Cushing's syndrome

[Hollaka79]

Me again. Still haven't quite figured out where I'm meant to post & how it gets seen so I'm hoping I'm posting in the correct category?! Anyho. As some of you know I've been battling a crohns flare for a while now. 2 hospital admissions & ive finally started the humira. I have been on & off steroids since august last year & been on consistently since April. I haven't been able to drop below 30mg due to flaring each time. About 6 weeks ago I started getting other symptoms which were new, at first I thought just side effects of steroids but gradually got sicker (my crohns wasn't too bad as was on the peer). Saw my GP who noted sugar in my urine & I was tachycardic. Got me doing blood sugars & a pattern of high sugar was forming. Saw another GP who happens to specialise in endocrinology & she wanted to test me for Cushing's syndrome given the amount of time/dosage of steroids I've been on. Well today after doing several tests she called me confirming I have Cushing's & has done an urgent referral to an endocrinologist & says they need to check to see if I have any tumours. I'm still on 40mg of pred & obviously the best option is to reduce the pred but then I run the risk of flaring (hopefully the humira kicks in soon as had two doses now). My GP is also concerned about my bone density & wants to start me on biophosphates to prevent fractures but reading up on that I see it causes stomach issues & that's the last thing I need.. Has anyone else been diagnosed with Cushing's or had issues with blood sugars or taken biophosphates? My head is spinning with it all & I feel so ridiculously unwell that it's a battle to get up each day. I have two young children (single mum) and they keep me going but I'm honestly freaking out as it just seems it's one thing after another at the moment... Oh & add to that I have a fissure & can barely sit down right now - Dr prescribed me steroid cream so hope that helps as Lordy I forgot how much they hurt!! All in all a rough day. Rant/ questions over

 

[Jabee]

I believe Maya142 has a daughter who was recently diagnosed with Cushings. It sounds like you're having an awful time. Has your GI considered adding Methotrexate with the Humira? That can give the Humira a strong boost and help prevent the formation of any antibodies.

I hope you feel better soon.

 

[Maya142]

I do! I have been meaning to respond, sorry.

She was diagnosed after years on and off steroids. She had the puffy round moon face, gained about 15-20 lbs in two months, had purple stretch marks on her belly and thighs and a flushed face. As a 20 year old, she was NOT HAPPY about it!

We were sent to endocrinology who diagnosed Cushing's. They said since she had been on steroids for the last 6 months (Pred for 6 months, Entocort for over a year), there was no need to look for tumors, because it was clear the cause was not a tumor on the pituitary or adrenal glands -- it was the steroids we had been giving her!

She was not on as high doses as you are - we did start out at 40 mg, but tapered quickly. I would say most of the time she was around 15 mg Pred and 9 mg entocort (this time). For the last 5-6 years, the doses have ranged widely and she has been on steroids (usually low doses) for about 6 months every year.

She had a DEXA scan and her bone density is low (which it has been for the last few years - we've been following it) but not too low. I would ask for a scan before starting bisphosphonates.

We had been tapering very slowly and actually by the time we saw the endo, she was off steroids completely. It has now been 8 weeks and she is slowly losing the steroid weight. The stretch marks are fading.

They said it will take 6-12 months to get back to normal!!!

Once you taper and are off steroids, they will have to monitor for adrenal insufficiency - adrenal glands not functioning because you've been getting steroids from an outside source for so long. My daughter also was diagnosed with that.

We were lucky enough that Cimzia kicked in enough and she was able to taper - obviously you will need your Crohn's under control to taper. She was very stubborn and ignored all her symptoms (we probably should have tapered even slower) because she wanted to be OFF steroids.

Good luck!! Your first step is to get in with endocrinology ASAP.

 

[Hollaka79]

I do! I have been meaning to respond, sorry.

She was diagnosed after years on and off steroids. She had the puffy round moon face, gained about 15-20 lbs in two months, had purple stretch marks on her belly and thighs and a flushed face. As a 20 year old, she was NOT HAPPY about it!

We were sent to endocrinology who diagnosed Cushing's. They said since she had been on steroids for the last 6 months (Pred for 6 months, Entocort for over a year), there was no need to look for tumors, because it was clear the cause was not a tumor on the pituitary or adrenal glands -- it was the steroids we had been giving her!

She was not on as high doses as you are - we did start out at 40 mg, but tapered quickly. I would say most of the time she was around 15 mg Pred and 9 mg entocort (this time). For the last 5-6 years, the doses have ranged widely and she has been on steroids (usually low doses) for about 6 months every year.

She had a DEXA scan and her bone density is low (which it has been for the last few years - we've been following it) but not too low. I would ask for a scan before starting bisphosphonates.

We had been tapering very slowly and actually by the time we saw the endo, she was off steroids completely. It has now been 8 weeks and she is slowly losing the steroid weight. The stretch marks are fading.

They said it will take 6-12 months to get back to normal!!!

Once you taper and are off steroids, they will have to monitor for adrenal insufficiency - adrenal glands not functioning because you've been getting steroids from an outside source for so long. My daughter also was diagnosed with that.

We were lucky enough that Cimzia kicked in enough and she was able to taper - obviously you will need your Crohn's under control to taper. She was very stubborn and ignored all her symptoms (we probably should have tapered even slower) because she wanted to be OFF steroids.

Good luck!! Your first step is to get in with endocrinology ASAP.

Thank you for your reply. It's really getting me down the last couple of days. My GP has been fab & done an urgent referral to an endocrinologist and said I should be seen within a couple of weeks. I totally understand where your daughter is coming from, I have gained the huge face, gained 14lbs in 4 weeks, my neck has shrunk into my spine & I have a huge humpback. My tummy looks like I'm 8 months pregnant again & that's just the visible signs. Physically I feel awful, am constantly drowning in sweat, very tired & miserable, blood sugars are high as is BP & pulse & the last few days I've had uncontrollable shakes in my hands when doing anything. I start the steroid taper tomorrow but only down to 35mg & that'll be for two weeks and see how I go, hopefully the humira kicks in soon so when I hit 30mg I can continue the taper. I'm not due to see my gastro til October & they've kinda just let me get on with it & if you've seen my previous posts I've had a massive battle just getting onto humira. I don't know if they'll start methotrexate as azathioprine caused liver problems & know methotrexate can do the same (as can the humira & they're constantly checking my LFT's for that).
My GP has said they'll want to check for tumours to be sure but given my steroid history I can't see it being tumours but they like to make sure apparently before treating me. Have they started your daughter on any medication or just reduced the steroids? My GP mentioned a medicine that lowers the cortisol levels because I'm still gonna be on steroids a while they may start that but not til they've confirmed it is the steroids..
Everything I've read on Cushing's sounds petrifying! I'm a single Mum of two & my youngest doesn't have a Dad around & im petrified something's gonna happen to me & she'll be left with my parents (she'll be 2 on Friday) without a mum & dad I know I shouldn't "google" but it's such an uncommon disease it's hard to find any info on it..

Anyhoo, thank you for your reply, I hope your daughter continues to improve & stay off steroids once & for all xoxoxox

 

[Hollaka79]

I believe Maya142 has a daughter who was recently diagnosed with Cushings. It sounds like you're having an awful time. Has your GI considered adding Methotrexate with the Humira? That can give the Humira a strong boost and help prevent the formation of any antibodies.

I hope you feel better soon.

Thank you. They haven't mentioned methotrexate as yet - had a hard enough battle getting the humira as my colonoscopy was normal as was MRI (bar slight swelling). It was only after a few FC's over 600 that they did a capsule & discovered ulcers & severe scaring that they decided they'd try humira as azathioprine had caused liver issues. I battled almost a year to get treated hence why I've been on steroids for so long.. If I struggle on the taper again this time then I'll speak to them
About methotrexate & see what they say..: Thank you for your advice Xoxo

 

[Maya142]

No - her case doesn't sound quite as bad as yours. She does have a tiny "hump" on the back of her neck, but it's not very noticeable unless you look for it. She had already tapered and was OFF all steroids once we saw the endocrinologist, so her situation was a bit different from yours.

We did not do anything - they said it would go away with time. They did not mention cortisol lowering medications - but that's probably because she was already off steroids. She insisted on tapering them because the Cushing symptoms were really bothering her (the puffy face, weight gain etc.) even though she continued to have Crohn's symptoms. She had just started Cimzia and it was definitely rough for a while till Cimzia kicked in.

I'm not sure what they'd do if you have to stay on steroids for a while - I don't know if a cortisol lowering medication would be appropriate because wouldn't it counteract the steroids? And you NEED the steroids to work until Humira does...It doesn't really make sense to me, but as I said, I honestly don't know because my daughter was not in that situation.

I think probably you need to wait to see the endocrinologist. It may be that you'll have to deal with the Cushing's symptoms for a while until you can start tapering the steroids. And once you are off them, it still might take a while before the weight, the puffy face, the hump etc. go away .

Cushing's Syndrome caused by steroids (like Prednisone) is different from Cushing's caused by tumors. Our GI and endocrinologist didn't seem worried about it - just sort of acted like "yeah, this happens, it will take time to go away, you have to be patient." But again, my daughter's situation was different from yours, so you need to consult your doctors.

But they certainly did not act like it was an emergency or anything like that. In fact, the opposite situation - adrenal insufficiency (her adrenal glands did not "wake up" even after stopping the steroids - 6 weeks after the steroids were stopped was when we tested cortisol/ACTH) was much more concerning to them.

Hang in there. Definitely talk to your GI about Humira - perhaps you need to up the dose to weekly for it to kick in faster. Or add MTX, if that's possible. A lot of people who don't tolerate Aza are able to tolerate MTX, so don't assume that you won't. It's very individual.

 

[Hollaka79]

No - her case doesn't sound quite as bad as yours. She does have a tiny "hump" on the back of her neck, but it's not very noticeable unless you look for it. She had already tapered and was OFF all steroids once we saw the endocrinologist, so her situation was a bit different from yours.

We did not do anything - they said it would go away with time. They did not mention cortisol lowering medications - but that's probably because she was already off steroids. She insisted on tapering them because the Cushing symptoms were really bothering her (the puffy face, weight gain etc.) even though she continued to have Crohn's symptoms. She had just started Cimzia and it was definitely rough for a while till Cimzia kicked in.

I'm not sure what they'd do if you have to stay on steroids for a while - I don't know if a cortisol lowering medication would be appropriate because wouldn't it counteract the steroids? And you NEED the steroids to work until Humira does...It doesn't really make sense to me, but as I said, I honestly don't know because my daughter was not in that situation.

I think probably you need to wait to see the endocrinologist. It may be that you'll have to deal with the Cushing's symptoms for a while until you can start tapering the steroids. And once you are off them, it still might take a while before the weight, the puffy face, the hump etc. go away .

Cushing's Syndrome caused by steroids (like Prednisone) is different from Cushing's caused by tumors. Our GI and endocrinologist didn't seem worried about it - just sort of acted like "yeah, this happens, it will take time to go away, you have to be patient." But again, my daughter's situation was different from yours, so you need to consult your doctors.

But they certainly did not act like it was an emergency or anything like that. In fact, the opposite situation - adrenal insufficiency (her adrenal glands did not "wake up" even after stopping the steroids - 6 weeks after the steroids were stopped was when we tested cortisol/ACTH) was much more concerning to them.

Hang in there. Definitely talk to your GI about Humira - perhaps you need to up the dose to weekly for it to kick in faster. Or add MTX, if that's possible. A lot of people who don't tolerate Aza are able to tolerate MTX, so don't assume that you won't. It's very individual.

Thank you. I've started the taper today down to 35 for the next two weeks so see how I go. My dr did an urgent referral to an endocrinologist & said I should be seen within two weeks so we'll see, not holding my breath on that one lol.. I'm gonna be on steroids at least another 3 months assuming I can taper & humira works so not sure what they'll do. The last few weeks I've got gradually worse & now my hands have started shaking. I look like an addict in rehab! No fun.. I hope they can give me something to help ease the symptoms & bring my bp & pulse down so it's just a waiting game now...
fingers crossed the Cimzia continues to work for your daughter, being 20 and feeling / looking like we do can be no fun

 

[Mballerina]

Hi, I was diagnosed with a rare form of food-dependent cushing syndrome. This was before I was taking prednisone. My flares would get so bad that it caused so much pain they thought i had adrenal tumours. That turned out to be nothing. The endocrinologist will probably not do anything other than wonder at the beautiful hormonal creature you are and then send you home. Best thing to do is to get off prednisone and remove all foods that are causing pain. I know this is easier said than done. What I had to do is go on a very restrictive fodmaps diet and be very careful for a few months. If you are on prednisone long term, this is a very common side effect. Just be strong and stand your ground, because this is common in crohn's but very misunderstood generally by endocrinologist. It's not the population they serve. So sorry you are going through this!!!

 

[Maya142]

Thank you. I've started the taper today down to 35 for the next two weeks so see how I go. My dr did an urgent referral to an endocrinologist & said I should be seen within two weeks so we'll see, not holding my breath on that one lol.. I'm gonna be on steroids at least another 3 months assuming I can taper & humira works so not sure what they'll do. The last few weeks I've got gradually worse & now my hands have started shaking. I look like an addict in rehab! No fun.. I hope they can give me something to help ease the symptoms & bring my bp & pulse down so it's just a waiting game now...
fingers crossed the Cimzia continues to work for your daughter, being 20 and feeling / looking like we do can be no fun

I would try to go to an endocrinologist who has experience with Cushing's Syndrome, if possible. Hopefully they will get you in within 2 weeks.

The one we were sent to specializes in it and was very helpful, even though essentially they did nothing except tell us it will go away in time. But it's good to have someone on your team monitoring it. And since my daughter did develop adrenal insufficiency after Cushing's (also common, when Cushing's is caused by Prednisone or other steroids), it's REALLY good that she is being followed closely.

Hope you feel better soon - REALLY hope the tapering takes away some of your symptoms.

 

[Hollaka79]

Heard from the endocrinologist who said I wasn't urgent so will see me routinely Then ended up in hospital as GP thought I had a PE. All clear on that front but BP sky rocketed as did pulse so have put me on beta blockers. Having pretty bad chest pain & shortness of breath & my face has swollen. So badly that I can't bend my head now without gagging. Also I've been having a lot of pain in my liver (again ) they've checked my LFT's and all ok so not the humira but read Cushing's can cause liver pain (I do have a fatty liver). Am going for a DEXA scan tomorrow to check my bones as literally feel like I'm getting weaker by the day. Spent all weekend in bed sleeping & that's not cool on my Mum who has to look after my girls (2&11).
I've been told to taper 5mg every 4-6 weeks so looking at a long time feeling like this so hope they see me soon. If not I'll be ending up in the ER again

 

[Maya142]

Really sorry to hear you won't get to see an endocrinologist soon. That seems ridiculous, given your symptoms .

Is there anything your GP can do? Talk to the endocrinologist and say you need to be seen urgently? If the endocrinologist can supervise it, maybe it would make sense to do a faster taper?

Sending hugs. I wish I had better advice - my daughter definitely did not have such awful symptoms from Cushing's.

 

[Jelly loves Peanut butter]

Sorry you are not feeling well. A lot of your symptoms sound cardiac related ( fatigue, shortness of breath, chest pain, weight gain). Long term use of steroids has a risk of developing heart disease and heart failure. Did you have any cardiac testing while in the hospital ( like echocardiogram.stress test, cardiac enzymes)? Also some people develop steroid induced diabetes and need medication to control their blood sugars just like you would if you were a diabetic. Not saying that's what is going on with you but worth having checked out since there was glucose in your urine. Blood test of hemoglobin A1c ( not the one on a CBC) can definitely be helpful to know if you are developing steroid induced diabetes.

Hope you get to feeling better soon!

 

[Hollaka79]

Sorry you are not feeling well. A lot of your symptoms sound cardiac related ( fatigue, shortness of breath, chest pain, weight gain). Long term use of steroids has a risk of developing heart disease and heart failure. Did you have any cardiac testing while in the hospital ( like echocardiogram.stress test, cardiac enzymes)? Also some people develop steroid induced diabetes and need medication to control their blood sugars just like you would if you were a diabetic. Not saying that's what is going on with you but worth having checked out since there was glucose in your urine. Blood test of hemoglobin A1c ( not the one on a CBC) can definitely be helpful to know if you are developing steroid induced diabetes.

Hope you get to feeling better soon!

Thank you. The GP has said I've got steroid induced diabetes as my hbc1 came back in the pre diabetes range and that hadn't taken into account part of my time on steroids so she has me sugar testing daily but hasn't started me on any meds as yet. At the hospital they did an ecg (twice) which showed sinus tachycardia & the report the dr sent to gp says I need a 25 hour tape (so I'm assuming that's 24 monitoring of the heart or something) he also said that he felt it was Cushing's & needed to see an endocrinologist.
My symptoms just seem to be getting worse daily. I can barely bend my head forward as my face is so swollen it makes me gag my liver is really hurting and my tummy is huge, I'm covered in little purple marks on my belly & bruise & cut myself so easily. I'm so tired but am awake by 3-4am then am super alert & takes me ages to get back to sleep again (but know steroids can do that). My GP doesn't want me reducing to quickly in case I crash as every time I've tried to taper my crohns has flared so wants to do it super slowly this time but in the mean time that doesn't help me feeling like I do... Having my bone scan tomorrow & if still having chest pains may take a walk down the corridor to the walk in clinic as it's getting a lot - and I thought beta blockers were meant to help chest pain & lower my pulse etc?! Does seem that Cushing's is the disease they don't want to deal with in this country..

 

[Hollaka79]

Really sorry to hear you won't get to see an endocrinologist soon. That seems ridiculous, given your symptoms .

Is there anything your GP can do? Talk to the endocrinologist and say you need to be seen urgently? If the endocrinologist can supervise it, maybe it would make sense to do a faster taper?

Sending hugs. I wish I had better advice - my daughter definitely did not have such awful symptoms from Cushing's.

Thank you, she's written to my gastro saying they need to see me urgently as have developed all these symptoms cos of the steroids & need to taper but safely cos of my history in failing every time i taper. But she's gone back to the endocrinologist saying she'll leave it for now & re refer once I'm off the steroids!! That seems crazy to me especially as I'm failing fast over here... am so fed up with it all now tbh just get the crohns sorted & now this

 

[Maya142]

Really sorry. I understand the need to taper slowly, it's just so hard when you're so miserable. For us, we were told my daughter would be followed by an endocrinologist from now on - they would help manage the steroids in the future (which inevitably she will need again at some point), to help minimize side effects.

The bruises and stretch marks are very typical Cushing's symptoms - my daughter had those too. The purple stretch marks will fade over time. It's been two months and hers are still visible, but they are fading.

Same with the swollen face and tummy - they will go down.

But expect a long recovery - with my daughter they said 6 months to a year, since you'll be tapering much more slowly and were on much higher doses of steroids, I would expect longer .

Steroids are just the worst - they work well, but boy, they can cause a lot of problems.

Hang in there.

 

[Jelly loves Peanut butter]

A normal EKG does not mean you don't have a heart problem. An echocardiogram ( heart ultrasound) will measure your heart function percentage as well as look at all the heart walls and valves to look for abnormalities. A 24 hour monitor will only record the rhythm and that is to detect arrhymias. The beta blocker will help BP and heart rate but will not help for chest pain. Minimally I would hope your doctor would do a stress test and echo just to be sure, especially with the Risk factor of long term steroids. I wish you well and hope you feel better soon! Sending my support.

 

[Hollaka79]

Thank you all. Did go to the walk in clinic this morning but told a 3 hour wait so decided to leave & go back to my Gp. Chest pains getting worse as is shortness in breath so will call my Dr tomorrow as she's off today or go to er if gets too bad. Am just over it all now. Hate crohns hate Cushing's hate being ill lol... toddler tantrum over

 

[Hollaka79]

Me again. Spent all day in the hospital as chest pains worsened. One dr was ace one was a nightmare Initially thought I had a PE as the bloods they ran showed possible blood clot then ct scan of chest was clear. ECG showed tachycardic and quote "a not very happy heart" so the 1st dr wanted to run an ultrasound of my heart but 2nd dr said no it's probably pericarditis & go home & take morphine Said it shouldn't last longer than 3 days & if it does I have to gonna back. Stupid part is it's been bad almost 3 weeks & just getting worse which is why I went in now I have to wait 3 more days to see if it improves. They then started trying to fob it off on my crohns whilch I know it's not as only been dealing with crohns 30 years & currently on massive dose of steroids (hence the Cushing's) plus humira & am ok when it comes to my crohns! Ugh! Nightmare! I tried to ask them if it could be steroid or Cushing related & they wouldn't have it so I'm back home, in bed, still feeling like crap with pain in chest & now even more annoyed lol... anyway that was my update from today

 

[Jelly loves Peanut butter]

Hi Hollaka79..just checking how you are doing today

 

[Hollaka79]

Hi Hollaka79..just checking how you are doing today

Hi Jelly (love your username btw). I'm still suffering with chest pain. The GP wants to run another ecg in 2 weeks as despite beta blockers my pulse hasn't come down. Went into Drs today for reading & my "resting" heart Rate is between 115-135 & my bp is fluctuating but lower since the BB. I'm umming & ahhing about going back to the ER it's just I hate wasting time & to be sat there all day to be told oh there's not much we can do so go home just drives me insane. So I'll see how I feel tomorrow I guess. I have two children (single mum) an 11 & 2 year old so going in means my mum has to juggle kids me dogs the lot lol so not fair on her.. I've reduced my pred to 30mg in the hope that'll help symptoms of Cushing's but so far no luck. Wish the endocrinologist would see me before I finish my steroids but they're saying they won't see me til I'm off them but I was under impression that if I develop Cushing's on steroids I should be closely monitored??? Ugh. I don't know lol. I'm just at that stage that I wanna feel better. Add to that, tomorrow is humira injection day & not sure whether to inject with this pain in my chest?? Arghhhhhh lol!!! Thank u again for checking in on me. I'm sure I'm driving everyone mad as know I'm driving myself mad

 

[Jelly loves Peanut butter]

So it sounds like you never had a heart ultrasound? Can I ask what beta blocker you are on? Some people develop a pericardial effusion (fluid) which sometimes needs to be drained depending on your symptoms. Do you feel like you are feeling worse, better, or the same since starting the beta blocker? To diagnose pericarditis there would be changes on your ekg and also doc can hear a rub sound with the stethoscope, but without ultrasound there is no way to know if or how much of an effusion there is. Seems like you should be feeling better after being on the beta blocker for several days now. Maybe you need a different beta blocker? Also did you have high blood pressure already or is that new?

Wishing you well Hollaka79...sorry to hear you are still under the weather! Keep me updated!

My user name comes from me being "Jelly" and my son being "Peanut butter." Every night I say "Goodnight Peanut butter," and he says "Goodnight Jelly."

 

[Hollaka79]

Awww that's so cute, I love it!

I haven't had a ultrasound on my heart, one Dr said I should have the other Dr didn't I've been on the BB 2 weeks now & it's lowered my BP slightly (I always have low bp normally around 90/70 prior to all this Cushing's nonsense & it's down to about 140/99 so better) but my pulse is still averaging between 110-130 & the last ECG showed what the Dr said was a unhappy heart that's starting to get a bit wobbly. But he didn't elaborate. This was in the acute medical unit which is kind of an in between of general doctors & ER, the GP rings u through & u go in to a medical unit (a bit like central care) but it's quicker than going straight to ER as they're expecting u.

I'm still getting chest pains, every now & then I feel my heart pounding & fluttering like mad then it calms down & just aches. I also have pain in my right hand side which can't be my heart so who knows?! I'm in bed using an inhaler to help breath trying to relax.
Half me thinks I should go back to ER tomorrow other half thinks just wait 10 days for next ECG & bloods with my GP.
I'm a bit frustrated that they're not putting crohns steroids & Cushing's together & being cautious with my heart & breathing difficulties & getting me seen by either an endocrinologist or cardiologist. I can't get my gastro team to see me sooner as technically it's not "gastro"
Related I lived in FL for years so I'm a bit spoiled for seeing specialists as & when u want to whereas here it's a whole long process & im super inpatient

 

[Hollaka79]

So it sounds like you never had a heart ultrasound? Can I ask what beta blocker you are on? Some people develop a pericardial effusion (fluid) which sometimes needs to be drained depending on your symptoms. Do you feel like you are feeling worse, better, or the same since starting the beta blocker? To diagnose pericarditis there would be changes on your ekg and also doc can hear a rub sound with the stethoscope, but without ultrasound there is no way to know if or how much of an effusion there is. Seems like you should be feeling better after being on the beta blocker for several days now. Maybe you need a different beta blocker? Also did you have high blood pressure already or is that new?

Wishing you well Hollaka79...sorry to hear you are still under the weather! Keep me updated!

My user name comes from me being "Jelly" and my son being "Peanut butter." Every night I say "Goodnight Peanut butter," and he says "Goodnight Jelly."

Oh forgot to add I'm on Propanol & technically feeling worse as didn't have this much chest pain before starting the bb it was just mild & mild breathlessness with high BP & pulse

 

[Jelly loves Peanut butter]

You should really be feeling better by now. Any way you can call your GP and be seen sooner? Seems like you need a cardiologist to order the appropriate tests to check for other heart problems. If your heart is "fluttering and pounding" you may be having intermittent arrhythmias. "Right sided chest pain"...have you had your gallbladder checked? Hope you're feeling better soon.! Let me know how things go.

 

[Hollaka79]

Thank you, yes they checked my gb in April & was ok. I have a fatty liver & azathioprine caused liver issues back in April but LFT's are all ok now.
My dietician called me today to see if I'd started the modulen (can't bring myself to taste it yet lol!) and I told her about the Cushing's & she said I needed to inform my IBD team so I've called & left them a msg. They'll pick that up Tuesday as holiday weekend here.
Not sure what the right pain is lol, it's kinda higher up than GB although I've had liver pain for a few weeks & they're keeping an eye cos of the humira but so far so good. I think I have so much swelling around my top of my belly that it's putting pressure on everything- like being 8 months pregnant!
I reckon I need to see a cardiologist but it's up to gp to refer. I'll probably find all this is just my hiatus hernia

 

[Hollaka79]

Well I'm upset! IBD team "helpline" got back to me today & said that I need to see an endocrinologist about the Cushing's & the steroids not them! And the endocrinologist say I can't see them til I'm off the steroids & my gp says the gastros need to see me as they put me on steroids which has caused all this but they're saying to see the endocrinologist!! Arghhhhhhhh!!!!!!!! Meanwhile I'm just getting worse each day & not due to see anyone til end of this month! Officially peed off.com today!

 

[xmdmom]

I'm sorry I haven't read every post on this thread. I do not understand why your doctor thought the Cushing's syndrome was due to anything other than the steroids that you were taking. From what I read, you were on steroids on and off for a year and consistently on 30 mg prednisone since April. That certainly can cause many symptoms such as weight gain, HTN, high blood sugar, etc. If your doctor wanted to document that the Cushings was from the prednisone, he or she could check a morning blood cortisol; that should only be low in exogenous (medicine - caused) Cushings.

[One study evaluating the prevalence of Cushingoid abnormalities in 88 patients initiating long-term systemic corticosteroid therapy (initial daily dose ≥20 mg of prednisone or equivalent) found the cumulative incidence rates of these abnormalities to be 61% at 3 months and almost 70% at 12 months [33].] <-- So, it is not unexpected that you would have symptoms of Cushings given your prednisone dose and duration.

It sounds like the cause of your Cushings is known (prednisone) and that trying to wean you from steroids and also control your Crohns with other non-steroid medications should be the goal. In addition, your doctors should treat symptoms of Cushings that need treatment (high Blood sugars, high blood pressure etc.)

What do your doctors think is causing the chest pain? That should be evaluated fully if it has not been.

Please forgive me if I have missed something important here.

And of course, do not take this as a medical opinion.

 

[Hollaka79]

I'm sorry I haven't read every post on this thread. I do not understand why your doctor thought the Cushing's syndrome was due to anything other than the steroids that you were taking. From what I read, you were on steroids on and off for a year and consistently on 30 mg prednisone since April. That certainly can cause many symptoms such as weight gain, HTN, high blood sugar, etc. If your doctor wanted to document that the Cushings was from the prednisone, he or she could check a morning blood cortisol; that should only be low in exogenous (medicine - caused) Cushings.

[One study evaluating the prevalence of Cushingoid abnormalities in 88 patients initiating long-term systemic corticosteroid therapy (initial daily dose ≥20 mg of prednisone or equivalent) found the cumulative incidence rates of these abnormalities to be 61% at 3 months and almost 70% at 12 months [33].] <-- So, it is not unexpected that you would have symptoms of Cushings given your prednisone dose and duration.

It sounds like the cause of your Cushings is known (prednisone) and that trying to wean you from steroids and also control your Crohns with other non-steroid medications should be the goal. In addition, your doctors should treat symptoms of Cushings that need treatment (high Blood sugars, high blood pressure etc.)

What do your doctors think is causing the chest pain? That should be evaluated fully if it has not been.

Please forgive me if I have missed something important here.

And of course, do not take this as a medical opinion.

Thank you for your reply. I have had the suppression test with a morning blood test & cortisol levels were still high. Also did the 24hr urine & again high (but expected to be raised cos of steroids). I agree that I should be tapered off steroids (carefully given the length of time on them) but gastro team say I should see an endocrinologist to do this (which seems odd to me) and I'm on Humira so am weaning myself down on the pred just to try & feel better from the Cushing's. My GP has put me on beta blockers to lower my BP & is monitoring my blood sugars as am now in the prediabetic - diabetic range on my blood tests. I'm still tachycardic & having another ecg next week as the last one showed my heart wasn't happy (Dr said it's throwing a wobbly!) So will see what that outcome is. I still have chest pain & struggle to breathe- they don't know what that is, they said cardiatis but said that should be better by now (which it's not) so I don't know? I've had a DEXA scan which I'm assuming is normal as not heard anything back but will chase it at some point. My hump is pretty bad now & also painful & im gettImg muscle weakness & pain. The list of symptoms is endless but right now nobody wants to deal with me, all consultants just keep passing the buck (the buck being me) & saying I just have to deal with feeling like this (easier said than done) until I'm off the pred but could be on the pred for months to come yet, meanwhile my heart is constantly beating in the 130's + , I can barely breath, I'm exhausted & I look like Humpty Dumpty Add to that my crohns & juggling two children on my own & im pretty fed up with it all tbh..
Thank you for your reply again, i appreciate it

 

[xmdmom]

I am very sorry that you are going through this all.

If you have not seen a cardiologist, that would seem to be an urgent consultation given your heart rate and chest pain. Can you go to your doctor or the emergency room with this complaint in order to get faster attention?

Blood cortisol can be affected by oral prednisone according to Mayo labs which wrote: Patients taking prednisone may have falsely increased cortisol levels because prednisone is converted to prednisolone after ingestion and prednisolone has a 41% cross-reactivity. [ from http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/8545 ] This is why they use dexamethasone for the suppression test as I believe dexamethasone doesn't crossreact with the blood test.

Hang in there! And continue to advocate for yourself.

 

[Hollaka79]

I am very sorry that you are going through this all.

If you have not seen a cardiologist, that would seem to be an urgent consultation given your heart rate and chest pain. Can you go to your doctor or the emergency room with this complaint in order to get faster attention?

Blood cortisol can be affected by oral prednisone according to Mayo labs which wrote: Patients taking prednisone may have falsely increased cortisol levels because prednisone is converted to prednisolone after ingestion and prednisolone has a 41% cross-reactivity. [ from http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/8545 ] This is why they use dexamethasone for the suppression test as I believe dexamethasone doesn't crossreact with the blood test.

Hang in there! And continue to advocate for yourself.

Thank you! Just wrote a whole reply then it got deleted as I tried to post it ugh! I may go to er as struggling with rapid heart beat (pounding), shortness of breath despite multiple ventolins tonight & chest pains still. It's just a performance going & I have no patience lol..
Anyway, off to sleep now (or try) so thank u again for ur reply xx