Where does PsA start -- and end?

General
1

Hello friends,

I've been absent from this site for a while because I've been dealing with health issues on several fronts, which brings me to my question. I thought I knew what the primary symptoms of PsA were, but now I'm wondering if there's a whole host of things of which I'm not aware.

I have a wonderfully caring and relentless primary care doc. She is determined to get to the "cause" or "causes" of the health challenges I've developed over the past 6-7 years (I feel as though I've aged at least 20 years in that amount of time). Bottom line -- she is convinced it's all autoimmune related.

15 years ago I had irregular heart beats -- an ablation seemed to "fix" the problem

7 years ago I was diagnosed with psoriasis

3 years ago the irregular heart beats were back -- another ablation

2 years ago I was diagnosed with PsA

2 years ago I started experiencing severe pain in my jaw and mouth

1 1/2 years ago I had surgery to repair my right TMJ -- no pain relief

1/2 year ago I had surgery to replace my right TMJ -- no pain relief, in fact worsening pain

3 months ago I was diagnosed with trigeminal neuralgia

2 months ago the irregular heart beats were back, and now I also have some CHF (I'm seeing an electrophysiologist in September to see if they want to try another ablation or a pace maker)

In the midst of the heart issues and the jaw/face pain and surgeries, I'll admit I've just tried to ignore my PsA -- and I've missed an appointment with my rheumatologist. But my primary care thinks that my PsA could actually be at the center of all this, including the trigeminal neuralgia (she thinks it's irritating the trigeminal nerve).

Anyway, if you've read this far, THANK YOU. You are already too kind! If you have any ideas, suggestions, similarities, differences, I'd love to hear them.

Peace, my friends.

Niel

2

Quite simple really, I reckon your primary care doc is on the ball. I may be about to expose my massive ignorance but hey .... TMJ - that's a joint isn't it? - Tick. Trigeminal neuralgia - I think others on here have that -likely tick. Heart problems - PsA can affect the heart - another likely tick. Psoriasis - no brainer. Time to make another rheumy appointment?

3

Good points all, Sybil! And my primary care would love you. She's been telling me over and over again -- make an appointment with your rheumatologist! Although, she is also trying to get me an appointment with a new one at Barnes/Jewish hospital in St. Louis (about an hour from me). We also wondered about an internist -- someone who can look at all the converging systems as a whole, and not just their little piece of the puzzle.



Sybil said:

Quite simple really, I reckon your primary care doc is on the ball. I may be about to expose my massive ignorance but hey .... TMJ - that's a joint isn't it? - Tick. Trigeminal neuralgia - I think others on here have that -likely tick. Heart problems - PsA can affect the heart - another likely tick. Psoriasis - no brainer. Time to make another rheumy appointment?

4

Having someone with an overview sounds ideal, so often we have to try to fill that role ourselves. I hope you end up with a great rheumatologist and encounter fewer problems, you've been through such a tough time over the last few years.

5

Niel, welcome back. I’m so sorry that you’ve been having such a rough go. Tntlamb should really be the one to weigh in on this one, and I hope he does. But I’ll put my 2c worth in anyway. The scientific principle of parsimony would suggest that if you can find one cause for several events, you are probably right. Or something like that, anyway. (If I’m wrong, tnt will point that out, LOL) It certainly was so with my my many seemingly unrelated medical problems (most of which were minor compared with yours). If I add my Mom’s medical history into the mix, there’s even more. She had Atrial Fibrillation which I’m convinced was part of her psoriatic disease.

I guess what I’m saying is that I’m with your PCP: get thee to a rheumatologist who might be able to connect the dots. Remind me, though, in the midst of all of this medical misery, what PsA therapy are you on these days?

6

Thanks so much for the response, Seenie. Always encouraging to hear from you -- always. I was injecting Enbrel and MTX (10 ml) weekly. But I stopped both when my heart problems came back. I kept hearing the phrase in my mind, "new or worsening heart disease" as a side effect with Enbrel, and I was feeling pretty miserable (couldn't breathe, couldn't do much of anything without feeling dizzy, lightheaded and out of breath), so I stopped both the meds. I was overreacting for sure, but I was afraid the Enbrel was attacking my heart. Turns out I had fluid in my lungs and that's likely why I felt so miserable. So now I'm really back to square one on my PsA therapy. So....it's time to see a rheumatologist.

There just has to be some correlation between all this stuff -- especially the heart. Like your Mom's AFib and her psoriatic disease. But if there are specialists out there who are intentionally connecting the dots I sure haven't found them yet. My regular rheumatologist seemingly had no interest in my jaw pain, and his only interest in my heart was to get the OK from my cardiologist to put me on Enbrel. Which I appreciated greatly. But no "dot-connecting" yet. My dots are still out there, floating all alone...

Before I get lost in self-pity, thanks again for your response! I'll wait for Tntlamb to straighten me out:)

Seenie said:

Niel, welcome back. I'm so sorry that you've been having such a rough go. Tntlamb should really be the one to weigh in on this one, and I hope he does. But I'll put my 2c worth in anyway. The scientific principle of parsimony would suggest that if you can find one cause for several events, you are probably right. Or something like that, anyway. (If I'm wrong, tnt will point that out, LOL) It certainly was so with my my many seemingly unrelated medical problems (most of which were minor compared with yours). If I add my Mom's medical history into the mix, there's even more. She had Atrial Fibrillation which I'm convinced was part of her psoriatic disease.
I guess what I'm saying is that I'm with your PCP: get thee to a rheumatologist who might be able to connect the dots. Remind me, though, in the midst of all of this medical misery, what PsA therapy are you on these days?
7

Thanks for your encouragement, Sybil. I know there are countless people out there who are suffering in ways that are far, far worse than mine. I'm trying to remember what it felt like to be "normal." But I guess I should just focus on this new "normal" and be grateful for any kind of improvement from here, right?

Sybil said:

Having someone with an overview sounds ideal, so often we have to try to fill that role ourselves. I hope you end up with a great rheumatologist and encounter fewer problems, you've been through such a tough time over the last few years.

8

So you took the decision to stop your meds because you were concerned that Enbrel might be causing or contributing to your heart problems ..... that seems to me to be rather different from letting the PsA drugs go by the by because you couldn't be bothered to think about your PsA.

When you made that decision, in the midst of so much going on, that's when you needed an expert overview for sure. Or at least for the specialists to communicate and decide whether you should continue Enbrel. I can definitely see where your desire for someone to pull it all together is coming from.

I've got skin problems that may have been caused or are exacerbated by Humira - and I appreciate that what you've been through is a lot worse than that. The specialists & my GP are communicating about it in order to decide what to do for the best. The communication gets a bit clunky, but it's getting there & I'm so grateful. I anticipate being asked for my thoughts about the drugs I take but basically the experts are on the case. Clearly that is what you need but I reckon a very good rheumy who would take the initiative with other docs would be a start, more than a start.

Niel said:

I was injecting Enbrel and MTX (10 ml) weekly. But I stopped both when my heart problems came back. I kept hearing the phrase in my mind, "new or worsening heart disease" as a side effect with Enbrel, and I was feeling pretty miserable (couldn't breathe, couldn't do much of anything without feeling dizzy, lightheaded and out of breath), so I stopped both the meds. I was overreacting for sure, but I was afraid the Enbrel was attacking my heart. Turns out I had fluid in my lungs and that's likely why I felt so miserable.

9

Hi Niel, you bring up such an interesting question. It's one I think all of us have pondered. Twenty years ago or so, I woke up in the middle of the night--heart pounding so hard it felt like a cannon going off in my chest. We actually woke our kids so I could say goodbye before the ambulance took me to the ER. The cardiologist assigned to me said my EKG showed I had a heart attack. I was 40-ish, thin, a non-smoker, etc., so you can imagine I was dumbfounded and SCARED! Fast forward through several heart tests and 2 more episodes of that same "cannon fire" going off in my chest over about a 13-year period, after the scare of being told I had had a heart attack I was finally told that my EKG had changes that look like I've had a heart attack but I really didn't. More recently my doctor wanted to refer me to an Electrophysiologist (I think that's what she called it) and I decided I'll wait and see instead. Other things, like back problems and plantar fasciitis in my 30s were never linked with PsA at the time. I wasn't diagnosed until my mid 50s--after a lot of other symptoms of pain and swelling, I think my weird fingernails were the clincher!

The heart stuff was never considered a PsA symptom, but looking back I've often wondered if it was. I've also had problems with ongoing mild pain in my sternum area for years and years, and my internist once chalked that up to wearing my bra too tight! That's why it gets so annoying and I just give up on bringing these things to the doctor's attention. I have a habit of not wanting to spend any time in doctors' offices unless it's my yearly checkup (which are now 3--dermy, rheumy and internist) or some sudden acute pain that needs investigation....but, it is frustrating, isn't it? I don't think we'll ever know for sure which of our symptoms are PsA-related and which are some other unrelated condition. I tend to compare myself with my parents, who were both so tough that they just never stopped--if there was a health problem they really didn't let it interfere with their day-to-day living. I want to be like them! My mom, 90, has endured severe pain from a whiplash 3 years ago that has improved over time, but really, at this point in my PsA life, I can't imagine going about living as active life like she when I'm that old!!! But she doesn't have PsA. Does a disease like PsA affect every cell in our bodies? Even our brain cells? I really do think it "gets inside my head"!

10

I had joint surgeries scheduled and Rheum said he wouldn’t recommend it. The one 2 I had done didn’t resolve my pain either. Sadly you might have to have them to function and they fix problems but if the pain is Psa, you have to get a handle on it because it is so tricky and causes so many symptoms. Take the time and get to your Rheum. It’s quite a battle, but better control can lessen the pain. Good luck!

11

I have begun experiencing jaw pain the last few weeks myself. I am recently diagnosed and have just finished my first ,month of mtx. I am discouraged and trying to stay positive. Reading similar accounts (even though your heart issues are the true worry) really helps me. Thank you for sharing.

12

Grandma J, you made me laugh! Not about your health problems, for sure, but about PsA affecting every cell in our bodies -- brain cells included:) Sounds like your parents were made of some pretty strong stock. I can't tell you how often I try to tell myself to "be tough," "push through the pain," "you can do this," "it's only pain." Sometimes the self-talk helps, but not always. Thanks for your response. Don't ignore the heart stuff, please. I now have TWO electrophysiologists. I'm pretty sure the first one was able to put an addition or two on his house, buy a couple of cars, send his kids to college on what both insurance and I paid for the procedures he did on me. But the heart is a pretty important organ, so there's not much I could do about it...

Take care of yourself!

Grandma J said:

Hi Niel, you bring up such an interesting question. It's one I think all of us have pondered. Twenty years ago or so, I woke up in the middle of the night--heart pounding so hard it felt like a cannon going off in my chest. We actually woke our kids so I could say goodbye before the ambulance took me to the ER. The cardiologist assigned to me said my EKG showed I had a heart attack. I was 40-ish, thin, a non-smoker, etc., so you can imagine I was dumbfounded and SCARED! Fast forward through several heart tests and 2 more episodes of that same "cannon fire" going off in my chest over about a 13-year period, after the scare of being told I had had a heart attack I was finally told that my EKG had changes that look like I've had a heart attack but I really didn't. More recently my doctor wanted to refer me to an Electrophysiologist (I think that's what she called it) and I decided I'll wait and see instead. Other things, like back problems and plantar fasciitis in my 30s were never linked with PsA at the time. I wasn't diagnosed until my mid 50s--after a lot of other symptoms of pain and swelling, I think my weird fingernails were the clincher!

The heart stuff was never considered a PsA symptom, but looking back I've often wondered if it was. I've also had problems with ongoing mild pain in my sternum area for years and years, and my internist once chalked that up to wearing my bra too tight! That's why it gets so annoying and I just give up on bringing these things to the doctor's attention. I have a habit of not wanting to spend any time in doctors' offices unless it's my yearly checkup (which are now 3--dermy, rheumy and internist) or some sudden acute pain that needs investigation....but, it is frustrating, isn't it? I don't think we'll ever know for sure which of our symptoms are PsA-related and which are some other unrelated condition. I tend to compare myself with my parents, who were both so tough that they just never stopped--if there was a health problem they really didn't let it interfere with their day-to-day living. I want to be like them! My mom, 90, has endured severe pain from a whiplash 3 years ago that has improved over time, but really, at this point in my PsA life, I can't imagine going about living as active life like she when I'm that old!!! But she doesn't have PsA. Does a disease like PsA affect every cell in our bodies? Even our brain cells? I really do think it "gets inside my head"!

13

LN2015, please let me know if your jaw pain improves as you continue on your PsA meds. And please don't get discouraged! There are lots of us out here who can relate and who lean on one another all the time. You are NOT alone. I know you're early in your diagnosis and treatment, but if the jaw pain leads you to a dentist and then to an oral surgeon, please be VERY cautious before you agree to any kind of invasive procedure. That's my recommendation -- based upon too much personal experience:(

Take care and try to be patient with the meds. They DO work:)

LN2015 said:

I have begun experiencing jaw pain the last few weeks myself. I am recently diagnosed and have just finished my first ,month of mtx. I am discouraged and trying to stay positive. Reading similar accounts (even though your heart issues are the true worry) really helps me. Thank you for sharing.
14

That's great advice, Niel, I mean about not rushing into surgery. Yes, patience is important with the biologics. I was really lucky mine worked fast. LN, I had some jaw pain awhile back that went up towards my ear and sometimes above my ear. First my dentist looked at it and thought I had an infected saliva gland. He sent me to an oral surgeon, who said it wasn't infected but prescribed antibiotics anyway. I can't remember if I took the antibiotics or not--probably not, because of the oral surgeon's observations. The pain eventually went away, anyway. I've had so many aches and pains that lasted weeks or months and they finally just disappeared. I think, at least for me, that is the predictability (or unpredictability, however you want to look at it) of PsA. It's so annoying, and I feel that if I could listen to my "self-talk" all of the time, like Niel said, I'd be so much better off!

And, yes, I tend to brag about my parents. They came from a time when hard times were the norm. I think the comfy life we live today is so much different from the first half of the 20th Century when they really did walk three miles to school each day, or if it was too blizzardy they'd get a ride on a horse-drawn sleigh, grease sandwiches or if they were lucky, Karo syrup sandwiches for school lunch, outhouses and Sears catalog paper for TP......it was a very simple, if not impoverished life--my mom had. I'm sure glad we have the more comfortable life, but sometimes I think it made me a little whimpy. :-)

15

You need to get your PsA under control. I would doubt seriously that you ever had TMJ. So get thee to your rheumy as fast as you can get there.

That jaw pain is most likely related to your PsA. Your rheumy should order a chest/neck CT with contrast. I'm betting they will find a fair amount of inflammation in that area including many of the numerous glands, They will also likely find slight (or not so slight) dilation of the ascending aorta which can lead to the cardiac symptoms you are having. They will have to look carefully

All of these things are known co-occurring conditions of PsA. I'm dealing the same issues at this point, although I few more complications. Were I you if my Rheumy had ANY doubts, I would have her contact M. Elaine Husni at the Cleveland Clinic main campus for a consult. OR trip over there. You may well have to do the cardiac thing, but it can be simpler.

PsA is a systemic diseases, there are NO body systems excluded. IF you do not do everything in your power to control PsA with the most aggressive therapies available..... BAD THINGS WILL HAPPEN. There is no natural treatment that will make this thing go away. It will not rest, it will not go into remission. Fortunately most people suffer from some joint pain and inconvenience, THAT THEY MAY THINK IS LIFE ATLTERING, but they have no clue just serious this can really be. There is no way of knowing until it is too late if you are one of the people who have the really BAD forms of this disease.

You can recover from heart failure, but its not easy. Its so much easier to take your meds and fight the inflammation before it causes the problems.