If you drop a dose, and say your body does not like that, how soon would one feel side effects of the dropped dose... Hrs, days, weeks? I know we are all different, but wondering if I drop my dose of HC can I see a reaction 9 days later..or would one see it sooner.. I have a friend who is also on HC and she too is just trying too DROP her dose, not get off it, but lower it.. and we are obsessed with reaction time on this. we read by a poster...( not on here )that a reaction could show up as late as a month, is this true?

We were thinking if one really needed that dose and needed it badly that we would see a reactiuon with in a few days, or is our thinking off?

Many of us can feel a missed dose soon...I forget my 11:00 AM meds yesterday and I fwelt "funny" early afternoon but didn't know why until I found them late last night.

You can reduce your dose per day and get by with it until your system is very depleted and then the least thing and you have to bump up...sometimes you know immediately that this is not going to work. As a friend and I were just saying, you're always on the edge...but in your case it may be that your body feels the withdrawal of steroids that it has become accustomed to having and you just have to be patient and push through it...bumping up if you get into real trouble but if it's joint pain, aches and pains this can happen with a taper...nothing wrong just your body having to adjust to less steroid.

I feel a missed dose fairly quickly...anywhere from an hour to three hours. I get a weird sluggish heavy feeling that is a big sign for me. I have forgotten a dose and discovered it at bedtime and then knew why I felt so bad during the day. I take 25 mg daily in 2 doses.
Maureen

I hope others reply I am curious too see how each one of us reacts too this, if anyone has tried too just taper down..Thank you ladies for sharing with me :)

Missy,

You should feel the taper within a day if you dropped too much, but can't imagine not feeling it for 9 days. If you drop by only 2.5mg you really shouldn't notice it.

I have never tapered more than 2.5mg HC at a time. Staying there for two weeks before another taper. Tapering by more than that or too often can get you in trouble. We are all different, but that is what worked for me when I tapered from 30mg HC to 20mg.

If I miss a noon dose I usually know it by 3pm.

As some one who doesn't have addisons but use steroids for inflammation, allergies and asthma. I am not usually on it for long, never more than two weeks before a taper until this time but I taper fast.

When I start, I halve the dose, for a week then take that amount for the second week every second day then stop (I take either pred or dex which are longer acting than hc) sometimes if symptoms return to the point my other meds can't give control then I increase to the last level for a few days before tapering again.

I can taper from 50-75mg of pred in three weeks with no problems, yes you can feel a bit off coming off but that is normal to a certain extent. I use the guideline of whether or not I can push through it on that day, if I can then I keep going if I can't I will increase for that day only. I am on inhaled steroids for asthma as well as nasal steroids for allergies so i probably still get some general effect on them that help also.

One of my dr's is amazed that I can taper so fast, it is recommended but many find it hard, some will need to go onto a residual dose for a month or more to let the adrenals kick back in after they have been on it for a while.

AS the others that have posted all have dx'd addisons and will never taper off, their tapers are to get down to a minimum daily dose that allows them to function, with adrenals that are still functioning even if the function is impaired (this can occur after ONE week on steroids) the taper is usually faster and it is the final taper that can take the longest. When you come off them altogether, you need to be aware that the adrenals may still be impaired if you have an illness or injury and will not be able to cope with this without going back onto steroids and if this happens try for a low dose. You would need to taper as soon as the need was over. Remember though that you were prescribed the steroids for a reason, lowering the dose may cause that reason to flare again. Listen to your body, talk to your dr on "why" you want to taper and how he wants you to try and ask what is his reasoning if it seems unusual. Most people taper to slowly, the slightest ache or pain is a reason to increase again, this is not necessary in general but you do need to listen to your body and know what you can put up with and what you can't and be aware if it changes. HTH's

Tapering from high dose steroids when you don't have addisons is very different & a much faster taper for sure.

Sure glad you are OK Sue. Reactions from a food allergy sounds so scary!

Thanks Wanda, still wheezy but I am fine, this sort of reaction doesn't really stress me too much, when i feel my throat close that is when I get scared.

As Missy seems to have some confusion over what is her dx, I felt it was important to explain the more "typical" taper that most people either do or attempt and the precautions you need to be aware of as it is different to those with addisons when underlying issues can make a bigger difference than someone with even partly functioning adrenals.

Steroids can become a vicious circle, I know my allergies are worsening and I am having to take steroids much more frequently now to function, it is hard to know if the steroids are a part of the problem or if it is my general hyperactive immune system but when I need them, it is when it is dangerous NOT to take them. I am religious in how I taper as with Josh and meeting all you guys i am so aware of the risks. i do love them though, it is amazing how much better I feel on steroids, my hands and feet don't swell, i don't bloat, i sleep like a log and have no real side effects at all so I am fortunate. I usually lose weight on pred, i am sure it is because it is helping some unknown issue that is causing the swelling and bloating.

I hope all is well with you.

Missy, I too tapered 2.5 mg. HC per day when I reduced my dose...but your body can need time to adjust to a lower dose...and aches and pains can happen but it will soon go away as you adjust to the lower dose. I have seen those being treated with steroids as Sue is being and they still have to taper to allow the adrenals to recover function...and you can have discomfort doing it if you've been on them very long...it is just normal. But we are different as others have said. We will never be off steroids and if we taper to reduce our dose we have to watch for signs of under-replacement. I know an Addisonian friend tapered down 5 mg. and maintained for a good while and she had to go back up...it just caught up with her. I do pretty well on 25 mg. per day and after making it until bedtime Friday on 22.5 mg. , I toyed with the idea of try it but I think I'd be bumping up every day or so...so what's the point.

But I do think your body may need time to adjust to a lower dose and some discomfort is possible, but it's not necessarily meaning you are needing to take more steroid...

The reason I ask this is because.. I have had 2 med professionals so far tell me that I do not need too be on the steroid..this is why I am getting a THIRD opinion..one that my Kidney doc trusts as he put it *with his life*, I have never had a mes profession say this toome, so this comment I am sort of running with :).. Since I love my Kidney doc, I will trust his judgement..

what confuses everyone( docs) at this stage is.. I PRESENT symptomatic with Addison's disease, however when you put the whole pitcutre together..Blood/Pressure,CT Scans, MRI w/and with out contrast.. Pituitary and adrenal look great, as in no damage.., all the blood work that goes into this, and testing, it just does not SHOW addisons disease.... I will never drop more then 2.5mgs of HC, and this WILL be held for 30 days if not more.. Since my Period seems too be the BIGEEST picture for me. I do ok for 30 days on the drop.. but once my period shows up...this is WHEN all the bad issues happen, ansd again.. My period was not an issue before getting on HC, it wasn't until 3 months AFTER being on HC that this started.. So I was thinking the HC somehow put the skids on something hormonal wise...

I'm just in limbo at this point until I get too see the new Endo....I guess this is why I asl so many questions.. :unsure:

I went shopping last night, and cleaned out my house..too go gluten free, I really need too see if this can be the cause of some of my issues..not saying it is the SOUL cause, but what can it hurt too give it a try:)

Please know too all of you how grateful I am for all your help with this. It makes life easier for me when I can get others thoughts and advice on this issue.. (grh)

Progesterone

Progestrone is a precursor to cortisol and the adrenal glands produce the progesterone for the first half of the female cycle and corpus luteum at it's highest levels in the last half of the cycle.

Progesterone-cortisol interaction in control of renin activity /not aldosterone

Origin of serum progesterone during follicular phase of menotropin-stimulated cycles

Missy, when you say you present like an addisons, can you be more detailed...sorry ifyou have already posted this elsewhere. If you are bronzed, then hemochromotosis is a possibility for example, just trying to think of other things that may be worth looking in to.

Be aware though that your adrenals may be depressed from the steroids so you will need to taper slowly and be vigilant. You may be better to wait or ring the endo first to see how he wants you to taper prior to your appt or if he wants you to wait until you see him.

No I am not bronzed or antyhing like that.. after I had Lukie I was craving salt terribly, had excessive thirst, and diabtetes was ruled out 10 times over...I was pee'ing ALOT, horrible stomach cramping, nausea and I also ran a low grade fever for 8 solid months, until I got on HC, then the fever just WENT AWAY..anyway.. the pee'ing.. it wasn't so much that I was pee'ing it was the amount, not too be gross but I measured my urine output at one time and it was over 2 cups of urine ay one time in the bathroom..it was like a faucet that would not shut off.. .. and I rarely took alot of liquid in, I thought this was very odd...The faituge was insane, I could barely get out of bed, not sure if any of you can relate too that..but it was awful.. I could have spent days on end if I had not had kids. I ended up with allergies as well.. I had become allergic too everything, even my make-up....My rings.. I was told my immune system was shot.. I had a test done for immune system, and I forget the name of it, and my immune system after Lukes birth was very depressed..these were the things I was dealing with..the fatigue and Burning mouth syndrome was what lead me too a naturopath, who did Saliva testing on my adrenals, told me I had Hypoadrenia, and gave me the cortef...then I saw a few other docs after him, well more then a few, and I was labled with anxiety and depression.. this pissed me off... you have a baby and automatically your depressed..anyway it is a long story, but these were the things I was dealing with..

After I got on HC.. OMG.. the sun was shining *lol*.. I felt amazing, but as time went on, I tended too get sicker and sicker on the med, NOT better..So I really have no idea what too think any more..

Jo... I know about prges converting into cortisol which explains why I feel so really great during the second half of my cycle.., but what I am trying too say is.. I think the HC shut something off, because even when I was sick I never reacted too my period like that, and I had 10 periods before HC, and 4 period while ON hC.. then Kabam it was like someone flipped a switch in my hormones..wierd..

So how does cortisol or HC effect hormones, what would go wrong, or ary too make my body react like that? just the simple plummet in progesterone/cortisol?

I'm pretty clueless... ...

Missy, were you tested for diabetes insipidus? I think it is tested differently to diabetes mellitus...not really sure on the protocol for it but it is treated with a nasal spray.

HC will mask a fever and may well be hiding the reason you are having problems, if it is masking an infection then the infection may be getting much worse without your being aware of it.

If your immune system is down, are you getting gammaglubilin transfusions? (IgG) this would help bring your immunity up again. I know too well the allergic to everything and it is all getting worse. That has been my main problem for the past 10 years and now seem to be getting an new anaphylactic reaction each year. It is not fun at all and I fully sympathise with you. So many people think of allergies as being fairly easy to manage but when you get the cascade effect it is so difficult.

another idea you might be interested is the link to food. www.fedup.com.au is brilliant in this area, it looks at food sensitivity to food preservatives and additives as well as those found naturally in food. I swear by their website. I have gotten a bit slack lately with not watchingmy food as much and I am about to restart all over again. I know that I am saliclylate sensitive, any thing sulfur related at all. Ihave spent all morning refreshing my memory there and reading the newer info. Sue is a great support and will email you to advise if you need her to etc.

Just some more things to think about :D

Missy, read the above links I posted. There is a study trying to determine if ACTH suppression affected progesterone by administering dex and it did. You are suppressed if you have functioning adrenals since you have been taking HC...it may be hormonal in regards to your period. Steroids suppress ACTH.

Diabetes Insipidus is diagnosed through a water deprivation test. Also you are checked to see if you react to DDVAP ( this is also the nasal spray or pill you are then treated with). Unless the DI is due to kidney disfunction. Then DDVAP doesn't work...you have to control it by drinking enough water.

Diabetes Inspidus

Also, I believe when you dehydrate with DI your sodium can become very high.

Also, yes, many of us know what great fatigue feels like...I have urinated excessively until my urine was like water. Had painful spasms from electrolyte embalance. Tetany probably due to calcium being low. I have sat alone all day in pain dragging myself back and forth to the bathroom, freezing and just hoping I could hold out until my husband came home...didn't even feel like eating or getting myself anything to eat for that matter. Low blood sugars...so , yes, an Addisonian knows what unbearable fatigue is all about. :) In fact I still feel it. :(