Just wanted to run another question by you guys. As far as the skin darkening associated with Addisons, is that only when one is going in crisis or diagnosis and such. My sons skin has darkened quite a bit int he last few weeks. Also if he ever gets a scar , even a very minor one, it is there to stay. Is this normal? I cvalled the endo yesterday and he took a bunch of blood for testing. SO I hope I hear something soon.
I was sent the blood test order form and noticed there are alos a lot of test having to do with thyroid onthere. ANyone got any info on this?
Also due to joint aches and stuff he was temporarily taken off the growth hormone shots. My son was very pleased! But he seemed to be picking up with his growing on the shots.

The skin darkening you describe is seen in Addison's. It is caused by elevated ACTH. Kyle's steroids may not be at the right dosage...or covering him all through the day...but this is when an ACTH test would be in order.

A symptom seen in hypothyroid is a yellowing of the skin especially the palms of the hands ad soles of the feet.

At a support group I was in in Seattle there was this teenage boy who was sooooo dark. He was on a high amount of steroids, I think about 40, and his ACTH was still really really high. The docs couldn't seem to get it down. He had dark in his creases and his scars were dark too. How is your sons ACTH level? If it's still high I'm sure that's why he still has darkening. I don't know if they were able to help this young man as I only saw him twice.

(grh)

Im not sure what my son's current ACTH level is. I know it is one of tests ordered though. ALong with Renin, IGF-1, IGFBP-3, Thyroid Free T4 and TSH, and a basic metabolic. These tests oughtta' be able to tell the doc if he is getting enough steroid right? This is the same kid a few months ago that we thought was getting too much steroid. Go figure.
I didnt notice any increased yellowing in the palms or the soles , mainly his face arms and especially his hands knuckles mostly. but a little bit of all over darkening. I hope he is ok. The doc told me to increase his prednisilone by 1 each time until we get teh results back. I had no idea tough that thyroid function could have an effect on color as well.
My sons scars are really bad. I mean if he just gets a little scratch it will scar something awful. He has a scar across his forehead he got from a fingernail scratch and the kids call him Harry Potter. lol The scar looks worse tahnt he actual 'wound' did. Are people with Addisons more likely to scar easily?

What you are describing sounds like Addison's...and the tendency for scars to show for a long time is still the AD I'd think...

I still wish his doctor would change him to hydrocortisone...much better for most of us.

yeah I would rather see him on hydrocortisone as well, but in the last couple months we have been having major issues getting him to take what he has to twice a day. I bet if we go to 4 times a day, he will really be stressing, but what someone said earlier about his dose maybe not covering him throughoput the day may have hit the nail on the head. I think it would be best to take less more often rather than more less often. Catch 22 perhaps. ANyways I will keep u guys posted on what happens when he calls back with the test results. TY!!! :)

....what is he on again? And have you asked/told the doc you want him on hc?
Maybe you already know this....but the dark skin comes from acth levels staying high long or often enough . An effect of high acth is that it stimulates the production of melationin in the skin.....hence the overall darkening. Acth levels flucutate.....and I believe that the level has to be fairly high for a while before it has that effect. How long after the lowering of his dose did you notice the darkening?

It would be interesting to know if anyone good at researching wants to see at what level the acth has the melatonin stimulating effect.......

Have you tried things like mederma on his scars? also...my mother the nurse was adamant that using neosporin on cuts etc helps healing and scarring.....

Diane

Kyle I believe is on Medrol and the dose change was the switch from prednisone to Medrol...

There was concern over growth hormone suppression due to longer acting steroids here somewhere rt?? If this was the case then perhaps he would not need the shots??? I'm sure I missed something somewhere here...??

Wouldn't it be unusual to have the darkening while on medrol unless the dose was really cut...and also I would think you would see other symptoms.......how is he in general w/ energy etc...any changes...? What was his dose and what is it now?

Why won't the doc try him on hc? did he ever try it?

Sorry if I am asking things you posted way back.....memory memory oh how I miss my memory.....

Diane

Prednisone is 5 mg equals 20 mg. HC and Medrol is 4 mg. equals 20 mg. HC.

yeah Kyle is on Prednisilone (liquid form) The doc upped it from 2 mg to 3 mg when i told him Kyles skin was darkening.
As fas ar energy and things of that nature, sometimes he does compain of being tired but moslty it was muslce aches and weakness. They chocked up the mucscle aches tothe growth hormone and stopped that for a week and he has had no aches but he does have persiostent irratability. He is so moody. As fas as teklling how much of that is the AD and how much is childhood. But one of my main worries with Kyle besides the health issues is the school work. he went from straight A's in advanced placement classes all through elementary and now he is in 6th grade and he is making Ds and Fs. ONLY Ds and Fs. I just cant help but wonder how much of his schoolwork is affectee bny all these happeneings. I get so worried about him at times. And when I try to ask him questions about the AD or things like that he gets itrritated. I think he jsut wants to stop talking about it and be normal. So I try to refrain from bringing it up when it is not necessary but sometime I need to know.

I don't know the life of prednisilone..I will look it up....anyone know off-hand if it is shorter than medrol but longer than pred? Seems that might be rt?? (or Jo, is medrol the same thing?? I am too tired ...need to write tomorrow)

The other tired moody symptoms and his schoolwork which could be suffering either from the tiredness or trouble concentrating or both Could be he's not on enough...esp when coupled w/ the skin changes you are seeing......
I guess see how he does on the 3 mg.

Why is it he doesn't want him on hc?

So are you saying that to your understanding he switched drugs And lowered his overall dose ( so....did he go from 2.5 mg of predisone to 2 mg of prednisilone )(I don't know if spelling is rt either?)
And the changes in skin tone have been since this switch right?

As far as school, are they making any accomodations for him...like extra tutoring help or anything?

I will re read things tomorrow and see if it all makes sense...just waiting for my newly diagnosed hyperthyroid cat to come in for the night...she starts her meds tomorrow....she is very skinny!

Diane

Prednisolone

In the converter prednisolone is converted same as prednisone but methylprednisolone is 4 mg. equals 20 mg. HC. But the above link calls prednisolone Medrol...so, I am confused.

Prednisolone / Medrol

Medrol/Prednisolone

So, now I think they are the same...???

My cat Iris is borderline hyperthyroid...not enough to treat yet, but it will need to be checked again to see if it changes. Last week she was pacing the floor and meowing...but seems fine now.

Medrol is a brand name for methylpredisolone.....just like cortef is a brand name of the drug hydrocortisone.....
So yes they are the same...if he is on methylprednisolone he is on generic (probably).

It is a longer acting steroid...

But now I re-read Jo's post about the converter chart and want to see how prednisolone And methylpredisolone is listed....?


WAS it a switch for sure from prednisone to the prednisolone? Look at the bottle and see who the manufacturer is....then go to the Electronic Orange Book (http://www.fda.gov/cder/ob/) and look it up.....you can see which companies make which forms of drugs.....

I am still kinda confused why the doc would choose medrol if he has growth hormone issues..?

Diane

Hi ok I know I am being a pain..but I am interested in figuring out what is going on w/ Kyle...!! I tried to search posts....found some but then lost it..(??cause I have lost it myself!) I did see that yes he was started on prednisone at first and now the prednisolone....

Was he diagnosed as primary? And has his dr addressed the question of growth hormone suppression w/ the longer acting steroids?
I do remember reading somewhere.....forgot what child it was...that sometimes some kids do need a longer acting steroid.....I don't know why...my guess is that they have speedier metabolisms than adults and so would metabolize or 'use up' the steroids sooner....I will try to remember who that was...??
So, it may Not be wrong on the part of the dr....just trying to figure out the growth hormone supression thing...

Might it be useful knowledge to know what his evening or even early nighttime acth level is?? Or his 3 am acth and cortisol levels? Or really just morning before and before meds acth and cortisol levels...??

Has he had that done since being on steroids?

Acth levels are not always useful but are sometimes....??

I need to read more on pediatric addisons and also growth hormone deficiency....

Diane

Hi. Thanks for the concern about Kyle. Sure feels like I get a lot more feedback by posting stuff on here than I do from his endocrinologist.
Yes, Kyle has primary Addisons. Heis medicine says it is generic form of pediapred. Kyle's is a pretty complicated case it seems. He was on the pillf rom of Prednisone and then the doctor switched him to the liquid form and lowered the dose a tad to try to speed up his growing. My son is not short for his age but he said Kyle went from like the 95th percentile in growing to like almost nothing over a years time. he said Kyle should be going through a growht spurt and we weren't seeing any growing over months and months, actually over a year. So I was concerned that he was getting too much steroid and that was stunting his growth. I know of no one in my family who has growth issues. So he lowered the dose and switched it to Prednisilone. I think he went from 2.5 (half a pill) to 2 of the liquid. That was months ago. Anyways, the insurance fuinally approved the hormone shots and he started those in late January. Now last week he stopped the shots because Kyle was having joint pain and the pain has stopped so don't know his intentions on starting them back up.
I called him about the skin darkening and he told me to up Kyles pred dose to 3. took Kyle in for some blood tests and havent heard back from him in over a week. I have still been giving Kyle the 3 of Prednisilone until I hear further instructions. i would have thought he would call back by now.
Im unsure why the doc is so reluctant to switching Kyl;e to Hydrocortisone. Ithink the main reason is because he would have to take it 4x a day. He said he likes to wait until the kid is older cuz noncompliance with meds is an issue especially in young kids. There has never been a time (except when firts diagnosed) that they did any kind of testing over time to see various levels throughout the day. I am suspecting he is runnin out or running low in between doses or soemthing but Idk. I do know that his skin is darkening. Now he aint black or nothing but I do clearly notice it especially in creases and things liek that and his face. ust makes me wonder. His skin always looks a bit off and figured that was normal for people with Addisons.
I donthtink Kyles case is getting the attention it needs simply because I am on state insurance. Not that I am complaining too loudly cuz without this we would really be hurting, but somehow I feel thrown to the side.
If I pressure the doc enough he may consider switching to HC but that will be difficult. BUT my son does have major issues with taking htese pills and I am thinking switching it to 4x a day would only exascerbate -sp the problem. But if he is running low and is not getting what is required to function right something has got to be done.
Im not good at wording things too good, so if I confused anyone I am sorry. Sorry this post is so long too, if anyone actually made it to the bottom here. :) Thanks for all youir help. It is apprieciated more than u know.

You know if Kyle can come to the realization that this is what will make him feel better then maybe he will be willing to take the HC in more frequent doses...it does seem as though he is not doing well on the prednisolone or prednisone and giving HC a try would be worth considering. You know the other young boy on this forum is younger I believe than Kyle and Zac is taking HC...so it can be done...just need Kyle to be ready to try it!

How is Kyle on the 3mg. prednisolone?

The 3 of Prednisilone seems fine. I mean i don't see any difference in him. His skin is the same but I guess it would take a it to see improvement with something like that..?

Yes it would take some time to see the skin changes...do you have any idea of how long it took once the med was changed to notice the darkening? I hope yo have a journal! If not sure would be good to start one...

Seems to me....that....the dr is trying to address the growth issue etc by lowering the steroid he is on...not looking at the possibility that it is the KIND of steriod he is on, Not the dose, that could be the issue and needs to be addressed. Seems that by lowering it, w/ the skin changes, and the school and grade issue...which of course is not the real issue but just a symptom of the ISSUE, and his grumpiness that you see....all point to being under-replaced.......

What exactly is the issue w/ taking the meds? Does he have an aversion to all meds, to pills themselves, a swallowing thing, or just more an acceptance that he needs to do this w/ the addisons?

I think if you can address whatever the issue is....then talk to the doc about a trial w/ hc.....I do think that you can be really insistant and Not ask...tell him (and bring him documentation...etc...) of why you want to try this. We can try to find out how long on hc it might take to then have the growth hormone re-tested....I really don't know anything about GH.....does it take a while to 'come back' if it has been suppressed, etc? And also how long one might think he would need to be on the hc to expect to see his growth pick up?

(so he switched and was lowered to 2 mg at the same time and that was how many months ago? )

Time to be a detective!!
Diane

You know Wanda and I and others have been saying all along that it is the type of steroid that is causing the GH issue...I just wish this doctor would listen and try HC...what harm can it do? And as Diane said you may need to just tell him you want Kyle on HC! Also, Kyle may have to come to the realization as I said before that he needs this medicine and that it is a good thing and will make his life so much better...I truly believe he will feel better on HC and not need the GH.

You know I am throughly confused with the prednisolone and methyprednisolone...I have found references that say the're the same( Medrol) but the converter chart seperates them...prednisolone has the same ratio to HC as does prednisone. :wacko: :unsure:

I will search for any info I can find on recovery time of GH release after suppression...but the longer he's on the prednisolone the more suppressed his GH will be...and the longer I'd guess the recovery.

My skin was dark on my back...in just an area where I couldn' reach, and I thought it was from not reaching it with sunscreen. But, years passed. The dark area got larger. After my diagnosis and treatment was started, the dark area faded quite fast. It must have been just a few months.... like 3 or 4. Of course, I was not in the sun at that time, either.

Good luck with Kyle. I am currently on prednisone and have trouble getting started in the mornings. Hydrocortisone was quicker. I think I will switch back when I go to the endo in early May. Taking it more often is a problem, but worth it, I think.

With Kyle, would you have to get a school nurse to give him his meds?

JOAN

Joan, have you ever tried a combination of hc and pred? I am trying it now after yrs of hc and wanting to try the combo....My reason is that I poop out in the late afternoon and evening.....and want to see if I can stay more 'even'. So I am taking my 20 hc in the am, then 6 ish hrs later, 1 mg pred, and 5 mg hc. Too soon to say as this is the week I feel best all month anyway...but I do think it is helping my afternoons.

You can do it any way you want....you could take some hc in the am and also the pred....just add up the totals....maybe that would make mornings easier....

If this seems to be good for me, I may cut my morning dose a teeny bit, just to 17.5. I know I can't go below 25....sometimes can maintain at 27.5.....

Question...how do you think your mood is on prednisone vs hc? Do you feel a difference in moods...?

Diane

I took a combo for a good while and then a year or better ago I went to all HC...I like it better. I really saw an improvement in my mood when first given HC, even though I was still taking a little pred...

Quite a few people report feeling more moody, irritable...that kind of thing..on prednisone....that's why I was asking.
Karen M. is on prednisone rt now....had to increase and is feeling that way.....she is trying to do a combo instead while she is increasing and think it is helping the mood stuff.....

Diane

I remember how deeply depressed I was on pred and when I took my first HC pill I saw a difference! I love the stuff! I had no problem going to all HC even though Susanne was warning me I mightn't like the highs and lows but I don't really notice it that much...I just take some extra if I feel too low...

I wonder what it is about the prednisone that is so different it does this to folks?
very curious....

Diane

Kyle's mom..! I don't remember your name!!
Would you e-mail me.....?? dmcc1446@yahoo.com

Just wanted to discuss something.....thanks.....
Diane

yeah the doc was saying if he switched to HC the school nurse would have to give it to him. Yeah if there is any kind of positive affect on his mood if he htakes HC then I am so for it!
No dont keep a journal but that is a fantastic idea.
Kyle used to take his medication fine. Now he has to be hounded and told over and over and over. It doesnt matter if it is pill or liquid but he does take both (liquid prednisilone and pill Fludrocortisone) And this all became a million times worse with the addition of the Norditropin growth hormone shots. For the first month he gave himself the shot and then he began to throw firts every night and I had to give him the shot and he would complain. Then he started to have the joint aches and stuff so the doc advised me to take him off the shots for a week....havent heard back from him. BUt anyway it doesnt matter what kind of medicine it is, he hates it. He had to take 10 days worth of antibiotics a few weeks ago and they were bighorse pills. We actually caught Kyle throwiung htem away so he would have to take them. Now we watch him like a hawk witht he steroids and stuff. I'll ask him to take his medicine and he will walk off in the hiopes that I forget. It is usually a daily yelling match when it is medicine time it seems no matter how mary Poppins I try to be. He jsut wants it all to go away but it he will have to take this meds forever. I don't know what to do to make it bette4r as every time I try to discuss it - he gets annoyed. Im telling yall, my son is right at the preteen age that can get quite mean at times and I tr to avoid all confrontation with him. But I think the moodiness and 'meanness' could be a part of the med thing. idk.
ANyway I wrote another novel here. SOrry.

Oh andin darkening happened gradually so I cant really pinpoint when it started.

...w/ the skin darkening....this is precisely why a journal is needed, esp when trying to get meds straight. It also gives the patient credibility w/ drs.....memory is just too subjective...and so is so much of the things that go along w/ addisons....like mood, energy etc....it is a subjective experience....
So if you can say...well, here it has been this many days and his skin is darkening etc....and his dose at that time was.....it really helps....
Also...soooo much of figuring out what we need to bump up for etc...is hindsight learning....by writing down when he is sick, and how much you give him, and when he has 'low symptoms' etc....you will be able to look back and at some point will see patterns.....
I recommend making sure you note any med changes rt in the notebook too.....

As far as the taking meds thing.....if he doesn't see one, a good counselor would be a good good idea to help him learn how to cope w/ his illness......it can take time to find one that works...and I find it helped me to go first by myself and see how I liked the counselor....

Where do you live.....I know a great counselor in Worcester....you are in MA right?

Oh yah...if you think the preteen stuff is fun just wait for the TEEN stuff...doing that now....not fun!

Diane

PS....you actually might find that the school nurse has less of a problem w/ giving the hc......kids often won't act the same way w/ a non-parent.....if it is a good nurse she might even help him deal with it.....most school nurses have experience w/ other kinds of things like nebulizers, inhalers, diabetes,......Try talking to her about it.....maybe give her the Addisons Owner's Manual....??
Diane

I was just wondering w/ how he is doing in school rt now and having it caused by a 'physical cause...".....he is probably eligible for a 504 plan.....it is not like an iep and doesn't come under the spec. ed dept.....but it will make him able to get accomodations like tutoring, more time for tests, adjusted school day if needed...maybe an academic support class if your school has one...etc...it is kind of a subjective thing......
It might help and be a good idea to address the issue now rather than later...the longer it goes on and the older he gets..the harder it will be on his self-esteem....When he gets his dosing rt etc etc....he may very well not need it....but it will be in place if he does....
Just a thought....
Diane

Dianne, Excellent suggestion! My son who is dyslexic had a 504 plan but it didn't help enough, we needed to go up to an IEP (Individualized Education Program). These are helpful to kids that need a little more help (and understanding) from their teachers and the school. If he needs extra help because of his illness they HAVE TO give him accomodations by law. If I can help at all because of my experience please let me know
Maureen

It also functions to make the teachers Have to acknowledge the issues...and if they don't do so, you have the backup to enforce it...
We are currently doing the 504......and also possibly an IEP if it isn't enough.....issue is depression interfering here.....
Diane