New pain across my clavicles, through shoulders and into my arms

General
1

I've been hoping this isn't a new PsA symptom, but I'm worried Enbrel is slowly losing its effectiveness. Off and on I've had a day or two of a minor flare, but not more than that. I have lots of pain in my feet, but that doesn't feel like my PsA pain felt before I started Enbrel. This recent pain feels more like inflammation, and I've had it for about 10 days straight now. :-( I'm taking Ibuprofen every day now, and it helps relieve this new pain somewhat. The pain goes across my upper body, just below my neck, across my shoulders and down my arms--mostly my left arm. The past couple of days it sometimes goes into my hands, making them feel sore, tingly and stiff. My right hand has slight swelling. I've also had some random sharp, stabbing pains in various muscles over the past few days.

I messaged my internist and rheumy. Without seeing me, my rheumy doesn't think this is a PsA symptom or that my Enbrel is fizzling out, he wants me to see my internist. IDK what to think, other than if it's not PsA, what is it? My internist will either want to do some heart/circulation tests or prescribe pain meds.

I don't feel anywhere near as bad as I did 2 years ago when I started Enbrel, but this does NOT feel like anything but inflammation. It would be so disappointing if Enbrel stopped working, but I know many of you have had this happen and you've done well switching biologics.

2

Hi Grandma J from your twin across the pond. Okay, that's not to say I'm having exactly the same symptoms as you, but boy are they similar! I am having a lot more pain. It's often at its worst by lunchtime to the extent that I could just plain cry into my sandwich. Like a misery vest across shoulders, down back, arms & backside. Forgot to mention legs. Weirdly, the feet are a little better most days.

Big difference is that nobody's mentioning my heart. I realise you so need to get this possibility checked out. For me what is going on is PsA, I'm maybe 90% sure. Occasionally I wonder about fibro but I think it more likely that tendons are kicking off, or rather the entheses I suppose.

My last rheumy appointment was a bit pathetic really. It was my first one for 8 months, there had been an unavoidable delay apparently. And most of that was spent discussing what happens when I move house to another CCG (health authority). I was there all of 20 minutes, he noted that I have a fair few tender joints and my left knee is a bit swollen again and his verdict was that my PsA is 'reasonably well-controlled' where it used to be 'very well-controlled'. I did not really lay it on the line about the pain enough because I forgot to take my brain with me.

So what is going on eh? For you? For me? I assume that PsA, being a progressive condition, may worsen even when a biologic is working adequately. Presumably the deterioration would happen more slowly than without the bio. Or perhaps Humira is failing for me and Enbrel is failing for you. I rather suspect that would mean a tough few months at least between considering the possibility and waiting to see if it is indeed the case. And then starting a new one and more waiting ....... Oh my.

Well I reckon you should see your internist ASAP. Get the process started. I hope there are no heart or circulation problems.

I think another thing you & I have in common is that we've both been delighted by how incredibly effective our biologics are. But realistically I note that for many others, while the biologics may still be game changers, pain and fatigue etc. remain significant.

I'm not going to attribute your symptoms to stress 'cos I'm fed up of people suggesting my probs are stress-related. When I achieve Nirvana I may feel a whole lot better of course but I'm sick of waiting! Good to hear from you even though it's not the best time ever.

3

I found Embrel is not as effective as it was. I changed to Humara but that didn’t work as well as the Embrel. This month I’m starting on a reasonably new injection called Stelara and hoping for the best. Stelara is only injected dvery three months I believe.

4

Hey sista! I don't like it when they say it's stress, either, because I think what they're really saying is it's all in my head. And if you want to tick me off, just tell me my pain is imaginary and my blood boils! BUT, I am pretty sure stress does make me feel worse, and lately my job has been really stressful for a number of reasons, and I'll be working full-time for 4 - 6 weeks starting August 15 when Fall semester begins. I've noticed, too, that any time I worry or get upset about something my shoulders ache more. I just hate going to the doctor, but I know I should. We're going on vacation for a few days starting Wednesday, and we'll be relaxing at a lake 'up north' so I'm hoping that'll help. No stress up there!

I hate to hear you're in the same boat. You have had a lot with selling your house and stuff. IDK what I'll do when that day comes. And considering the condition my husband and I are in, I don't think we'll last in this two-story house (plus my laundry room is in the basement) for too many more years. The yard is huge, so much mowing in summer and snow blowing/shoveling in winter. The thought of leaving this home that I helped build and where our kids all grew up makes me so sad. I know it's just a house, but I don't see it that way.

Anyway, we have plans of hiring the older grandkids in the upcoming years......

If our biologics are failing, maybe you should try mine and I yours!? Except for what Jamie replied--I think I'll be the most depressed person on earth if Enbrel does fail and I switch to Humira, only for it to fail, too!!! Enbrel was a huge game changer for me, and I got spoiled feeling so good for awhile. Then, I remind myself how 'not good' I've felt, really since my feet never stop hurting and my back is so touchy, plus my ears ringing so annoyingly loud But, being free of all the inflammation I put up with for so long was sooooooo nice.

I have a few extra Enbrel injectors. I might give myself an extra shot for the next two weeks. Or, I'll save them in case my rheumy does decide to switch biologics.

Ugh, Jamie, that sounds disappointing. I hope the Stelara works for you! But, ugh, I dread biologics that last three months. So what do you do if there are SEs or if you're allergic?


Sybil said:

Hi Grandma J from your twin across the pond. Okay, that's not to say I'm having exactly the same symptoms as you, but boy are they similar! I am having a lot more pain. It's often at its worst by lunchtime to the extent that I could just plain cry into my sandwich. Like a misery vest across shoulders, down back, arms & backside. Forgot to mention legs. Weirdly, the feet are a little better most days.

Big difference is that nobody's mentioning my heart. I realise you so need to get this possibility checked out. For me what is going on is PsA, I'm maybe 90% sure. Occasionally I wonder about fibro but I think it more likely that tendons are kicking off, or rather the entheses I suppose.

My last rheumy appointment was a bit pathetic really. It was my first one for 8 months, there had been an unavoidable delay apparently. And most of that was spent discussing what happens when I move house to another CCG (health authority). I was there all of 20 minutes, he noted that I have a fair few tender joints and my left knee is a bit swollen again and his verdict was that my PsA is 'reasonably well-controlled' where it used to be 'very well-controlled'. I did not really lay it on the line about the pain enough because I forgot to take my brain with me.

So what is going on eh? For you? For me? I assume that PsA, being a progressive condition, may worsen even when a biologic is working adequately. Presumably the deterioration would happen more slowly than without the bio. Or perhaps Humira is failing for me and Enbrel is failing for you. I rather suspect that would mean a tough few months at least between considering the possibility and waiting to see if it is indeed the case. And then starting a new one and more waiting ....... Oh my.

Well I reckon you should see your internist ASAP. Get the process started. I hope there are no heart or circulation problems.

I think another thing you & I have in common is that we've both been delighted by how incredibly effective our biologics are. But realistically I note that for many others, while the biologics may still be game changers, pain and fatigue etc. remain significant.

I'm not going to attribute your symptoms to stress 'cos I'm fed up of people suggesting my probs are stress-related. When I achieve Nirvana I may feel a whole lot better of course but I'm sick of waiting! Good to hear from you even though it's not the best time ever.

5

I learned so much about PsA and its treatment in the early days. But now I'm at the stage where more questions are arising. The one about how we know whether or not a biologic is working is one of them and I doubt there's a clear cut answer. Over here in the UK, assessment for starting and continuing biologics seems to focus predominantly on swollen / tender joints. Pain comes into the category of the patient's own assessment of their condition I think. And of course that then depends on how a rheumy responds to the patient's self-assessment.

On balance I would assume that Humira is still working adequately for me. I have sufficient tender joints to argue that it is not working but over and against that I have good energy levels most days and, importantly, my mobility is pretty damn good still. I wonder whether experiencing more pain, at least for periods of time, is due simply to just having had the disease a long while? Incidentally, does your backside hurt? Currently my PsA is literally a right PITA. Which is a bummer (pun intended) as I really enjoy sitting down and would like to do more of it.

6

Hi GrandmaJ, sorry you're not feeling so great. I had a horrible time a way back with pain in those areas, although mine was worst down my right arm. And the tingling as far as finger tips, yes, had that too. Turns out I had, thanks to PsA, massively inflamed soft tissues throughout the shoulder resulting in impingement and bursitis. This was way before I started on Simponi so needed a horses dose of depo-medrone and lignocaine injected in to the bursa and around the joint and that settled it, I kid you not, within hours after weeks of the worst pain ever. BUT I did have a bit of a flare-up in that shoulder only a week-ten days ago, it put me in a complete tailspin for a couple of days. I got by with ibuprofen and icing but it still feels "delicate" so I'm taking care not to overwork the shoulder. Ultrasound was what was able to identify the inflammation, where it was and where the needle needed to go!

Have you been working too hard in your house and yard, playing with those lovely g/kids this summer? I think we (I certainly do!) forget that PsA flares aside, our bodies are still susceptible to inflammation caused by over-use and physical stress on the musculature etc ..... such as you get packing a home up for moving, Sybil!

Hope you both feel better soon. Stay positive about the Enbrel.

7

First, Sybil, I do feel the same as you in that my biologic is certainly doing some good--a lot of good, actually. If I compare the weird off and on pain/discomfort I'm having in my upper body and the constant pain (to different degrees) in my feet to the constant overall sick feeling I had from PsA two years ago--add to that the weakness and fatigue--well, there's no comparison! I do think I am becoming a bit of a wimp. However, the pain (it's really not hard, sharp pain--but it is intense, if that makes any sense at all) is actually scary sometimes. The ibuprofen I took during the night wore off towards noon at work and I got really uncomfortable! I almost left work to rush to the doctor's office. I swallowed two Excedrin and in less then 1/2 hour I felt better and the pain hasn't come back since! (It's 9:30 p.m.). I'm thinking my rheumy is right. It does feel how my PsA felt in my shoulders, but this goes across the top of my chest by my neck and usually down my left arm. I've had heart tests in the past. At one time I was told I had a mild heart attack. Years later, after my EKG went back to normal, I was told I never had a mild heart attack. Doctors aren't always so sure of themselves. It's to where I think, why bother going in--if it's some weird bug it'll go away eventually, if it is my heart it will get worse and hopefully I'll go in on time.

So, Sybil, it's your bum that's giving you trouble? Ugh that's not fun! Mine only does that when I sit in a car for too long. Will an ice pack help? I'm glad your Humira is still working. These little problems we have are probably just growing older pains or something! :-/

Jules, I haven't been doing anything different, but I can say my job has gotten terribly stressful. To the point that I almost hate the job that I've loved for 16 years. All because our student workers this year are a bunch of idiots (except for one). It has made it very difficult to perform my job because their mistakes get in the way. I'll leave it at that.

The pain I'm having isn't the kind of pain a person would get an injection for because it's not one specific spot, but an area of what I'd call intense discomfort.

I was thinking today, though, that I'm probably very annoying to some people here who are having tons more pain and unable to get it under control with biologics.

Sometimes I feel like here is the only place where people understand and we have comradery because we're all in the same boat!

8

Hi Grandma J! What a worry this must be. Little is scarier than feeling unknown pain that can be suspected as a major organ issue. Curious have you ever had neck problems? You know all about my rib issues which were the path to my diagnosis but my doctors all concluded my shoulder pain and pain down my arm that would often make my fingers tingle and swell were a result of nerves being pinched in my neck. My MRI shows damage there but I had zero pain for years in that area. I know the damage was caused by auto accidents years earlier but so odd that I could have pain down my shoulder and arm but not any where it was originating from. I still question that considering the severe entisis and swelling in my rib cage, IDK but an idea to think about.
I get the same way about avoiding doctors when we can usually predict that they can’t fix us. I have been avoiding them myself with the exception of myfour day unable to walk spell an month ago. Then I yell at myself in my head about how stupid I was to wait until I can’t walk to take an hour of my time and spend less than $50 on myself, lol!
I would not call you a wimp by any means. I think PSA has made us more aware or vigilant of what is going on and when we notice things that are not normal it becomes harder to shrug off when we know how bad it can get at any random time. We evaluate our med responses, stress levels, darn near everything and that can make us concerned if not stir crazy trying to control the outcome.
I question the effectiveness of Humira all the time but like everyone else said I know its working but it becomes a question of whether it’s enough. I remind myself often how much better i am then i was when first diagnosed and the months my first bio didn’t work. Thankful I can still work and recently that I can still walk ok again. We all do have so much in common that you should never feel like any questions are not worth asking about. Take care and let us know what you figure out.

9

Aw, thanks Rachel! You guys are all so understanding, IDK what I'd do without you!
I think you may be correct in that it's originating from my neck. I had a neck MRI a few years ago and there were bulging discs. I had some pain and quite a few months of P.T. I'm pretty sure I had a whiplash on my 40th birthday, tubing behind a boat. But the pain I had was different than now. I do think, though, you may be right--I hope you're right! It's scary thinking it could be my heart. My sister and brother both had heart attacks. My sister really scared me when she said she had unusual random pain down her left arm for a couple of weeks before her heart attack. She said it would last about 15 minutes. When the heart attack finally happened, she knew it was serious because the pain in her arm was really intense--like pressure and she was sweating and felt like passing out. She's a whole different personality than me, and nothing phases her!!! They both had angioplasties.
I only had one episode today, and it went away after I took Excedrin. My doctor could see me tomorrow afternoon, but we're going to the lake on vacation tomorrow. I'm just gonna hope it's my neck. There's a hospital about 20 miles from our cabin, I'll have two nurse daughters on vacation with me--they'll rescue me if I need them to! (I hope!)
Rachel, I'm glad you're feeling better. I hope you're doing a lot of fun camping and stuff with the kids!

10

I just got back from 4 days at the lake relaxing with some of our kids and grandkids. I've still had the "pain" off and on, but I feel more satisfied that it's coming from a bulging disc in my neck rather than my heart.

This sounds weird to a lot of people, but I dread doctor visits for several reasons (waste of time and money mostly), money being a huge factor as my insurance has been horrible, and if it is nerve pain, P.T. could help but at what cost to me? I guess I'll try the neck exercises I've used in the past for starters. If that works--voila, problem solved!

My job is going to be stressful these next few weeks with school starting soon and training in 3 new student workers, so we shall see how things go. I'm crossing my fingers and trying to be positive, which is not easy considering our track record this year.

11

Relaxing at the lake sounds ideal! Glad you feel that you're getting an angle on what's happening.

The money factor does not sound weird to me at all. On another forum I took a look at, a woman in the States posted her bill from an ER visit (there was a dispute over insurance). I nearly fell off my chair. Seeing as PsA fluctuates so much I don't go to the doctor or phone rheumy nurse unless something bothersome lasts a very long time, plus of course I'm often not sure that they could do anything to help anyway apart from painkillers. You're sensible and I'm sure you'll keep an eye on this and not take any risks with your health though. That's the bottom line I suppose.

I'm willing the student workers to be quick learners and a joy to work with! Could happen!

Grandma J said:

I just got back from 4 days at the lake relaxing with some of our kids and grandkids. I've still had the "pain" off and on, but I feel more satisfied that it's coming from a bulging disc in my neck rather than my heart.

This sounds weird to a lot of people, but I dread doctor visits for several reasons (waste of time and money mostly), money being a huge factor as my insurance has been horrible, and if it is nerve pain, P.T. could help but at what cost to me? I guess I'll try the neck exercises I've used in the past for starters. If that works--voila, problem solved!

My job is going to be stressful these next few weeks with school starting soon and training in 3 new student workers, so we shall see how things go. I'm crossing my fingers and trying to be positive, which is not easy considering our track record this year.

12

I always (with more success sometimes than others) compare a flare when on Biologics (the commercials don't tell us they can still happen) to a flare before the biologics. Its almost always reassuring. Remember the bios are damage preventing not pain meds...... Yes they do fail from time to time. but failure isn't a flare or a new symptom unless its accompanied by the old symptoms..... I'm far away enough from the old days I forget just how bad they were (although I did find my wheel chair in the garage. last week.....) The battle is ongoing and NONE of us are getting younger - something else we forget. Bios aren't anti-aging meds.

13

Sybil, I definitely agree that I'm sensible *wink*. I am sensible in that I think things through--unfortunately, "over think" is more like it! Thank god I have a very understanding internal medicine doctor and rheumy. I've had these two doctors for about 10 years and they know me and are okay with my hesitations.

Tntlamb, I'll be 63 in a few weeks, and I am feeling my age. It is true, we aren't getting any younger and we can expect a certain amount of stiffness and creaky joints. I do try my best to ignore those age-related symptoms, but I'm sure recognizing my limitations and, really, it's something one needs to learn to accept. It's hard when I have a mom who had more energy at 82 than I have at 62, and my supervisor at work who's 14 years older than me and has no health problems at all.

I've got to try harder to control my worrying! The pain I was having has been way less the last few days and I'm sure it helped to be on vacation with my happy family. We had the best time ever--lots of laughs--and the fishermen/women caught around 100 sunnies and crappies!!!


Sybil said:

Relaxing at the lake sounds ideal! Glad you feel that you're getting an angle on what's happening.

The money factor does not sound weird to me at all. On another forum I took a look at, a woman in the States posted her bill from an ER visit (there was a dispute over insurance). I nearly fell off my chair. Seeing as PsA fluctuates so much I don't go to the doctor or phone rheumy nurse unless something bothersome lasts a very long time, plus of course I'm often not sure that they could do anything to help anyway apart from painkillers. You're sensible and I'm sure you'll keep an eye on this and not take any risks with your health though. That's the bottom line I suppose.

I'm willing the student workers to be quick learners and a joy to work with! Could happen!

Grandma J said:

I just got back from 4 days at the lake relaxing with some of our kids and grandkids. I've still had the "pain" off and on, but I feel more satisfied that it's coming from a bulging disc in my neck rather than my heart.

This sounds weird to a lot of people, but I dread doctor visits for several reasons (waste of time and money mostly), money being a huge factor as my insurance has been horrible, and if it is nerve pain, P.T. could help but at what cost to me? I guess I'll try the neck exercises I've used in the past for starters. If that works--voila, problem solved!

My job is going to be stressful these next few weeks with school starting soon and training in 3 new student workers, so we shall see how things go. I'm crossing my fingers and trying to be positive, which is not easy considering our track record this year.

14

Hi everybody! I really thought my weird pain was nothing but weird PsA pain–radiating from my damaged neck, and I was happy to think this discussion was over.

Until today…

I left work at 11 a.m. to bring my granddaughter a get well balloon because she had her tonsils out this morning. Driving back to work I started having pain in my neck and upper chest. It got to the point of being really uncomfortable so I called my nurse daughter.

Long story short, I ended up in the ER and a CT scan of my heart showed plaque building up in my arteries so now I’m overnighting at the hospital and tomorrow I’ll have an angiogram and possible angioplasty and stents!

I’m wondering if anybody out there has had the procedure and how it turned out. If I need stents I’ll have to go on a blood thinner, cholesterol med and two blood pressure meds.

I’ll let you know tomorrow how it turns out. Crossing my fingers it’s not bad and I won’t even need stents. This is sort of scary!

I hope you all are having a good week!
P.S. This hospital bed is the most uncomfortable bed I’ve ever slept on…only good thing about it is it’s clean!

15

Oh grandma J, I'll be crossing fingers & toes & trying to keep up with how you get on (we're moving around a lot at the moment). I bet it is one of those procedures that is much worse anticipating than actually having done and hopefully you will not need stents, but it is scary, of course it is. At least you don't have to make that bed .... or do any damn thing right now. Have you got magazines .... books? Thinking of you my friend, chill as much as poss & keep us posted if you get time.

16

OMG, Grandma J!!!!!! But I'm glad you're in the best place and the docs are being thorough. Whatever todays outcome you are in my thoughts. Let us know how you're doing when you can.

A friend of mine had that procedure and is now doing really great, back to being fit as a fiddle, although he whinges about having to take pills ... before then he'd never so much as taken a pill for a headache.

Thinking of you and wishing you all the best for today. Jules

17

Oh Grandma J, I am so sorry you are having all this happen but glad you took the initiative to have it checked out. My sister has had stents put in and had great results. She leads full life, works more than full time and her only woes are occasional fatigue and yes pills. I would do your best to go with the flow and be as open as possible to your doctors recommendations and the meds (yes I know that one will be hard to swallow, no pun intended). There is so much more knowledge and treatments available in the cardio world compared to PSA or autoimmune diseases that should trust in your care team. I know your scared, 100% normal reaction, but what is scarier is having done nothing! I consider you a good friend with all our personal messages and I think the world of you! I will hope for the best outcome posspossible…take care and remember were always here for you!

18

Grandma J ... what can I say, except that I am SO GLAD, SO VERY VERY GLAD, that you are in a safe place getting good treatment. So, I guess you found out what that clavicle pain was. {{shaking head}} Who'd have thought?

Being on the older end of the spectrum here at LWPsA, I know plenty of people who've had the stent procedure done. The story is always the same: they get the stent(s), they turn a lovely healthy colour, and they feel terrific. I've never heard anything different. So here's hoping that your experience is exactly the same and that you are back up and running very soon. As for the meds ... you know what we say here, fear the disease, not the drugs! LOL

Come back soon and tell us how you are. And as Rachael says, we're always here from you. I decided to spend some of Ben's budget on these, just for you:


19

So sorry to hear about this unexpected turn! Will be thinking good thoughts for you and hoping you get back to full fitness soon … Even if you end up on the Meds it’s not so bad - another thing to remember but I always try to think that these things are working to keep us healthy xxx

20

Thank you so much everybody! And the balloons,Seenie! I lived through it. It took about 1.3 hours, got one long stent and one artery roto-rootered. I have a picture of it I’ll share later after I go home. The blockage was 90% and the doctor told my husband it would have eventually caused a heart attack. Love you guys here! I even told my family how to get in touch with the group if something terrible happened (not common,but sometimes there are bad results). It is scary but I stayed awake with mild sedation.
One thing if any of you ever have this, it hurts some when they do the ballooning. I guess the arteries don’t like being stretched. Sort of felt the same as my pain yesterday that led to this.
I better go–visitors and nurses. And now I can relax and enjoy the rest of my stay here!
Thanks again, my friends!