Prednisolone Effect on Final Adult Height :(

[Kancer]

I would like to know if 13 weeks of Prednisolone use if considered long term steroid use as I've heard long term use could stunt height growth.

I am a bit worried as I am still a teenager, I am afraid it might stunt my growth big time as I heard long term steroid use would affect final adult height. My parents are 6'0" and 5'6" and I am 5'7" thus I would like to clarify on this.

Oh, I am taking it for Crohns and currently at 10mg after a gradual taper from 60mg. I hav ebeen on 10mg for nearly 4 weeks and 2 more weeks to go before I see the doctor thus I hope i could get some useful insight.

Thank you very very much :sign0085:

 

[Clash]

Long term steroid use can affect growth but more importantly CD itself when active can stunt growth. It is one of the reasons some GIs use the top down theory of using the big gun meds first.

A lot of kids find that once they have their CD in remission their growth plays catch up because often their bone age is also stunted which gives a larger window for growth when healing has occurred.

For instance my son is 18 but his bone age is a year and half behind at 16.5 so he actually had more time to grow. The docs can run some tests to determine bone age and growth curve for you.

 

[Kancer]

Thank you for the information. I would like to clarify one thing. Having CD stunts bone age meaning that bone fuses earlier or it stops ageing hopefully until Crohn's is in remission.

The reason I am asking is that every time I bring up my height with my doctors, they say I am in the normal range. Where I live, people are approx my height however I am from a family with tall genetics, both parents side. My dad and my uncles from both sides are at least 5'11" and most are 6'+. I was 5'6" when I was 15 and thats when my Crohns was diagnosed and I have grown only 1" in the last 3 years.

Furthermore, my sister is a bit taller than 5'7" thus a bit taller than me hence why I keep mentioned the tall gene in the family.

 

[Kancer]

And would you consider 13 weeks to be a long term usage?

 

[Clash]

When you have active disease your bone age can be slowed down but also your growth can be stunted. So, someone can be short in stature for their age(say 15yo)due to active disease but have longer to catchup in growth because their bone age was also affected(meaning testing showed their bone age at 13 which gives them an extra two year window).

A lot of the Parents in the forum discuss growth frequently because it is a real concern with pediatric growth. Although pred has risks with long term use and it isn't wise to use it a a long term treatment option it does have the benefit of dampening inflammation and allowing time for the maintenance med to reach full therapeutic levels.

I'm going to tag jmrogers4 and Mr chicken as both of their kids had growth delay.

As far as how damaging 13 weeks of pred would be to growth I really don't know but probably the bigger threat to growth would be the active disease.

Edit to add: my son is 18 and he has never reached full remission since dx at 15. His Dad is 6 feet and I'm 5'7". He is 5'7.5". His bone age is 16.5 so if he were to reach full remission he does have a window still for growth since is bone age is 1.5 years behind his actual age.

 

[Kancer]

Thank you very much for the detailed description. I hope to bring this up with my doctor in 2 weeks. When I was diagnosed with Crohns, I was given Pentasa 500mg thrice a day. However I was never in 100%b remission as my ESR tend to be around 15 and sometimes 30 but never showed extremely bad symptoms other than diarrhoea/constipation for nearly 3 years. I finally started preds 3 months ago and my bowel movement returned to be normal now.

I hope I get get more insights on this issue before going to my doctor. I was never worried about my height as my mom said she's a late bloomer but I am not sure if she is saying to comfort me. At my age, I am starting to get worried as I look like a 14 year old with narrow shoulders and a short stature. I never thought Crohn's would impact height growth.

Thank you again

EDIT: I had to start preds becasue my ESR jumped to 75 and another blood work (C-protein?) was high as well

 

[Clash]

So you've been on pred for 13 weeks with no maintenance med? The problem with pred is that the inflammation returns once you start to taper or taper off. Pentasa is usually not enough to keep pediatric CD in check. Since most maintenance meds take anywhere from 6 weeks to 4 months to reach full therapeutic levels they are usually started with pred so that by the time you start tapering the maintenance med is ready to take over.

You can ask your GI to run the bone age tests. it's imaging and such and it should give you some idea of where you stand. But if you haven't been in full remission since dx then odds are it is the active CD affecting your growth and not pred.

Hopefully one of the moms I tagged will be along as both their son's had incredible growth once they found a maintenance med that controlled CD.

 

[Kancer]

Actually I am on Prednisolone 10mg, Pentasa 500mg (3 daily), Calcium and Vitamin D3 supplement. My doctor thinks we should use Pentasa first to see if I can enter remission as he thinks other maintenance drugs comes with serious side effects. He was mentioning another drug that is used to treat cancer patients (I think it might be humira as He was trying to be a bit vague to not stress me out) that might have to be used if I don't get into remission.

 

[Mr chicken]

We were told pentasa either works or it doesn't
To give it 30 days
If no improvement then move on .
Ds has been on pred for almost three months as well
But mainly 10 mg and under for his arthritis
Trying to wean off now
The thing is in uncontrolled inflammation. Won't let you grow and neither will steroids
So you try to get the inflammation down as fast as possible using the least amount of steroids for the least amount of time

I can say Ds is only 11 and started 6-mp around age 7
Later moved on to methotrexate before starting remicade at age 8
He is now on humira/Mtx
No issues with colds or stuff even in the lower school grades .

I think keeping the inflammation away without steriods

 

[Kancer]

Sorry for writing a lot however I wish you take some time to read this and help me out. Thank you in advance

I have been prescribed Pentasa 500mg x3 for over 3 years but I was extremely chill about CD as I thought it wasn't a bad disease. I actually ignored my medication for nearly 3 years until 3 months ago.

I didn't know CD was a serious disease thus my ignorance with CD maintenance. I would start taking Pentasa 2 weeks before my blood test and stop after over the last 3 years. I now understand how stupid I was. I was annoyed of Pentasa because it caused bloating whenever I took them.

Now I am taking all my medication properly as I am well aware of the consequences. My parents weren't well aware of CD as well other than the malabsorption. Thanks to you all I now understand the effects of CD of height.

I would like to ask what I should ask my doctor when I visit him in 10 days and how I should make him take my complaints seriously regarding

1) My linear growth. He dismissed my height concern before by saying I should have reached my adult height by now
2) Ever since I started taking Preds, I am having skin issues esp. getting warts that are spreading on my feet
3) Dry eyes with high eye pressure on the left eye only ( I need to go to the eye specialist again to check if it could be glaucoma)

I feel like I am getting serious side effects despite being on 10mg for the last 4 weeks and I would love to get off preds for the sake of my eyes at least.

 

[Clash]

At 10mg, it seems you are tapering. How long until you taper off?

When you go back to the GI? Or if you are experiencing concerning side effects a call to the GI should include your concerns as well as any CD symptoms you are experiencing.

Learning how to be your own health advocate can be difficult but will serve you well going forward.

When addressing the GI with your concerns you need to phrase it to exclude a dismissal. Such as, tell him your concern, what you believe it is associated with and then ask how he is going to address it as you feel certain it need to be addressed.

Make a list of your symptoms, questions and concerns. Go over these with your parents and make them aware of how much they concern you.A parent can be a great advocate especially if they know exactly what most bothers you.Take the list with you to the GIs and tick off each one as you address. Take notes of his responses and add follow up questions at the end of addressing your list.

I would also approach him about pentasa. Go ahead and ask for the plan if pentasa fails to keep things at bay when the pred is removed. You don't want to end up in a situation where you are right back on pred and make sure the GI knows that.

Good luc!

 

[Kancer]

I took 60mg for 4 week then the doctor told me to taper it off to 10mg over 4 weeks. I went back at 10mg and my ESR rose up again thus he told me to continue at 10mg for another 5 weeks and see him again after getting the blood work done. I have to see him in 1 week to see if I can come off preds. Despite feeling much better, I am not sure why my ESR went high again as my bowel movement are normal. However I have pain in upper buttocks which I have created another thread here for help. I believe it might be artihritis or abscess at this point. I hope to ask the doctor to do MRI to rule out anything.

And Clash, may i ask if you are planning on making your son go on HGH regarding his height growth?

 

[Clash]

No, we aren't planning on going on HGH. Since he isn't in remission and active disease causes malabsorption and leads to the stunted growth the most opportune time for HGH would be when he was in remission. We're not there yet. And, honestly, I don't think C would be interested since at this time he gives himself a humira shot every other week, a methotrexate shot every week, takes px iron, vitamin D, and folic acid I doubt he'd be eager to add yet another medication.

I think I remember a parent on here whose son was on HGH but can't for the life of me remember what their user name was.

 

[Jmrogers4]

Yes there was a parent whose child was on HGH but if I remember right additional height from it was only expected to be an inch or 2 taller.
My son certainly had delayed growth at 14 1/2 he was 5'1" and weighed 89 pounds his bone age at that time showed at 12 1/2 so he had extra time but it was hard for him socially as he appeared about 10-12 years old.
If I'm doing the math right you are now 18 I don't know if you are male or female, females generally reach adult height around 16 but can grow past that depending on bone age, males generally around 18 but again can grow past that depending on bone age and whether or not their growth plates have closed. Once those have closed you are pretty much out of options as it was explained to us.
It wasn't until we had the disease under control through the use of remicade that we saw growth and development. He will be 16 this month and is currently 5'9" and 125 pounds so a little on the underweight size but I was slim at that age as was his father and his brother is quite slim as well. I wouldn't mind a few more pounds but he is doing incredibly well and enjoying being a normal teenage boy.
13 weeks would not necessarily be long term use but if you are going on and off prednisolone for years it would definitely effect growth, from what I understand you do not grow while on prednisone but 13 weeks wouldn't make much a difference.

 

[24601]

Something I would ask your doctor about is enteral nutrition - either exclusive or partial to counter malabsorption (and thereby help with growth) and to treat inflammation while you wait for a maintenance med to take effect.

I believe some of the parents whose kids have experienced good growth increases have used this as part of their therapy.

It's also without side effects and I understand your concerns with that - though it is of course a balance as undercontrolled Crohn's comes with risks and side effects, not just an effect on adult height.

Good luck with your doctor's appointment. I hope it goes well. If you want to push for something more effective than pentasa as a maintenance med for Crohn's then I would just make that really clear to your doc :thumright:

 

[Kancer]

Thank you very much for your inputs. I am a male and just turned 19. I was 167 at 15 and that was when i got diagnosed. Currently I am 170 and have been that since 16. I haven't really grown. My sister was 170 when she was 14.

I understand height is the last thing you should be worried about when you have Crohn's but being a guy with a sister taller than him, it affects the confidence when relatives/friends make fun of you without realising what you are going through. I don't like telling people what I have and only my immediate family knows this. My parents tell me I would grow till I am 21 and thats what keeps me going and I am planning on asking my doctor to do a bone age test.

@Jmrogers4: Did your son grow 8inches in just a year at 15? Because my max growth spurt was 3 inches. Idk if this matters but I was born premature by 2 weeks but I don't think that would affect my height by this much or I might be wrong. I am 5'7" and 138 pounds thanks to preds. It seems that your son has taken methotrexate, how did he do on that drug?

@24601: Isn't enteral nutrition administered through tubes? So I would need to be hospitalised or have a home nurse? I am particularly not interested because it looks a bit too complicated plus despite the benefits it would bring, I might snap having a liquid diet for a long period of time. It seems that you have taken methotrexate, how did you do on that drug?

 

[24601]

Hi Kancer,

Enteral nutrition is used to refer to drinking complete nutrition drinks like Boost or Ensure and in can be supplementary or as a total replacement for food. It helps get your body the nutrition it needs to heal and grow - even a couple a day can help. And when you go up to somewhere like 70% or 90% of your calories from the liquid diet then it has a therapeutic benefit equivalent to prednisone but without the side effects.

While some people do use an NG tube so that they can pump overnight or avoid the taste many people drink the drinks and find it perfectly doable. Maybe you could try adding a couple in each day and seeing how you feel? Even if you go with an NG tube you can insert overnight yourself and pull it in the morning so no one else knows - there are a bunch of forum members who have teenage sons who have done this I think and found it helpful.

I do understand that it might not be for you but I think it's always good to know about all the options. And drinking a couple shakes a day would be the easiest way in to see if you can tolerate it. If you can you could move to drinking more at least for a few weeks.

I know you know all the risks of Crohn's and are right that loss of height is not the biggest threat you face but don't feel bad about worrying about that side of things too. I know that many Crohnies will share those sort of concerns. You are most definitely not alone.

I have been on methotrexate and it was my winning immunomodulator! I'd reacted badly to azathioprine and 6mp but had no issues with methotrexate - no side effects at all! And it did reduce my inflammation levels. For me it wasn't enough but with Crohn's you just have to try and see if a treatment is right for you. Hopefully methotrexate does wonders for you as it has for others. I think it takes at least six weeks to work.

Let us know how you go

 

[Clash]

Hey Kancer, my son used EN for weight gain before surgery. He was on it for about 3 mos. The added nutrition did help him to gain weight and height. Due to his active disease he is lucky to get a half an inch in a year but he got a little over half in the 3 mos he did EN.

He cannot drink boost or ensure due to their texture so he chose to use an ng tube over night. He would put the tube in every evening and pull it before his shower in the morning. If you aren't in-hospital the GI office usually has a nurse that shows you how to insert during an appointment with your GI.

There are a number of kids and young adults that have used supplemental EN and a lot of them just drink the Boost or Ensure along with their regular diet to fill nutritional gaps caused by malabsorption.

If C found them palatable I would have him drink 1-3 a day. And actually the taste he likes just not the texture. Some make them up in smoothies or shakes.

I'll tag Tesscorm as her son is in college and supplements with drinking a few shakes a day. He has had really great results with supplemental EN.

 

[Jmrogers4]

It was about a year and half that he grew that much and is still growing. I don't think it would have happened if we did not get his disease in remission which allowed him to absorb calories/nutrients from food. I believe a lot of that was catch up growth, the growth seems to be slowing down but still going. The bone age scan put him at about the same age as his younger brother and when he started remicade he was a couple of inches shorter than him, he is know in inch taller. His brother generally averages 3-4"/year over the last couple of years which I think is pretty standard for his age (he just turned 14 and is 5'8"). His father is 6'1" but my family is a bunch of short people and he has now passed us all up. I'm 5'4" and my sister is the tallest at 5'7" (she's even taller then my brother who is 5'6").
He has done EN as well and he drank the formula. Pediasure Peptide Strawberry flavor. It definitely helped him put on weight and was an added boost.
As for methotrexate it did help him control the disease and he even grew a little while on it unfortunately for him he had a rare reaction to it which involved his lungs and was unable to continue. I wish he could have stayed on it.

 

[Tesscorm]

Sorry I'm a bit late to this... but, as Clash mentioned, my son did EEN (3000 calories/day) for 6 weeks and then continued on supplemental EN (at half dose, 1500 cal/day) for two years. Once he started remicade, his GI didn't feel it was necessary to continue with the half dose of EN but, my son still drinks one to two Boost shakes per day.

It's worked amazingly well for him. He was already fairly tall when he was diagnosed at almost 17 years old, 5'10", so he hasn't really gained a lot in height since then (but this was probably not due to crohns, just that he had probably already reached close to his adult height), however, he has certainly filled in and gain healthy, muscular weight. Before getting sick, he was approx. 140-145 lbs, at diagnosis, he'd dropped down to 120-125 lbs. After three months on formula (6 weeks formula only, 6 weeks supplemental with regular food), he was up to 155 lbs.

He has added an inch or two to his height but I do believe the nutrition he gained over the two years doing supplemental, plus the continued Boost shakes, has helped him reach a healthy and solid weight - he's now approx. 180 lbs. He just turned 21, so it didn't happen overnight but I think the nutrition and calories just helped boost his growth and development.

It really has become habit for my son... he drinks a shake in the morning and he's found it a very quick and convenient breakfast (his roommates are now buying their own shakes because they've seen how 'easy' it is ) and, if he's in a rush to get to a hockey game, again just grabs a shake on his way out and eats after the game...

It really is something that can't hurt (although you may have to try a few flavours, brands to find one you like) and you can only benefit from it.

Good luck

 

[Kancer]

Sorry if i haven't responded to anyone in a while. I try not to be on forum lately as it tends to get me depressed when I look at others symptoms and it gets me thinking if I might get them. I admit i have a tendency to overthink. And thank you all for still replying to my thread.

So I went to for my doctor appointment yesterday and I am not sure if what I got was good or bad news. Heres my blood work results:
- ESR increased from 39 to 44 in 5 weeks
- CRP increased from 14 - 22 in 5 weeks
- My Iron rate ( or something like that) is 6% while my hemoglobin is 13.5
And all other blood work was normal

I talked to my doctor about my height concerns as well. He sent me in for a left wrist scan and scheduled another appointment in 4 weeks. He told me to continue my current medication (10mg Prednisolone, Pentasa 500mg X 4, Calcium and D3 supplement) and he added Flagyl and Levofloxacin as he assumed my increased ESR could be due to abscess. Although abscess wasn't found through physical examination, he told me it could be possible the abscess could be extremely small thus causing the buttock pain.

Since he doesn't want me to go on chemotherapy drugs yet as he thinks side effects are risky so he wants to avoid it until I feel physically unwell because I am not having D or abdominal pain. And he also said I could start EEN if I wanted as it won't hurt.

So today I am starting off with Ensure. I plan on replacing lunch with Ensure and soon hopefully all meals. I had my first shake now as all I can feel is a vomiting sensation after drinking it. Is it normal as I found the taste good. And is it recommended if I use milk with ensure instead of water? And I do not think i am lact. intolerant

EDIT: I get extremely tired due to my iron levels

 

[Catherine]

kancer

I just wanted to add a positive post for you. My daughter is 19 too. She is currently in Spain and having the time of her life. She takes aza to control her Crohn's.

Depending on what the x-ray shows, I would be pushing to have you concerns about your height taken more seriously. As the grow window is closing for you.


She has no growth since dx, but she is quite happy being 172-3 cms

 

[Kancer]

Catherine,

Thank you very much for the support. I envy your daughter but I am not sure what I can even do with Crohns. Even if my growth plates haven't fused, I might need to go on HGH and if you are taller than 5'4" for guys, I doubt they would prescribe them.

I just get freaking irritated when the doctors say my height is normal. When I asked the doctor to do a bone age test, he said 170cm is normal for an adult male and I had to force him do it. Since I live in Asia, I get that people are around my height but thats not the point. All my cousins (both genders) are as tall as me (girls) or taller (guys) and when I let him know this, he just told me to consider it my genetic plateau. I asked my doctor if we should change the treatment plans and he wants me going on the above medication a bit longer and see if any improvements are shown as he worries about the side effects even if they are rare. (Because 1 of his previous patients is suffering from cancer due to long-term use of MTX)

I am at my wits end :-(

 

[Tesscorm]

It is frustrating when you and your doctor are not on the exact same path. There are so many variables with crohns - different symptoms for different people, responses to medications, bottom up or top down medication approach, etc., etc. :ywow: And, while often there is no 'right' answer, it is annoying when you aren't in agreement with your GI. Do you have a GP you can speak with? When my son's new GI wanted to move my son from EEN as a treatment to remicade, I was very worried about the side effects and wasn't convinced the move was necessary. I spoke with my son's GP and asked his opinion; while he isn't a GI, his was an educated and experienced opinion. While he did not gloss over the risks, I felt more confident that he offered a 'whole patient' opinion.

Also, is it possible for you to get a second opinion? It might be helpful and/or reassuring for you to have a second opinion.

 

[Kancer]

The problem is that my family doesn't really have a GP. Since a young age, we would just simply go to any clinic nearby but my parents are considering looking for a second opinion

The problem is that when my Crohn's got severe 3-4years ago, I went to a government-funded hospital (A&E) and they ended up giving me a follow up. And since I didn't really know the severity of my disease, I simply went for follow up and never took any medication despite being given Pentasa. I have to add that doctor consultation is approx US$7 and medication for 3 months is just US$1 each. Probably why I didn't think my disease was big of a deal considering meds were cheap and I was quite immature and my parents didn't understand the disease either.

But the problem with getting the 2nd opinion is that I need to get all my blood work and past reports from the hospital and they won't just give it like that considering its 4 years worth of "Free" treatment. My blood work history and report itself would cost me approx US$1000.

And considering I am uninsured, I am just not sure if I want to be a financial burden to my family. I already feel like a burden when they have to modify the meals just to accommodate my needs and come with my to the hospital.

I am 19 and year 3 university student so I am hoping once I get on my feet, I will be able to get my reports and have 2 doctors (Government and Private) for 2 opinions all the time but i think it might be too late. At this point, I can't really blame my current doctor for anything considering he has to look through many patients and his stress level as the hospital allocated a single "associate consultant" doctor for severe cases whereas other mild cases, medical graduates/trainees with few years of experience are appointed.

 

[Tesscorm]

It can be tricky navigating the medical system. :ymad:

Six weeks of EEN and one week of IV flagyl took my son into clinical remission (no outward symptoms but still inflammation) so do try EEN. As far as the nausea you mentioned, not sure how normal it is... but, I have heard of others who had the same problem. You may need to try changing brands or simply drinking it a bit more slowly at the beginning. Make sure you're getting enough calories - my son was getting 3000 calories per day. Different GIs have different rules but my son was allowed clear fluids while on EEN - pop (no coke, pepsi, etc. - clear only lilke 7 -up, ginger ale), gatorade, freezies, popsicles (no chocolate, caramel), jello and broth (nothing in it, ie pasta, rice). The broth especially helped as it gave him something warm and savoury.

 

[Clash]

Ensure and boost made my son nauseated. The texture also made him gag. When he needed weight gain for surgery he opted for the ng tube and moved to a px'ed formula. It was more broken down so he did better with it.

There are other formulas that are otc like orgain brand. Maybe try the boost or orgain. Also maybe check to see of there are any others you could try. Hopefully you can find one that doesn't cause you the nausea.

 

[Kancer]

I started Ensure, Flagyl , Levofloxacin 1 week ago. The course for Flagyl and levofloxacin ended 2 days ago. I stopped ensure the very next day after taking it because I have a bit lose stool. Not watery but extremely small.

I was scared Ensure might have caused this but I came across things online the antibiotics could cause Diarrhoea. I have been having it for nearly a week now (Max 3 times a day) and despite finishing my antibiotic course 2 days ago.

Is it normal? I am starting to get worried but I haven't lost much weight. Maybe 0.4KG

Hoping for some advice as I am starting to get worried

 

[Clash]

Antibiotics can definitely cause D. Some that are on formula experience D i.e. liquid in-liquid out, others experience C. It just varies from person to person.

It can take longer than the period of antibiotics for the D to clear up if they were the cause.

My son wasn't on full EEN just supplemental and he did experience looser stools when starting.