PSA & Osteoarthritis

I have been on a low dose of Methotrexate once a week and 800MG of Etodolac daily since late Dec and so far I have not see a lot of improvement. My Rhum doctor told me this week that she thinks most of my issues are from osteoarthritis. She said there was no other meds she could prescribe and suggested that I take Tylenol for the pain.

Has anyone else been through the same thing?? If so what did you do??

I haven’t been traveling the last week and I feel better than I have in months. I will be back to traveling as soon as the Coronavirus scare is over and I know the pain will be back with a vengeance Not sure how much longer I can work in a job that requires 75% travel. Thanks for letting me vent about travel!!!

1 Like

Many of us dread the ‘O’ word.

It is of course quite possible to have osteoarthritis as well as PsA. OA is very common, especially as we get older and, also, PsA can cause OA in joints as well as other types of damage.

But then, sometimes, a doctor will start nudging PsA out of the frame and blaming more and more on OA. This has so many implications for treatment and can be very confusing. The question is, what do you think?

Leaving aside the important issue of travelling for now, the key thing is to get the right diagnosis and the right treatment, whatever you have. If you doubt that what your rheumy is saying is correct, if you think PsA is your main issue, you need a second opinion ASAP.

4 Likes

Yes, kidflemingo, Sybil’s hit the nail on the head.

What kind of doctors told you that you are just getting old? And who listened to you? A key to this battle is getting the right diagnosis, but also finding a doctor who believes in aggressive treatment.

We’re glad you found us! Tell us more about what’s been happening.

Seenie

1 Like

I was a chiropractor for 30 years. I worked with nutrition and supplements for my patients with OA for years. When my PsA symptoms began, my own chiropractor, my MD, and I all thought it was my OA getting worse. I used all the same supplements and nutritional strategies I recommended to my patients…and some of them helped. I avoided NSAIDs as much as I could because I knew more than most MDs about their long-term and short-term adverse effects.
Looking back, I think the number of patients who have PsA before getting classic psoriasis plaques is probaby enormous. I think my own mother had it until her death at 64. She had palmoplantar pustulosis that she showed to at least 10 or 12 doctors over the years (including me!), and none of them recognized it. We both have had lifelong fragile, splintery fingernails that ridge and sometimes pit. But she never had classic silvery-grey flaky psoriasis plaques and she was always told she was just getting old.
I was misdiagnosed with degenerative arthritis in my wrists and hands, even after being evaluated by three different orthopedists for a long-term disability insurance claim. Every doctor to whom I complained about my feet said I was old and fat, so I should expect to have osteoarthritis.

Then I was misdiagnosed with gout because I had altitude sickness which caused my uric acid to rise. The allopurinol almost killed me due to DRESS syndrome. Then after I got down to sea level, a nurse practitioner misdiagnosed my scalp psoriasis (which began years AFTER my arthritis!) as a skin infection and prescribed trimethoprim, which put me in the hospital with a 104-degree fever, leukocytopenia, and kidney shutdown.ter

When I developed plantar fasciitis, I went to a podiatrist who said I had PF because I was overweight (ignoring my flaking, pitting, curling toenails) and sold me shoe inserts.

It took another two years and being nearly crippled by pain before my plaque settled into a classic flaky red pattern and I self-referred to a rheumatologist who correctly diagnosed it.

1 Like

I agree with finding a 2nd opinion, IF you can. Rheumatologists are fairly scarce in my area, so don’t know if you’ll be able to find anyone else to advise you. I’ve had PSA for many, many years and recently (within the past year), have developed OA in my foot. This is going to sound very weird, but a friend who works for a CBD company recommended a tincture mixed in water to drink. I tried it and after about a week I could walk without pain. This was huge as I work as a challenge course facilitator so am out in the woods all day leading hikes in some fairly rough terrain. I continued taking it as recommended on the label for about 1 month then discontinued use and have been able to keep up my regular activities with little problem. There is still a twinge now and then, especially after heavy use, but nothing compared to the pain previously. The last time I used the oil was 8 months ago. Not saying it will work, but it may be worth a try. PM me for the brand I tried. Best of luck!
Robin

Hi there @olsonrobin, really glad to hear that walking is easier again.

I’d be wary of drawing too many conclusions about the apparently lasting effects of the CBD tincture.

I think 2017 was the last time I had foot pain bad enough to make walking difficult. That was thought to be OA at the time. Subsequently, the pain eased without any extra medication. And also new x-rays showed that the areas thought to be OA were actually PsA erosions. Plus, the worst erosions, on my right foot, had never hurt & still haven’t, it was the left one that had been giving me trouble!

In other words, my experience has been that sometimes OA turns out to be, or is superseded by, PsA. Sometimes PsA messes everything up, then it may ease up. Sometimes bad stuff doesn’t even hurt!

Due to my utterly confusing experience of this disease I tend not to link improvements to life-style changes or diet or anything at all unless they are very impressive or very long-lasting!

1 Like

Totally agree with you about being wary. That’s the reason I hesitated to even mention my experience. Interesting about your OA actually being PsA-related. I’ll mention that next time I have to have xrays.

Thanks for sharing your experience!

2 Likes

You guys have hit on a pet peeve of mine. Since 2014 the use of mass spectrometry
no fewer than 12 PsA protein mediators have been discovered in Synovial fluid in MOST PsA patients.

But it seems we still have no small number of Rheumies that blow off OA despite the fact it has been well known that since 2005 inflammation is present in OA joints well before the development of significant radiographic change. imaging modalities as well as direct arthroscopic visualization has suggested that, even at its earliest stages, this inflammation before visible cartilage degeneration has occurred.

Now I understand “the blow-off” Once the Damage is done there is really Chit you can do about it. You just have to deal with what you have. (and that is a LOT of pain) I get that.

What I don’t understand is WHY in the Sam Hill that the instant one can confirm PsA why Folk put off as aggressive as possible treatment as possible and WHY more Rheumies don’t push more strongly aggressive treatment from the git go knowing what will inevitably happen.

I think part of it is Docs are in an ethical conundrum and unless a situation is emergent and life threatening, they feel it improper to “push” treatment but rather leave treatment as “elective” or one of several options. This in our arena is largely due to a large body of folks treating many of our symptoms with sharp knives. The thing is, that other than a few injections, Rheumies make not one dime From treatment - they have no “procedures” leaving them among the lowest paid specialists out there. All they have is intellectual time to sell. Being as that is what they are being paid for they SHOULD (and the young ones do) SPEAK up.

I ran into an interesting dilemma last week. My oldest daughter has a brain tumor. It’s a smallish 1.5 cm benign brain meningioma mostly asymptomatic. We met with a world-class brain surgeon last week. He was proposing watch and wait. I made the comment that Brain surgery wasn’t elective and Megan shouldn’t decide because she wanted the thing outta there. His response was surprising. He said that unless there was some certainty thing would go badly south before we got to the parking lot, all surgery was elective (I knew we had the right guy) So then I tried if this was you, what would you do? I didn’t think it would work and it didn’t. His response was. I can’t answer that because it isn’t me, and would be unethical to answer because it isn’t. We are all different. So I tried another way. “what would you do if this was your daughter” His answer (I’m really liking this guy now) “I would send her to a different doctor, because it would be unethical for me to decide” Okay so apparently we both have a Jesuit education (low and behold be both did) We finally developed decision matrix and Megan opted for the surgery at summers end (shes a flyfisher too and lives on the edge of an amazing blue-ribbon stream and didn’t want to mess up the whole summer) Long story short once we did the paperwork committed to a schedule he finally said, “FWIW, that’s the right decision.” Okay, I’m happy but he got the last word. Being ever the Contrarian, I asked him if he would have said we made the wrong decision and he answered, “of course not, THAT wouldn’t be ethical”

Bottom line is, these guys hands are tied. Perhaps they shouldn’t be but they are. Rsearch is tough but it can be done. Clearly without treatment early and aggressive, PsA patients WILL have OA issues.

3 Likes

PsA likes going for damaged areas, yes? So if we have OA and PsA, the PsA will likely hit the OA-affected joints (less so if PsA is well-controlled). Is this what you’re saying? My joints seem to have been demonstrating this connection from the off.

I also get that OA is something that happens in joints affected by PsA in addition to other stuff. Learnt that from you a few years back & double-checked it with rheumy nurses while on a patient education course.

Wishing Megan an excellent result later in the year.

1 Like

The inflammatory proteins unique to PsA show up synovial fluid for sure. Now who the acrt and who the horse is, is a different matter. But for sure its a vicous circle/

Megans Day is Aug 11. 3 days in ICU 10 more on the floor, with luck we should be back on the river for the Brown Trout Run (these are actually genetically pure Loch Leven. According to my Dad, first Generation Irish, the only good thing that ever came from Scotland (incorrect IMO Scotch whisky has to be right up there)

3 Likes

Your kids like to keep your busy with health issues don’t they? I hope everything goes smoothly for Megan when she has the surgery.

Didn’t he like Irish Wiskey then? Fingers crossed for Megan - so glad you found a decent doctor.

I got really ticked off at my rheumy when she made a parting comment to me, “of course you have pain at your age, everyone gets OA”. Yet two excellent orthopaedic surgeons who viewed my xrays and MRI scans said, “You have minimal wear and tear, your knees are in great shape. I wouldn’t even consider surgery (replacement). Inflammation is your enemy”. Knees in good mechanical condition yet a major source of pain. The rheumy’s comment reminded me that someone half my age yet a specialist, has training but little experience. “At your age”…sheesh! I JUST passed 60…Lord willing, way more life to live and give! My grandpa at 94 would have said, “Punks, what do they know!”. (I’m not really angry…sorry if this makes me sound like a crotchety old person) ;).

2 Likes

Perhaps everyone does get OA eventually. But to different degrees. At worst it can be crippling so not to be brushed off. And the ageism stinks - to dismiss pain in the 60+ age group when people are living into their '90s and beyond is to tell them to get ready to accept maybe 30 years of misery without seeking further medical advice.

I am becoming a crotchety old person. The fact that people in care homes are dying like flies at the moment makes me think more of us should be.

2 Likes

Couldn’t agree more frankly. I’m not yet 60 but getting close. I’ve been crotchety probably since birth but more so since being diagnosed with PsA. My tolerance for stupid doctors is nil and I tell them that too, frequently. And I perpetually call them out on any such exhibited stupidity and make them account for it.

The present care home fiasco is simply an utter disgrace too.

2 Likes

I was finally able to see a new doctor this week and I have a good feeling about her. I actually had a virtual visit with her last week and she agreed that I needed a second opinion ASAP. The bad part was that she wanted me off ALL my meds for our visit. She said that she wanted to see me in the worst shape possible. That made for a few sore days but hopefully it will be worth it in the end.

She did x-rays, ultrasounds and took a ton of blood and I should have the results in a week or so.

In the meantime she has me on prednisone and I feel like I am 21 again.

She mentioned taking me of methotrexate since it is not helping and trying some sulfur based drug, but I cant remember the name of it.

I will keep you guys posted and I hope everyone has a pain free day!!!

2 Likes

It’s called sulfasalazine and it worked so well for me for a while.

1 Like

Did it eventually stop working for you??

Yes it did as I think my disease progression simply overtook its ability to help me. But it was seriously marvellous when it worked. I’m now on my 3rd biologic and that’s working well too. We are seriously lucky we have so many different meds now which can help us. And more and more being considered and invented. So always have hope you’ll be able to find a med that works for you. But it does seem like you need to change them every so often. Sometimes though not for years.

1 Like

It is amazing what a day makes!!!

I had a visit with my normal Rhum doctor yesterday and she said there was nothing else she can do to help me. She said to see my Ortho doc because my issues are wear and tear.

I had my follow up with the new Rhum doc today and she was AMAZING!!!
She is going to try Enbrel on me and she is very optimistic that it will make a big difference in the way I feel.

God wiling I am on the road to feeling normal again.

2 Likes