptly too, as she is doing. But there’s still this issue with PsA … docs don’t necessarily get it. I was all prepped for unnecessary tendon surgery a few years back till my leg magically started working again, I’d been yelling blue murder about PsA but it didn’t register.
