Stephen... Remicade now...

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Tesscorm,
I know you want to find the source of the problems, but in the meantime acupuncture can be very helpful for both problems, especially since they are both new problems. I hope that you can get some answers and solutions soon.
 
It could just be an irritated nerve. Maybe he twisted his lower back and hurt a nerve, could be something as simple as getting out of bed wrong. Hopefully it will settle
 
theresad - no, not shingles... when it happened, he'd noticed small blisters/pimples and went to the ER dept at a small local hospital near his school. Very annoying how it all played out...:ymad: doctor only saw him for a few seconds, then, I think, forgot about him because he arrived at 10pm, at approx. 1am, dr assessed him for a few seconds and told him to wait. S fell asleep while waiting, waking at 7:30am! Went looking for dr, nurse came back and said dr was 90% sure it was herpes (only doubt in dr's mind was that he had no pain)! As you can imagine, he was very upset! I went to get him and took him to his GI's hospital (a large well respected hospital), two doctors assessed him (two, because the first dr could see how panicked S was about it and brought in his senior dr to reassure S), ran tests to reassure S but both said they were absolutely certain it was not herpes, that it was either molloscum or folliculitis. (Tests they ran came back clean.)

But, while both the previous and current issues are in the groin area, they are not the same... the molloscum/folliculitis were 5 or 6 small pimples over a larger area, didn't hurt, etc.; now it's just one specific area, one side only, etc. I really don't think there's any connection - I think it was just such a terrible scare to him at the time, he immediately jumps to that thought.

As far as injury, he doesn't recall a specific injury just before this started. However, it's not uncommon for him to have groin injuries from hockey. This isn't the same as the usual 'stretched groin' but certainly this could be a 'different' groin injury that affected his nerves??
 
What about thrush? I know in breastfeeding, it can be painful and irritating for the mom with no outward signs. Just a thought...
 
So (thankfully) very anticlimactic GP apptmt...

'rash' = jock itch :yfaint: GP said that although S couldn't see a rash, HE could... I imagine S must have been a touch doubful because GP finally told him that the reason S couldn't see the rash and he could was because he was the dr and S wasn't! :) But, he did say that the reason it has lasted so long is that he is having a hard time fighting it due to remicade/immune suppression. Prescribed a lotion. Hopefully, this will be the end of it!

And, blood pressure... 110/70! But think I'll be keep an eye on this... there were four tests (dentist, twice at infusions and the one I did) which were all consistently higher so, while I'm relieved this one was low, still questioning why four higher ones?? Time will tell.

So, just glad it seems like easy, simple answers!!! :D
 
White coat syndrome ...?
Gp he is familiar with I assume
But some folks have high bp at the doctors or dentists
I know Dh is Like that especially the dentist
The docs said white coat syndrome
 
I suppose white coat syndrome?? Needles or infusions have never bothered him but I guess there could still be some subconscious anxiety?? Well, his next infusion is in 3 weeks so we'll see what happens then. Not going to worry until then. (Of course, if my mom happens to bring her BP monitor over... :lol:)
 
Dehydration can lower blood pressure.

We are told what is the cause of the difference is K's blood pressure.
 
When Gus was on Remicade, he appeared to be doing well. At least his pain was well managed and his labs were good. There were no outward or diagnostic indications that the Remicade had become ineffective for him. We realized that it had stopped working at around the 18 month mark because the scope procedures revealed new inflammation and strictures. You would think the labs would show elevated markers, but in his case, they did not.

I hope S. does well with Remicade and that it remains effective for him for a long, long time.

Cheryl VT
 
Thanks Cheryl. So far, so good with S and remicade. :) Labs and scopes in March have been good so far. I pray it continues for a long time! As it's been a long time since his last MRE, I'm planning on asking if we can schedule another one at his next follow-up appt. Haven't been worried as most of his inflammation was at his TI, which was been seen by scopes but, previously, he did have inflammation extending beyond what scopes showed so... wouldn't hurt to make sure nothing was missed in scope.

There was a study that showed continuing with partial EN while on remicade increased remicade's success rate. S still drinks one to two Boost shakes per day - it's not nearly as much as the amount in the study (S drinks 250-500 cal/day, patients in study were taking in 1200 cal/day on average) but my 'sunny bubble, stretching the positive' perspective is that 1200 was the 'average' which means some of those successful patients were taking in fewer calories/day... :lol: IDK, in reality, it's probably no more than my little way of feeling that I'm helping remicade along! :blush: In any case, with him away at school for months and being a picky eater, at least it provides him with some nutrition. :)
 
Tess,
Good to know. I always just think about the EN as extra calories and nutrition, not as a facilitator for the meds. I will definitely keep it in mind for the future!
Cheryl VT
 
Wow, this jock itch won't go away. :( It is driving S nuts! He's been using ketaderm (prescribed by GP) for a month now and it's come back. It had gone away (or, maybe, mostly gone??) and S had stopped the cream (probably too soon??). But, he had his infusion over the weekend and the jock itch/sensation came right back! :( S thinks it's a reaction/side effect to the infusion - in the sense that his immune system was lowered and gave the jock itch a chance to come back.

He's going to finish up the cream and I'm going to try some home remedies I've read about (anti-fungal soaps, etc.) and see if that helps... if not gone in a couple more weeks, we'll have to ask for a referral to a derm. I'm worried that if it stays too much longer, it may eventually turn into something more complicated (infection, etc.). (Or that it's some other type of infection and not jock itch at all??)

Then, he's been having chest pain when he takes a deep breath (but not when playing hockey??). :yfaint: GP thought it was pulled muscle at apptmt last month but can't still be a pulled muscle. Went to a walk-in, they barely did anything but did listen to chest and said it was okay?? (He has no cough.) Somehow the thought of heartburn came up as that can cause my husband similar type chest pain - S decided to take some of his nexium (last few days) and chest pain gone. He's going to take the nexium for one week and stop. If the chest pain comes back, seems likely to be heartburn?? So, what's up with the heartburn? :( Stress from jock itch??

He's getting really frustrated. :(

On a positive note, his BP was normal at last infusion. :)
 
Get the dermo referral
Fungal infections and biologics are not a good combo
The dermo will know what to use to knock
It out before it becomes something other than an annoyance .
 
Agree with Mr Chicken on the derm better to knock it out quickly and make sure it's not something more problematic.

Hope the chest pains are taken care of by the nexium and it's just one of those weird fluke things we have to deal with
 
Yes, I agree derm is a good idea. It's like balancing on a fine line though...

S has been so cranky because of all this, he doesn't want to keep asking for time off (he's also taking an online course and needs time off for exams) so he keeps trying to 'fix' it (by using 'treatments' or going to walk-in clinics) and gets even more frustrated when it won't go away... and around and around we go. As much as he hates to miss school, I actually think it's easier for me to convince him to miss a class for an apptmt than it has been for me to get him to take time off work. :( And, of course, derm referral will mean two appmts - one with GP and then with derm. :ack: There are some things that are just easier to control when they are little... sigh.
 
Sorry to hear Tess. Poor Stephen :( being itchy and uncomfortable all the time sounds awful!!

It is SO much easier to pull them out of school when they're little. We're having that problem with my older daughter too - she doesn't want to take time off her job for routine appts.

Both my girls are on PPI's and have needed them for the last couple of years. I wish we could get them off them, but we just haven't been able to because they're on NSAIDs.

If he has issues when he comes off Nexium, he could try other OTC meds -- Maalox and Pepcid worked well for my girls. That said, if heartburn continues to be a problem, he should probably let his GI know and decide.
 
Skin is so tricky I wouldn't trust a walk in or GP. I would go with derm but even they a lot of times can't tell exactly what it is and just throw some broad spectrum cream at things. If you really suspect fungal, we use oil of wild oregano. Both topically and systemic. Two drops under the tongue and two drops in a carrier oil for topically...we use olive oil. But of course get the o.k. from your GI first...ours approves it.
 
About the chest pain--just chiming in that it could be costochondritis--inflammation in the joints that attach the ribs to the sternum. For some people it is so painful that they think that it could be a heart attack. It seems to be a common EIM. Acupuncture is good for this--some people even go on a few days of prednisone to settle it down. Palpating along the joints will usually give you the answer--it is excruciating. Keep in mind that these joints are normally quite tender when they are not inflamed.
 
Sorry to hear that your son is still dealing with this, but I'm glad that his BP was normal. I don't have any advice, but we're also dealing with what I think is a fungal infection, on E's scalp. She has a small red itchy patch on the top of her head, and she won't stop scratching it, so now I'm concerned it will develop into a bacterial infection too. It hasn't cleared up with a week of anti-fungal and anti-bacterial creams. We were just planning to show it to her GI doctor when we see her a couple of weeks. Do you all think that her GI will know how to treat it, or would a dermatologist be better? It seems like GI's must see a lot of this type of skin stuff with their patients.
 
pdx - any chance it could be psoriasis? There are a few members on here whose kids have psoriasis caused by Remicade. I would take her to a dermatologist if you can.
 
Second dermo is better
Lp has a lot of skin issues
The Gi always tells him you really don't want me looking at that
You want the dermo
 
pdx - could be the start of psoriasis. Biologics are used to treat psoriasis but some people have a paradoxical response and actually get the psoriasis. The scalp is a pretty popular place for it. However if it hasn't spread much and isn't scaly it could also be fungal. My younger daughter gets fungal patches in her scalp and believe it or not witch hazel or Listerine both help...love our derm.

You can start by having your GI look at it because yes they are very familiar with skin issues with IBD and biologics. O was seeing a derm and being treated for infected eczema when the GI saw it he knew it was Remicade induced psoriasis and he sent us to the derm.
 
@tesscorm I'm sorry - that's SO annoying! Fix one thing, and it creates another problem. It's like playing a game of whack a mole.

My son had a pesky cyst infection behind his earlobe that started in January. GI thought it could be folliculitis, referred us to the derm, and derm said it was an inflamed cyst - likely due to the lovely combo of the Imuran and Entocort. He took ABX, went away, stopped ABX, and it came back. Did that twice.

Then it returned again in July, right before he started Remicade, so now we're on the THIRD course of ABX since January. This time, Minocycline 100mg BID for 30 days. Derm wants to consider removing the cyst, but couldn't do it until the infection was gone. We have another appt next week to see where we are.

It sounds kind of similar to what's happening w/ your son - where you just can't get things resolved for good. I don't know what advice to give except I agree w/ others to go see the derm, who will know exactly what it is, and the best way to treat it. For us, I'm just hoping that once we taper Entocort (after his last loading dose) and can start to drop Imuran down, this thing will finally go away. IDK what's going to happen when he's done with this round of ABX, so we're on the wait and see plan.

My son is also now starting to get seasonal allergies (since starting Remicade), which is super weird and driving him bananas. I'm kind of afraid to add any OTC stuff on top of everything else he's taking, but he's trying to work part time, and is getting really aggravated with constant sneezing and runny nose. Yesterday he came home from work totally annoyed that he could barely get through the day.

On the chest pain, I wonder if a chest X-ray would be in order - if he's got a fungal thing going on elsewhere, maybe worth digging a little deeper to at least get some peace of mind on that front.

It is so hard to carry on with a "regular" life with all this stuff that happens. I really feel for these kids, they have to make alot of sacrifices and it's really unfair and hard also for you. Sending hugs and support your way.
 
Seasonal allergy meds should be an issue with biologics
Ds has severe allergies including seasonal allergies
Meds are a must and work well
 
theresad said:
@
My son had a pesky cyst infection behind his earlobe that started in January. GI thought it could be folliculitis, referred us to the derm, and derm said it was an inflamed cyst - likely due to the lovely combo of the Imuran and Entocort. He took ABX, went away, stopped ABX, and it came back. Did that twice.

Then it returned again in July, right before he started Remicade, so now we're on the THIRD course of ABX since January. This time, Minocycline 100mg BID for 30 days. Derm wants to consider removing the cyst, but couldn't do it until the infection was gone. We have another appt next week to see where we are.

It sounds kind of similar to what's happening w/ your son - where you just can't get things resolved for good. I don't know what advice to give except I agree w/ others to go see the derm, who will know exactly what it is, and the best way to treat it. For us, I'm just hoping that once we taper Entocort (after his last loading dose) and can start to drop Imuran down, this thing will finally go away. IDK what's going to happen when he's done with this round of ABX, so we're on the wait and see plan.
Click to expand...

My youngest is taking minocycline 100mg for cystic acne. It a 3 month course. She is also using a cream called Epiduo.
 
Ugh! Jock itch, what a pain in the….

I hope S can soon find some long and lasting relief, bless him. :heart:

Just out of curiosity, and not suggesting he is doing the wrong thing but, does he wear a jock strap and/or protective cup? If so and if he is laundering them do you think he is washing them thoroughly enough?

Dusty. xxx
 
It has to be so frustrating for these kids to have so many doctors appointments....and to have to ask for time off work is so difficult. I know it was the case for N this summer, so he finally said he would quit a week early and tried to schedule appointments for then....of course, that didn't exactly work out.

So sorry he is dealing with the jock itch....and hope you find a remedy soon!! About the chest pain, since it seems to be caused mainly when taking deep breaths I would think it is something muscular as happy said. That happened to me and it took a couple of months to resolve. But I think first testing with anti-acids to rule out heartburn is the way to go. I hate it that there always seems to be something they have to worry about. Let us know what the derm says.
 
Sorry for the delayed reply … just had a few things going on with my parents this weekend which turned my attention from S.

Happy – I did come across some info re costochondritis but this seems to usually affect the left side and, while S usually describes his pain as a general tightness when he inhales deeply, he does indicate a particular area on his right side. Not really sure where we stand with this now… one day or two, it seems better with the Nexium, the next he says it’s back. :thumbdown:

Now he’s feeling that the rash actually feels worse/burning when he uses the cream. :ywow: I couldn’t buy him antifungal soaps (you need prescription) but I bought Dove and Selsun Blue (read that both can help). Pharmacist said they won’t help but can’t hurt. He’s only used them a couple of times so far and says it feels better than when he uses the cream? So, for now, soaps and no cream… Because it felt a ‘little’ better, he wants to wait before make derm apptmt. (And, through all this… he says he still can’t see any visible sign of a rash, ‘maybe’ a bit pink if that! :eek:)

Oh, and re the jock strap – that was one of my first questions too! - hasn’t been using one for the last month or so. He’s been playing only ball hockey lately and only uses the protection with ice hockey.

He finishes work in two weeks, so one obstacle will be out of the way… of course, then he starts school. If all else fails, his next GI apptmt is September 20-something; we can mention the chest pain and can ask for a derm referral then and there!
 
Tess, M and S have had costonchondritis on both sides (and sternum pain). It did cross my mind when you mentioned Stephen had chest pain, but if Nexium made it go away I would've guessed it was heartburn too.

Both my girls have complained of chest tightness when breathing with costochondritis ("it hurts to breathe" is what they say). The tightness sometimes bothers them just as much as the pain.

Unfortunately, there's not a whole lot we can do for it - I'm guess NSAIDs are out? We use ice and heat and Voltaren gel (and they both take NSAIDs). If it's really bad, then pain meds.

Sorry to hear the rash is worse, it sounds miserable.
 
I'm glad his next apptmt is coming up! Contrary to how it may seem at times :lol:, I really am not a huge worrier when he tells me about 'one' symptom and I tend to let things go a couple of weeks (or occurrences) before really worrying but, it does begin to worry me when there are too many unanswered questions, one following the other... rash, chest pain, BP (even tho it was good last time), etc.

With your daughters, does the costochondritis just feel better after a some time?
 
Yes -- mostly. We have had to go to steroids other times, but in those cases they also had other joints flaring, generally hips, SI joints etc.

Some rheumatologists will inject the sore spots on their ribs with steroids. We've never tried that because both my girls think it sounds too painful.

The other thing that sometimes helps is Lidoderm patches. Numbs the pain for a little while. They're prescribed either by pain management or their GP.
 
S had his GI follow-up this morning - all GOOD! :D All lab results within normal range.

We're no further along in determining exactly what is causing the chest pain though. GI also thinks muscular or costachondritis. But, as S feels it is improving, GI said to just wait and see. If it continues/worsens, then he'll refer S to rheumo.

I mentioned in Clash's thread about the missing CRP/ESR numbers... GI does run them at every other infusion, but when I asked for the latest results, the nurse sent me the labwork from when S went to ER (re chest). Surprisingly, CRP is not always standard in ER labwork.

Interesting, GI did ask if S would be like to participate in a nutritional formula study of adults with IBD... I'd like S to do it, the more studies, the more we know about crohns! But, I need to get the particulars... with S being away at school, it may not be feasible.

Just a quick, good update! ;)
 
OMG, again, spoke too soon. :(

After GI apptmt, S had follow-up with cardiologist. At last cardio apptmt, S had an ultrasound and all showed clear. As cardio had not seen the original x-rays from ER (that had initiated the referral), he said while he was 99.9999% sure he wouldn't see anything on x-ray that he hadn't seen on ultrasound, to be 100% sure, he would review x-rays and schedule follow-up (today). I didn't go to cardio as it wasn't close by and thought I didn't need to miss more work just to have cardiologist say 'yep, as I thought, all good'. Well, now... cardiologist said given what he saw on x-rays, he did another ultrasound and now wants to schedule an MRI. :(

Needless to say, I'm so mad that I didn't go and now worried again about this. :( S is again worried and frustrated because it means more school missed, etc. We're supposed to be called within a week for the MRI apptmt....

:(
 
Hugs
Hope the cardio is just being overly through since he is rushing the MRI but not admitting and having one done today .
 
@Tesscorm, hang in there. Hopefully it's just a precaution and better to go through the additional test and cover all bases. I am sure it's so annoying to have yet another test to schedule. It's definitely understandable to feel frustrated. But PLEASE give yourself a break - you can't be everywhere, all the time - don't let yourself feel bad about not being at the appt. I admire you for stepping back and letting your son handle some things. Even if some times you're going to wish you were there. I need to learn to do that! It's a GOOD thing!
 
Bet if the cardio was as cute as the GI you would have been there :p

No I am not insensitive...just trying to make you laugh...but come on...it's true! Admit it!
 
I will hold on the 'not admitted, so not too serious' thought!! :)

And, two steps forward, one back in 'letting go'... it'll be awhile before he goes to an apptmt without me again! :yfaint: I specifically went to Gi apptmt because I wanted to talk about chest pain - just picked wrong doc!

And, CIC!! :lol: Had that been the case, then I surely could've justified a 'vacation' day! :ytongue:

S is so upset! Only thing dr told him was not to worry, he still believes all will be fine. But, I, on the other hand, have all kinds of instructions - absolutely no alcohol, no red bull (or similar), no sports, etc, etc. This is homecoming weekend! :( and his hockey starts up next week :(... he is not happy.

Trying to keep a lid on the worrying but it'll be hard over the weekend! I'll be texting him with every possible stupid excuse... just to be sure all is good! "honey, it's a little breezy here, how's the weather there?' :lol:

My dad is having leg angioplasty done Wednesday in preparation for having a toe amputated in the next couple of weeks. My mom will be hurt/upset if I don't take time to help her at home with my dad but, don't want to worry her by telling her I need to take time to go to MRI and follow-up... then hubby is having partial knee replacement in December so was saving vacation days for that... ugh, luckily my work is pretty decent but, seriously, when it rains, it pours! :ack:
 
Really sorry to hear this Tess. Fwiw, we've gone down the cardiologist road before -- M had a very high heart rate, sometimes irregular. They told us if they found anything in M's heart (they were looking for inflammation - pericarditis), they would admit her immediately. She had an echocardiogram that same day (no MRI though). Luckily, they didn't find anything and decided her high heart rate was caused by chronic illness.

Do you know what they saw on the x-ray? Or what they're looking for in the MRI?
Sending big hugs :ghug: hopefully the cardiologist is just being thorough.
 
Tesscorm, I hope the MRI goes well. I've been trying to check in since you first mentioned S's issues as C has had one doc and one nurse (separate locations, first school mandated physical second while in hospital after resection) hear a clicking sound on stethoscope but follow up with regular GP first time and surgeon second time both resulted in "I don't hear it" and not concerning. At least the testing may put his mind to ease, that's what I'll be hoping for anyway!

C has has like Maya!s M had tachy on occasion as well.
 
What they found on x-ray was enlargement of right ventricle. (Initially, Stephen told me 'inflammation'... not sure if I had mentioned it earlier.). ECG and bloodwork done at ER was normal.

When we went to cardiologist, they did another ECG and ultrasound. At the time, all was fine. Although cardio hadn't seen x-rays that prompted the referral, he'd said 'x-rays' were the most basic of imaging available for this and, while used in ER departments, aren't used for any dx by cardiology. Ultrasound provides much more detail than x-ray and ultrasound showed all was completely normal. However, although he was certain he wouldn't see anything contradictory, as he hadn't seen the x-rays that had started this, he was going to have a look at them, and confirm (today's follow-up).

But, now, for some reason, when S went today, they did another ultrasound and cardio said he'd like to follow-up with MRI. But, his heart rate was very good.

Unfortunately, I know nothing more! I have no idea what he saw. S says dr said his heart rate was good, dr 'felt around' and said not to sorry, he just wants to be sure but that he still felt all would be fine.

So, I'm flipping back and forth... thinking that I'm making a mountain out of a molehill as all other signs point to this being some glitch and then thinking 'but it's his heart!'... :ywow: Hopefully, MRI will be scheduled quickly! (Thank God school is less than two hours away... easily manageable.)
 
You have so much on your plate Tess, so you must give yourself a break!!! It is mainly the next appointment with the MRI in hand that will be the important one. Hopefully they will not find anything! Does he at all get out of breath or get dizzy? How frustrating it must be for him....but I hope he listens to mama!! Hopefully he will get the appointment soon, and hang on the the docs word to not worry. N also had to be monitored by a cardiologist for a couple of years due to an irregular heartbeat in the first year after diagnosis.

Hang in there Tess.....sending hugs.
 
So sorry that this remains unresolved. I hope that the MRI gives the doctors a clear idea of what's going on (and that it turns out to be nothing!)
 
Tess,
I am so sorry you are going through this now. Waiting is never fun but it really does sound like maybe the cardiologist is just being overly cautious. I do agree if it was something serious they would admit him for further testing. Anyway hope you get it scheduled quickly and things her figured out fast.
 
We have the heart tests done as well. They were order by a neuro. No MRI but ultrasound and 11 led echo.

Any dizziness or fainting with exercise?

It standard not to allow exercise or sport while doing testing.
 
"Unfortunately, I know nothing more! I have no idea what he saw." <-- this is so difficult for a mom and a situation that I can definitely relate to.

So many tests get done these days and often one test leads to the next one to follow up on an incidental minor variation, just to be extra careful.

Hope he gets the MRI soon and it ends up being normal!
 
Catherine - no dizziness, etc. He's had three ECGs so far (at ER and at both cardio apptmts - all were fine). This started in July and, until a couple of weeks ago, was playing on two hockey teams without a problem. He's mentioned 'tightness' but, he thinks the tightness is more a result of opening up his chest with a deep breath (ie muscular tightness or costochondritis)?? And, when we discussed with GI, before cardio apptmt, S said that it is improving, albeit slowly.

S says cardio did not say he should avoid anything (which surprises me too)?!?! But, I spoke with S and told him, while it's likely an unnecessary precaution, these are sensible given the testing. So, I've told him no alcohol, no red bulls (or other similar drinks - I don't think he drinks them but, just in case), nothing else 'recreational'! (again, just in case) and no sports!

xmdmom - ugh, neither of us had expected the appointment to go this way at all! If I'd had any inkling at all, I would've gone and, if I absolutely couldn't go, I would, at least, have prepped S with questions... But, I imagine, when the cardio said he wanted to run MRI, S was like a deer in the headlights!

And, I know you're right re the testing. I've been there myself - spot on mammo, led to HD mammo, led to inconclusive u/s by technician, led to dr doing her own inconclusive u/s, leading to MRI determining it was normal but 'denser' tissue! :yfaint: Over the course of 6 worrisome weeks! This thought is helping keep a lid on my worry! :) It'll be there until I know for certain but I also do think that it's possible the cardio is just being very cautious.

I just wish I knew what he saw on x-ray that precipitated this... although, knowing really wouldn't change much at this point.
 
Maybe he didn't see anything at all and that is the problem! Maybe the x ray didn't visualize the area he really needs a good look at. Maybe just maybe this is why he is ordering the MRI...because he doesn't feel comfortable releasing S until he absolutely see's the area he needs to.
 
That's exactly what I told S. Because that's exactly what happened with my mammo... mammograms showed 'something' but u/sounds didn't. Testing continued until they determined what it was. And, that's what I'm telling myself and what I told S. X-ray obviously has shown something but, possibly, ultrasounds are not seeing it?? I don't know enough about imaging and the differences between them to know if this actually makes sense but, for now, this logic is working for me. :blush:
 
Tess
Same thing happened here
Mammo saw something
But thankfully the place just sent you out and then a short wait to go right back in for ultrasound with a doc
No waiting a week and no tech
Still scary though
 
What a worry, definitely worth hanging onto not needing admitted. Better safe than sorry, not sure there's much more room in our brains for more worries crowding in! Hope the mri doesn't take too long.
 
Nothing yet. Left a message at office this afternoon but didn't get a call back. :(
 
MRI booked for Oct. 25. Pain hasn't changed. In the meantime, as it's more likely (I'm sticking with this thought!) that it's costachondritis, we're going with treating that for now. He started physio yesterday for an old shoulder injury and I told him to mention costachondritis. Therapist gave him some exercises for his chest - hopefully, he'll start to see improvement even before the MRI!
 
Is he using heat and ice Tess? We also use Voltaren gel, but he'd have to get his GI to approve that probably. Lidoderm patches are another option.

Both my girls have done PT for costochondritis. Sometimes it has worked, other times not so much. They do both have pretty bad arthritis though, so hopefully it'll work for Stephen.

Good luck!!
 
So now he's rehurt his already injured shoulder! :ywow: Said he slipped and fell Tuesday evening (hubby thinks he may have played hockey and didn't want to tell us :eek:). Either way, he said it sounded/felt like his shoulder popped out and back in?? Not sure it can happen exactly like that but, whatever did happen, it's now incredibly sore. Went to get sling, etc. Back at physio again today.

He'll be home for a week in mid October, he's going to see his GP and see about a referral to a 'shoulder' specialist. This injury just keeps happening... heals up a bit, for a while and then something injures it... hockey, weights, a fall, etc. Hubby thinks he may have to stop hockey :( or he'll end up with permanent damage. Hopefully, it won't come to that.

Wish he were home... I'd feel better being in control of all of this! :)
 
Tess,
A shoulder can pop in and out by itself. If it doesn't pop back in that is extremely painful and an emergency. If it keeps happening he may need to get it fixed surgically.
 
CIC - :rof: isn't that the truth?!?!?

Kim - Yes, that's what my husband is worried about. Other than the first time, when S had to go to ER to have it put back in place, I'm not 100% sure it's literally popped right out and back in?? But that is how S describes the pain/feeling/sound when it's been reinjured. I think this is the third time (at this severity) and is an area that gets 'sore/hurt' easily (which is why he had already gone to p/t earlier on Tuesday)...

We've never followed up with an ultrasound, specialist, etc., mainly because it would feel better and then S would want to 'wait and see' but, I think he's finally fed up with the repeated injuries.

Now to find a specialist near his school...
 
Getting so annoyed, so many runarounds and no answers.

Chest pain back! Never completely went away but was a bit better. Now S says hurts more than before. :( Said pain running across his ribs, towards his back (on right side) seems to precede worsening chest pain.

So, where do we stand with shoulder, chest, ribs, heart...?!?!?

Cardio follow-up tmrw, I'm still 90% sure it will not be heart-related.

S has gone to massage therapy for chest/ribs and shoulder. Therapist said she can feel inflammaton on two ribs. She had him do different movements, turning neck, etc., and she can feel his chest contract inwards at certain times. She believes he is compensating for his shoulder and it is causing the chest/rib pain. But would this cause inflammation (and can inflammation be felt?)?

S finally had x-ray done on shoulder but, by that time, the shoulder wasn't really hurting... so X-ray didn't show much of a problem. Report said 'some joint space narrowing', GP secretary/nurse said this wasn't an issue. (Anyone here know differently?? ie any association with arthritis, flare, etc??)

X-ray and referral sent to ortho surgeon but, because x-ray didn't show any/much of a problem, shoulder apptmt in Oct 2016!!! WTH?!?!? Called office, explained his chest/rib pain and that therapist thought it was being caused by shoulder. Ortho staff said they don't treat chest/ribs, even if the problem is caused by shoulder. Based on his x-ray, they can't book an earlier apptmt! And that we should speak with GP about a referral to a different specialist (didn't say which, we shud speak with GP)! Ugh.

(Makes it soooo much more complicated with S being out of town!)

So, need to make another apptmt with GP and get his thoughts (last time, he thought chest pain was muscle strain) and new referral. But to whom? Any thoughts? Rheumi?

At last GI apptmt, when S mentioned the chest pain, GI mentioned could be costachondritis (but he didn't examine S's chest in any way). Said if it didn't go away, he could refer S to rheumi. Should I just go with this? Or wait for GP apptmt? (GI referral is a phone call, GP apptmt is another trip home for S.) Could there another specialist other than orthopedic surgeon or rheumi?

I just want to find the right specialty! I'll go to as many drs as I need to but, it's so difficult and frustrating for S to make these apptmts from out of town! Of course, better safe than sorry but, already the cardio has been 4 or 5 apptmts (between follow-ups and testing). I would like to minimize apptmts with the 'wrong' specialty. At the same time, I want to get moving on this! S's chest started hurting in July and we're still only ruling out Possibility No. 1 (heart)!

I guess this is more just a rant! Just getting frustrated and I feel terrible for S because I know he's in pain and it seems we're getting nowhere fast!

But, any thoughts would be appreciated! :)
 
Before C's CD issues and subsequent dx he had an issue with his elbow. Since it occurred during baseball we went the orthopedic route. Nothing ever found, could do exploratory surgery if we chose. But it ended C playing baseball which he had done on a high level since 8.

I've wondered since his arthritis if this was possibly part of arthritis. His rheumatologist and GI think it probably was. He hasn't complained of that pain since starting mtx for CD.

I'd get the GI to give a rheumatologist referral, can't hurt. And if one of the other specialties finds a different causation you could cancel the rheumatologist appt.

It's so hard when you can't pinpoint causation and the experts leave you to play guess the specialty!

Hope things improve soon.
 
What a mess! And yes, I would go with the rheumi referral, at least as your next step. Good luck!
 
Definitely rheumatologist. He could have SpA - both my girls have lots of issues with their ribs.

Report said 'some joint space narrowing', GP secretary/nurse said this wasn't an issue. (Anyone here know differently?? ie any association with arthritis, flare, etc??)
Click to expand...

Joint space narrowing is common in arthritis...

I'd want to see a rheumatologist ASAP. Is there any way you can speed up appts?
 
Committee has spoken - will get rheumi referral. :) Spoke with S last night and he agrees as well, although I think he just wants to get on with 'something'. :(

He's really down and upset about all this. Says he can't enjoy anything - hasn't played hockey at all this season, can't play any other 'pick-up' sports with friends, can't work out at gym... something as simple as reaching for a book or moving a certain way hurts. :( And, he's unhappy that he's starting to gain some unwanted weight because he's not doing anything physical. He's really been dealing with one thing or another since May (first rash, overlapping with chest pain in summer) - you know how it is, frustrated with not feeling well, with worry hanging over him, etc. :( Broke my heart seeing him so down yesterday.

But, I tried to tell him, we're really no further behind... I expect the rheumi referral will be quicker than the ortho, so... really, instead of wiating for the ortho apptmt, we're really just switching specialists and will wait for the rheumo... but, I know, cold comfort.

At least we can completely rule out (I hope!!) his heart this afternoon (yes, cardio apptmt on a Saturday!) and I'll send email to GI this weekend. Hopefully, we can get rheumi referral quickly!

Thanks for your input - it's such a relief to know I can always get real advice and support here! :hug:
 
Where is the pain located? How long does it last when he gets it? How often does he get it? I saw "reaching for a book" caused the pain, and you mentioned "breathing" before.. I think. Are there certain things that he knows will always cause it?
 
My kiddos used to say "Mom it hurts to breathe!" when they had costochondritis. We used heat, ice, lidocaine patches and voltaren gel.
I hope you can get in with a rheumatologist quickly! Poor S, I'm sure all of this is very frustrating.
 
Nothing to add, just sending warm thoughts. It's so frustrating for these kids who would like nothing better than just live their lives without health worries/issues getting in their way! I once had costochondritis and it hurts like the dickens! I hope you get some answers from the rheumy soon!!
 
Tesscorm said:
Committee has spoken - will get rheumi referral. :) Spoke with S last night and he agrees as well, although I think he just wants to get on with 'something'. :(

He's really down and upset about all this. Says he can't enjoy anything - hasn't played hockey at all this season, can't play any other 'pick-up' sports with friends, can't work out at gym... something as simple as reaching for a book or moving a certain way hurts. :( And, he's unhappy that he's starting to gain some unwanted weight because he's not doing anything physical. He's really been dealing with one thing or another since May (first rash, overlapping with chest pain in summer) - you know how it is, frustrated with not feeling well, with worry hanging over him, etc. :( Broke my heart seeing him so down yesterday.
Click to expand...

I can really relate to watching as your kids get down. Last weekend it just broke my heart to hear J crying from the other room. Sometimes they feel like they will never get better.
 
Hope the rheumi appt can be made quite quickly. Hard when it's impacting every activity. Thinking of you both
 
xmdmom - he says it hurts when he turns his head to the right (it's his left shoulder that he dislocated and which causes on-and-off pain), whenever he bends over a bit and reaches for something, when he takes a deep breath (not regular breathing) and when he coughs. When he does any of these, says it hurts sharply and for a few minutes, then subsides to a dull ache. But, he says it happens numerous times during the day so it seems like he constantly in pain. Doesn't hurt when he's just sitting/lying still. Doesn't hurt when you touch area. Said it doesn't hurt any more or less after he's been still for a while (ie in the morning). Once it a while, his chest 'pops' and he said this brings relief. Also, while at massage, therapist was pressing down on his chest and he said it felt as if there was pressure there and if she could've 'pressed down more', that the pressure would have popped and he would have felt relief??

Maya - I told S about the lidocaine patches - do you need a prescription for these? He left right after cardio apptmt so we didn't have time to go look in pharmacy.

Carol - broke my heart thinking about you hearing J crying. :( I'm so sorry she's have such a tough, tough time. It is so very unfair. :ghug:


So, where we are now... cardio said his right side of heart is slightly larger, however, he said it's so slight, he believes it's just the way S is built. Doesn't think it's a problem and definitely not related to the chest pain. He did say he'll see S again in a years time, redo ultrasound, etc. but that he doesn't expect anything to change. And, no restrictions in his lifestyle (hockey, etc.). We did ask his thoughts on S's pain, he examined S's chest again, listened to his breathe a number of ways, and thinks muscular BUT... stressed it's not his specialty so not really giving an opinion. Told S to follow up with GP.

S wants to just go with rheumi referral for now. If there's time (ie if rheumi apptmt is in two or three months), maybe he'll book an apptmt with GP over the Christmas holidays and see what he says... (but, in the meantime, wants to move ahead with rheumi).
 
Oh, also, FWIW... he went to health store early this week and bought Fast Joint Care Plus (Genuine Health). He was told this would help help joint inflammation and lessen pain (with no nsaids) but it would take about 5 days to start working. Coincidentally??, he said the pain seemed a bit less today. But he also went for massage therapy 3 times this week and one or two hot yoga classes...
 
Our pain management doctor or rheumatologist prescribes Lidoderm for M.
I'm so glad that it's not his heart. Hope you're able to get into the rheumatologist soon! Can you ask to have him put on a cancellation list? That's what we do when trying to get in to see new doctors.
 
Where exactly is the pain located and is there any radiation of the pain?

I would think costochondritis should have pain on palpation.

The description above re: massage makes me wonder about trigger point pain in a chest muscle.

I think less likely would be a nerve related pain but usually there is tingling or numbness.

I found this
Another common cause of noncardiac chest pain is musculoskeletal problems located anywhere on the chest wall. The chest contains many muscles, bones, tendons, and cartilage (the rubbery tissue that connects muscles and bones). Strains or sprains to any of these areas can cause chest pains. Chest pains associated with musculoskeletal injury are typically sharp and confined to a specific area of the chest. They may be brought on by movement of the chest and/or arms into certain positions, and often are relieved by changing position. These pains can be triggered by pushing on part of the chest and often become worse when taking a deep breath. These pains usually last only seconds, but can persist for days.
Click to expand...
http://ubbmc.buffalo.edu/bmc_pain_treatments/noncardiac_chest_pain.php

Sorry I didn't look at all the posts but I was wondering what the rheumatologist was for.
 
Hmmm actually xmdmom is right - costochondritis generally does hurt with palpation, at least for my girls. But so does trigger point pain. My daughter has had trigger point injections in her neck and generally the area is very tight and sore. When pressure is applied it does hurt but it can also feel better (I know this doesn't make much sense).

xmdmom, we're recommending a rheumatologist because costochondritis is common with AS. My husband and both my daughters (all three have AS) have all had it, many times. Given that S is male, had IBD and is a young adult, it's worth checking with a rheumatologist.
 
The popping made me think of precordial catch syndrome.

"Although deep inhalation during a PCS attack will likely cause an increase in pain, many have found that forcing themselves to breathe as deeply as possible will result in a "popping" or "ripping" sensation which quickly and completely resolves the PCS episode." ..."It is speculated that it could be caused by the pinching of a nerve and may be due to spasm of intercostal muscles fibers "http://www.precordialcatchsyndrome.com/

I think a rheumatologic issue is an unlikely cause given the description but this is my personal opinion (not medical advice!).
 
When S turns his head to the right, he can feel pain/pull about an inch or so below his collarbone, on right side. And, the rib pain, which I think happens when he turns his neck and/or reaches out, runs along his right side ribs, about mid height of ribcage, towards his back. Keeping in mind that the chest pain 'flares' do lessen at times (ie worse in August, improving in Sept/Oct, worse now) - he said, thinking back, he's realized the rib pain precedes the worst of the chest pain by a few hours or day. He noticed the tightness/rib pain on last Friday, Saturday/Sunday his chest pain was much worse (along with ribs). I asked him about back pain but his answer was very vague 'IDK, maybe a bit, sort of', so I'm thinking there's not much back pain. The chest pain seems to be general pain across most of his central chest, ie sternum area.

Couple of other comments from therapist - massage therapist said she felt the rib inflammation and that she could feel his ribs extend/shift outward and his chest area contract inward when he moved his turned his head to the right. This didn't happen when he turned his head to the left. As he dislocated his shoulder two years ago and it's been an on/off issue, she thought two years of compensating/adjusting for shoulder pain could have gradually caused this rib/chest issue.

Trigger points... can they be felt by therapist? Like a knot? Massage therapist said she felt that his chest/ribs felt 'better' when he went for the second and third apptmts.

Maya -
When pressure is applied it does hurt but it can also feel better
Click to expand...
- although S said touching a specific point doesn't hurt, I think your comment is similar to what S said about additional pressure by therapist would have brought relief??

xmdmom - at S's last GI apptmt, he mentioned the chest pain but it was when his pain seemed to be improving. GI mentioned costachondritis and offered to refer to rheuma if the pain worsened or didn't go away. Re PCS - I just quickly read your link but, I don't think that's it. S's pain doesn't completely go away and it feels better when he's lying down or sitting.

I can see the similarities with AS and/or JSpA and certainly the connection with crohns, etc. so I don't want to stick my head in the sand about this but I can also see so many symptoms pointing to a muscular issue! :ywow:

If the therapist is correct and this is all being caused by compensating for his shoulder and not arthritis, would this cause inflammation? And, if yes, would a rheumatologist be able to treat this?
 
Compensating for an injury can cause muscle imbalance and strain and cause trigger points (and these can be felt by a physical therapist or a massage therapist). Trigger points feel painful and also better when pressed depending on the pressure. I wouldn't imagine that an inflamed joint would feel better with pressure.

(I read that there can be a dull pain following the sharp pain of the precordial catch.)
 
I want to add my thought that he could have a pinched nerve from the dislocation reduction. There are lots of nerves that go through that area, and nerve injury is a risk of reduction. Have you considered a chiropractor?
 
I'd get it checked out by someone - a rheumatologist or an orthopedist. An orthopedist would be able to tell you if it's an injury and if not, they'd likely refer you to a rheumatologist. Alternatively, you can go the other way and go to a rheumatologist first.

I don't think anyone can tell you for sure that it's a rheumatological issue or an orthopedic issue just by reading about his symptoms (unfortunately!). I think you just have to decide which you think is more likely (or which appt. you can get faster ;) ) and go from there!

Some of the stuff you say does sound like trigger points (read up on Myofascial Pain Syndrome) and other things sound like costochondritis. It could also simply be a muscle issue from compensating for his shoulder (though I would expect a PT to pick up on that).

Does he have any other symptoms of AS? Stiff lower back? Morning stiffness? Stiffness or pain when trying to sit for a long time (for a movie or a class, for example)? Pain that gets better with activity? Any redness, swelling or pain in other joints?
 
Well, since apptmt with orthopaedist is a year away :yfaint:, I imagine it'll be quicker to see rheumatologist! :) I did try to get on cancellation list for ortho but was told there were 200 names! I think, because his shoulder x-ray didn't show a problem, he's probably a low priority call up. But, from what secretary said, they don't 'do' chest and ribs anyway.

Maya - I've specifically asked him about back pain and morning stiffness, his answer was 'no', other than his vague answer about his back today. No other joints affected. But, yes, he does feel his chest/rib improved when he played hockey in the summer (pain wasn't as bad at that time though) and from yoga.

xmdmom - yes, totally understood you weren't saying no rheumatologist. :)

Carol - S did ask about a chiro. My worry was that it could worsen the problem if we aren't completely sure what's causing the pain. If it is costachondritis, manipulating the sternum/joints might worsen it??? If I can get a rheumi apptmt soon, hopefully, we can rule out (or in) the costa and then see if a chiro is the right fix.
 
Oh, btw, just to add a bit more grey... S also separated his right shoulder three years ago... perhaps I'm focussing on the wrong shoulder completely! :yrolleyes: I've assumed a dislocation is worse than a separation but, just crossed my mind... I could be completely wrong! :facepalm:

:)
 
I know with AS going to a chiropractor is definitely NOT recommended, especially when the spine is involved. I don't know what the recommendations are for muscle problems or injuries though.
 

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