Newbie (sort of) with a question

General
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Hello everyone. I joined this wonderful site XXX years ago but other than my first ‘I’ve got a question’ post my only participation has been reading discussions on several topics. So I’ll introduce myself. Again.

Let me preface with a bit of personal info. I am 61 and have lived in Alaska well over 40 years. I currently live in Juneau but many of those years were way off grid in ‘the bush’ far from (remember, this was the pre-electronic era) phones, electricity, running water, stores, doctors, etc. One tends to get used to taking care of oneself and doesn’t even think of going to a doctor short of an injury involving a lot of blood or Very Serious illness. I’ve survived a few of both. I have been living in and around Juneau and ‘civilization’ for about 30 years. I prefer to think of myself as resilient and resourceful rather than nuts. But probably all of the above.

I was diagnosed with PsA several years ago. And, like many of you, only after a constellation of seemingly unrelated odd stuff appearing and disappearing. The delayed diagnosis was in part to the fact that I have always had ‘good skin.’ So much so that I’ve often been told, even by total strangers, “You have beautiful skin.” Go figger. However in my childhood I had what in retrospect was psoriasis on my scalp but it was put down to just really bad, dry dandruff and nothing to trouble a doctor about. And all my life I’ve had ugly lumpy fingernails with thick skin under them and that sometimes detached from parts of the nail bed and snap off. The finger tips would also peel, crack and bleed. It was not until I was in my mid 50s that I figured out that I most likely had psoriasis and PsA. Living in Juneau is wonderful. Until you need one of the many specialist that we do not have in town.

I finally saw a dermatologist who diagnosed psoriasis. Armed with that information I went to my exceedingly wonderful GP (who never doubted something was wrong but couldn’t figure it out) and asked for a referral to a rheumatologist. My choices were to fly to Anchorage (1 1/2 hours away by jet) or Seattle (2 1/2 hours away by jet). The best ones are in Seattle, which is a far nicer city to visit anyway (sorry Anchorage but it’s true) so I went to see one of the rheumatologists his office works with. The appointment went well. I had a diagnosis. Yay!!! It was not all in my head (yes, that had been a suggestion :face_with_raised_eyebrow:) and we decided to start with Plaquinel, the ‘safest’ med, first. I wanted to start least toxic first since I am a long term survivor of a particularly deadly ovarian cancer and have had more than my share of drug fun. Chemo was the beginning of my journey from text-book-healthy to Hades-in-a-hand-basket.

The Plaquinel may have been helping but I just couldn’t hack the side effects. Psoriasis in places it’s NEVER been, fingernails falling off, spacial disorientation, memory issues…aaaccckkkk! So I stopped taking it. Shortly after I was notified that my doc would no longer be seeing patients as he was going into research. I wasn’t too keen on seeing the other doctor my clinic works with. I’d heard some quite undesirable things multiple times about him and I’d had enough fun in Nasty Doctor Land. Not going back there. So I was without doctor or meds but c’est la vie.

Finally after about another year I decided I should probably be getting some sort of treatment so I found another doc. This one did a decent exam, though nothing spectacular, drew blood, took X-ray, etc. I could not stay in Seattle for days waiting for an MRI so I got that done in Juneau. She agreed that I had PsA but offered no treatment and just said to contact her office if I have a flair. Keep in mind that it can take 3 months to get an appointment. And I have to fly 2 1/2 hours. One way. So I felt pretty much dismissed.

So here I am. The only med I have had for several years is Celebrex. My wrists are starting to change. I have an appointment with an orthopedist next week for heel pain that sometimes feels like I’m walking on jack stones. My spine is getting stiffer. My sacrum sometimes screams. My hands are losing strength and dexterity. And that’s just the big stuff. My GP has asked if I don’t think it’s time to see another rheumatologist. Well yeah! But I’m not going to Drs Nasty and Dismissive. I don’t know if it’s a serious faux pas to ask if anyone knows or has a doctor in Seattle they really like. I can not afford to make multiple trips between Juneau and Seattle searching for one. Not to mention the hotels and transportation associated with such a foray. Any help or ideas would be greatly appreciated.

I apologize for the length and organ recital. Hoping for brevity I’ve cut to the chase and left out a lot of medical stuff. I really don’t want to be all whiny. I’m just a bit frustrated. Sorry.

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Not at all inappropriate to ask for a referral in Seattle. I’m sorry that you’ve had such a rough time of this. Certainly where you live doesn’t help with access to specialists, but there’s a lot of that going on. It’s not just in Alaska.

In the meantime, is your GP willing to do some of the work to start you on a different disease modifying med? Can your GP consult with a rheumy out of the area who could help remotely manage your care?

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OMG, Mom_Cat, no apology necessary. Your story is very interesting and I’m glad you finally wrote it! Sounds like you’re doing quite a bit of suffering—what a medical dilemma not having rheumatologists available to you!
Stoney had a good suggestion and maybe that is an option. You could use a biologic, and I don’t think you’d have the SEs like you did with plaquenil.
Anyway, good luck—hopefully your GP can connect you with a rheumatologist remotely! Let us know how it goes.

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That was something I was considering. He did bring up trying MTX but at the time I wasn’t real keen on the idea. I have such fond memories of the last time I took chemo drugs, which is what MTX originally was. I’ve done the baldness, nausea, god awful body aches, potential liver overload, want to curl up in a ball and say ‘shoot me now’ thing. But I may have to rethink it. Besides, I can’t curl up in a ball anymore :roll_eyes: Oddly enough besides still having good skin I seem to have a bigger issue with enthesitis than joints. But maybe I’ve just gotten so used to pain that I’m not a good judge any more. And if it were just pain I wouldn’t be quite as concerned. But I’m thinking if this is progressing I should be concerned about the associated comorbidity potential. And I understand that just because one doesn’t seem to have ‘really bad’ arthritis doesn’t mean the disease isn’t badly affecting some other body system.

Thanks for your input. I really appreciate the community and all the help I’ve gotten just reading the posts. I will speak with my GP but in the mean time I’m still interested in hearing about doctors in Seattle. I suppose at some point I’m going to have to actually go see one. :slightly_smiling_face:

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Hi there Mom_cat. I envy you your location (I may be nuts too) but not the journeys involved when seeking treatment.

I too get concerned about the effect of PsA on the body in general. Inflammation is not good for humans and other animals (you can tell I’m quite the scientist!). And without any treatment, with the symptoms you’re describing, I’d be very concerned about joint damage specifically.

Drug side effects are so individual. I understand the ‘once bitten, twice shy’ effect all too well but I don’t think we should convince ourselves that one bad experience (I’m referring to yours with plaquenil) means that we’re doomed with other drugs too. And also, as I understand it, the very small amount of Mtx which we take, as opposed to the much, much larger doses used for chemotherapy, make its use in rheumatology quite a different prospect altogether.

Because of the sheer distances involved I would imagine that getting back on course with treatment is going to be the hardest part. But once you find something that works your life is likely to get a whole lot easier. I’d say, take a deep breath and jump in. Hopefully you’ll get some input re. doctors in Seattle soon.

Meanwhile, I have no idea how authoritative this magazine is, but the doctor at the top of the list seems promising …

Oh, and:

I reckon this is indeed a thing with psoriasis sufferers. We grow new skin cells all too efficiently perhaps. Which is why we’re all so gorgeous.

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Yes. Yes we are.

Hang in there @Mom_Cat and get to a rheumy who will give you a plan. Formulate a list of symptoms–not just aches and pains but also how those affect your daily routine. And be sure to mention the peripheral joints and your low back involvement. If I could still do it with ease I would cross my fingers for you!!

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Thanks everyone for the replies and support. Whenever I see a doctor I go with a written list of concerns, symptoms, supplements, questions, etc in hand. I learned to do this doing chemo. Brain fog was an issue and if it wasn’t written down it was most likely going to be forgotten. Plus it makes filling out that pile of paperwork they give you a lot easier. And thanks for the list of top docs. Unfortunately one of the docs on the list was the one who made me feel rather dismissed, which is why I was asking about personal experience. But maybe it was just my perception, although I found it odd that no treatment was offered or even discussed. Maybe I wasn’t deemed to be in ‘bad enough’ shape? At any rate, thanks again! I do appreciate all of y’alls time. I know I need to do something.

And yes Sybil, we are all very gorgeous! :wink:

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Hello gorgeous! :blush:

Welcome back, Mom_Cat, and you surely don’t have to apologize for the length of the concert. We love hearing other peoples’ stories: makes us feel, well … kind of normal. So may of us have gone through the “it’s in my head” phase, and also the “it’s menopause” phase and the part that goes “nothing that weight loss and exercise couldn’t fix”. You’re in good company. Oh, and by the way, I was also the one with the beautiful skin. Teenage acne? Naaaahhhh … skin that was the envy of my peers. If they could see me now!

Many of us have also met the rheumatologists Dr. Nasty (you’re “just” depressed) and Dr. Dismissive (your disease is too mild to treat with biologics). But I can tell you for certain that when you get yourself treated by a rheumatologist who cares ad is very knowledgeable about PsA and up-to-date on treatment, chances are good that your life will take a turn for the better. The thing is, when you’ve been suffering the on-and-off, the here-and-there, the "maybe I shouldn’t have lifted all those …:, and the “I’m just old and worn out” for as long as many of us did before being properly diagnosed and treated, you forget what feeling well is like.

After several false starts, and then a diagnosis by a very nice rheumatologist who sought to convince me that there wasn’t much wrong with me except a touch of mild PsA, I hit the wall. I felt awful. I was beyond tired. I was depressed and aching. I finally took the advice of the good people here (well, mostly @tntlamb if the truth be told). I booked myself in to see a PsA specialist a day’s drive away, a night in a hotel, and a day’s drive back. What an investment! They literally turned my disease around with aggressive therapy, and gave me my life back. Yes, I was making the trek every three months for the first year, but then I went to every six for the second year, and now I check in with them once a year. I do have rheumatologist closer to home, but if I didn’t, my GP could easily look after me for the twelve months between checkups.

I think what you need to do is see a rheumatologist who is a specialist in Psoriatic Arthritis. We’re talking about a quirky, oddball disease that is often mild, but which can also be very damaging. (And it can switch gears without warning as well.) No, it is not a kissin’ cousin of RA.

It’s not inappropriate at all to ask for a doc recommendation here. (What’s off-limits is a negative report of a doc. We don’t want to be sued any more than you do.

The person who knows the most about docs in Seattle is @tntlamb . Heck, he knows about docs almost everywhere! I’m sure he’ll drop by at some point to give you some leads. Myself, I would be jockeying to see Dr. PJ Mease, who is one of the movers and shakers of the (admittedly small) PsA world, and who is the author of

Mease PJ, Helliwell P (eds). Atlas of Psoriatic Arthritis. Current Medical Group, London, 2005.

Dr. Mease is one of the the international “rock stars” of Psoriatic Arthritis education and research. There are several of us who make rather long pilgrimages to see PsA superspecialists (Korendowych, Coates, Chandran, Gladman and a few others) and nobody that I know of has ever regretted making that investment.

In your position, I’d run, not walk, to my GP to get a referral to him.

Good luck with this!

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Hi Mom_Cat, you seem like you have one very frustrating situation there!

I too got a recommendation to a Rheumy who was considered the best in the state, but I found to be very dismissive and initially said my arthritis was not bad enough for treatment (at this stage I was googling wheelchairs and knew I would soon lose my job if something didn’t change, as mine was a very fast, painful / activity limiting onset).

In my case I can be very assertive if required, and had already had the advice of the good people here, and I did convince him to put me on MTX. Later, when that didn’t work, I had to bring out more substantial assertiveness to get him to move me to a biologic. That path is not for everyone though (and in an ideal world, we really shouldn’t have to tread it).

The advantages you do have is that it sounds like you do have a good grip on the disease and an understanding of the possible systemic affects, and though I can imagine you don’t exactly relish the prospect of medication after your cancer journey, you seem to realise it needs to be done. As such, I can see why having a Rheumy that will work with you on this would be so important to you.

I’m on my phone right now, but I may be able to do a search for members in Seattle and tag them with a request for personal recommendations, so the inactive ones get an email. Never done that before, so not sure it will work, but I’ll give it a try when I get back to my laptop.

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Oops, looks like Seenie has some great recommendations there before I even got near my computer! Keep persisting, it’s not fun, but it is worth it :grinning:

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But Jen, it’s still a good idea to go looking for others in the Seattle area, just in case Dr. Mease isn’t available. On the other hand, if Mom_Cat can’t see Dr. Mease, no doubt his office could recommend someone.

Another possibility is visiting a long-lost friend or relative somewhere else in the US. There are PsA specialists in Cleveland, in NY …

S

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Thanks everyone! Seenie and Jen75, I must say it looks like great minds can actually think alike! (Kinda scary thought considering I’ve been told that I could write for ‘Far Side’…:crazy_face:) I have been wanting to cut to the chase and go directly to a PsA specialist but haven’t been able to burrow into the web far enough to find one. Thanks for the recommendation.
I had my husband read my post and all the replies, to which he said ‘wow, looks like you’ve got a lot of company.’ We Just talked about finding a PsA specialist in Jacksonville, Fl. (LOVE the ‘not a kissing cousin of RA.’ Nobody seems to get that!!) My entire fam is there and I’m sure we could mooch off of them for housing. Plus it would be a good opportunity to snow bird out of here in the winter! Or even one in MD and the DC area. My in-laws (who are wonderful people) are in MD. We stay with them when my husband has follow ups with the Taste and Smell specialist once a year in DC. (Very much a digression but if anyone has taste and/or smell loss I can give you the name of the only doc in the entire country who actually treats those issues. And with great success.) Although MD and DC aren’t really where we would want to go for a winter appointment. So Jax may be the best option. We usually go there every year anyway to see my my mom who is in her 90s. So recommendations for docs in Jax would be nice too.
I have an appt next week w/an orthopedist for the heel pain. It would be nice to be able to walk further than 100 feet with less pain. And standing longer than a few mins would be a real bonus! I’m also going to speak to my GP about him working with a rheumy out of town. Other than the time difference, I don’t know why one in Seattle would be better than one in Jax? Anyway, I’ll let you know how it goes. I just hope when I finally get in to see the big gun I’m not
as JPN (just plain nuts).
Thanks again! You guys ROCK!!

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Oops! Meant to say ‘not diagnosed as JPN. Aaaccckkk! That’s what I get when I hit ‘go’ too fast…

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There are very few PsA specialists, and even fewer in the Mease league!

You will NOT be declared JPN! Nor is your heel pain going to get better until someone gets a stranglehold on your PsA. (Sorry to break that to you, and I do hope I am wrong.)

Speaking of JPN: when I went for my consult at the PsA Research clinic, I was terrified that they would say “You don’t have PsA.” or suggest that I was JPN. When they explained that I had “Severe disease, with a great deal of damage”, I burst into sobs. The doctor tried to console me by saying “We will get this under control, you will feel better.” But that wasn’t the problem: it was sobs of relief that I wasn’t JFN.

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Sorry Mom_Cat! The site has defeated me and I can’t figure out a way to do a user search on location. If I was a little better with US geography, I’d look at a few hundred users and tag a few, but unfortunately my US geography is so bad, I’d have to google every location to understand if it was anywhere near either Seattle or Jacksonville :joy:

Follow up on Seenie’s suggestion, and @tntlamb will probably weigh in with some ideas too. If you feel really stuck, remind me and there are other means to get people in those cities involved in the conversation… evil laugh:rofl:

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Maybe you’re JALN, which is very normal and I like to think we have to be in order to stay sane. (Just A Little Nuts).

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Did I hear Jacksonville? You are in luck. Benjamin Wang just happens to be there at Mayo. Studied in Toronto at PsA capital of the world, was a full professor before heading to warmer weather. He hasn’t published in a while but he is very good. He understands spondylaropthy and it is his specialty. Of course studying with gladman he would be…

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Ooooo!! I I like paydirt! We wondered if Jax wouldn’t be the ticket. My mom goes to Mayo for her heart and it’s just down the street from both of my sisters. Thanks for the confirmation/recommendation and name! I just hope he’ll take me! IF I can get an appointment. My husband is ready to take me anywhere RIGHT NOW to get some sort of resolution/help/anything. I’m actually feeling better at the mo. However I’ve pretty much stayed off my feet as much as possible but that is NOT a permanent lifestyle solution.

Well, thanks to all you good people, I think we now have a game plan. Orthopedist next week, discussion w/GP about working w/reuhmy out of state, try to get in w/Wang, plane tickets, etc. And if getting an appt doesn’t take months, Sam (husband) is going to be soooo happy to do a snow bird trip! Although the last week or so we’ve had warmer weather than the east coast.

Thanks everyone! Once again, you guys rock!

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See, I told you, @tntlamb knows all the best docs.

:star_struck:

I just looked Dr. Wang up, and he did train with Dr. Gladman (the great-grandmother of PsA research), but it appears that most of the work he did with her was in her other area of interest, lupus. However, that still bodes well for his expertise, and I notice that he lists spondyloarthropathies, of which PsA is one, as an area of special interest.

I see a snowbird getaway in your future!

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Your diganosis sounds like mine. I didn’t even know I had psoriasis until 2 1/2 years ago when I had to have a dermatologist examine me because I had been diagnosed with prostate cancer. I have some in my hair that I always thought was just bad dandruff.

I started on Otezela and it work some, but now I have been moved to Enbrel. Just got the insurance company to approve it. I had been getting smaples from my Rheumy until now.

Good luck with what ever you start with.