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03/31/2012 05:44 AM

I need advice on the best way to reduce my dosage

zenith123
 
Posts: 42
New Member

About a year ago I completed a withdrawal program from Benzodiazepines - I took Mogadon for many years and was switched over to Halcion at my doctors suggestion. I soon became tolerant to it and although I went to several doctors for help, not one diagnosed my problem. I found a forum and was advised to cross over to 6.25mg of Valium and i slowly tapered to zero from there. The withdrawal played havoc with my adrenals and I had lots of sleepless nights up with adrenaline and eventually around 6 months after I completed the taper I was diagnosed with adrenal insufficiency.

I received a lot of conflicting advice on how to deal with this AI and eventually I was put on 20mg SR Hydro cortisone. The result was heart palpitations. 20mg of DHEA was added to the mix, which was quickly reduced to 15 mg, but that time i had also slowly reduced the Hydro cortisone to 10mg.

A few weeks ago my blood tests revealed that my cortisol levels were up to 790 - those tests were taken in mid February. My doctor told me to reduce the DHEA which I did over a 3 week period I reducing it to 10mg but I still feel horrible. I am not sleeping, I am suffering from night sweats and I feel exhausted.

I decided to see another doctor yesterday and the advice I received this time was to stop taking both for a a few days then to go back on half dose, 5 mg of Cortisone a day and taking 10mg DHEA every 2nd day.

I am concerned about the quick reduction - my understanding has always been that I should reduce these hormones slowly.

I would really appreciate advice on this because I have a long awaited new job and i would hate to crash and burn again now! Suggestions would be gratefully appreciated!Silly

Post edited by: zenith123, at: 04/02/2012 10:00 AM

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03/31/2012 07:49 AM
LittleMissMerrySunshine
LittleMissMerrySunshine  
Posts: 1811
Group Leader

Well, I can only advise you based on my experience, which is limited to weaning down from stress doses after major illnesses.

I have found that generally 5mg of HC is the most I can come down at a time. However, the lower the dose, the less I can cut it. So, for example, if I am coming down and am at 50mg, dropping 5mg isn't such a big deal. But if I'm at 30mg, dropping 5mg can be almost painful. At this point, it might make more sense to cut the pill in half and drop by 2.5mg at a time.

As for how often to adjust the dose down, you can do this based on symptoms and timing. Generally when I drop like this, I will have a couple of rough days, which I'm sure you have experienced already. I will wait those out, give myself an extra day or two, then drop again...making sure to correlate that with whatever is going on in my world at the time. So if I am trying to work, I will wait until Friday, knowing it won't hit me until Saturday.

As for the DHEA, I really cannot say. I used to take it; I have started and stopped several times with no noticeable effects, but that is just me. Other people on here might have differing experiences with that. In my opinion, you should wean gradually from it as well. What will it hurt? I seriously see no drawback to a gradual reduction, but I do see potential negatives from dropping too quickly.

Part of the problem is the doctors cannot appreciate what it is like to come down from the steroids. Last time I had a major medical problem, last summer, and had to do this, I decided I needed a detox spa. The side effects are not pleasant!

Good luck with it. And welcome to our board. Feel free to ask more questions.

Cynthia


03/31/2012 01:05 PM
zenith123
 
Posts: 42
New Member

Thank you for your answer Cynthia. I was prescribed slow release HC & DHEA which comes in capsules. I found that the slow release really helped me, especially at first but the drawbacks are that it is difficult to divide the dose accurately. At the moment my symptoms are quite severe - no sleep for 6 days and my body feels like it is vibrating internally, especially at night. I get brain zaps and flashes in my eyes though not too badly. Is it unsafe to just stop taking these hormones for a while to allow them to reduce to a lower level then introduce a more stable dose? I must say I am a bit scared about all of this.... it happened quite quickly and the symptoms seem to be increasing rather than decreasing as I lower the DHEA. Quality of life is quite poor at the moment and I have a new and demanding job.

04/02/2012 09:55 AM
zenith123
 
Posts: 42
New Member

It is 2.30am here in Queensland Australia. This will be day 4 of not taking any DHEA and HC to quickly lower my cortisol levels of 790. I feel horrible. I don't know what triggered my symptoms tonight because the night before I slept quite well....I got a couple of calls for tutoring (I am a part time teacher who also does a bit of private tutoring) just before I went to bed and I am wondering if my symptoms are my body telling me that I don't need the extra stress right now or if I should go on to a half dose of DHEA 5mg & HC 5mg as my doctor advised me to do after a couple of days..... The truth is I don't know how to read my symptoms or what they are trying to tell me. I feel very shivvery and shakey in my body though things feel better quite quickly when I get up - this feels like elevated cortisol to me but I also know that when my AI was in progress I had a lot of problems with adrenaline, especially at night before my cortisol levels dropped to morning 29, Midday 13, evening 9, Midnight 5. I am very confused and would appreciate advice.

04/03/2012 12:45 AM
zenith123
 
Posts: 42
New Member

I decided to take the 5mg HC and 5mg DHEA at breakfast this morning and so far so good. I'm feeling almost comatose from lack of sleep but I went for a long walk in soft sand and quite windy conditions so hopefully my body will be as tired as my head is by bedtime. This is really difficult to work out and very confusing.......hope i did the right thing.... hoping that 5mg HC is enough because I have no idea waht other adjustments I should make. I have a docotrs appt tomorrow and will get Monday's blood test results.

04/03/2012 06:11 PM
LittleMissMerrySunshine
LittleMissMerrySunshine  
Posts: 1811
Group Leader

Zenith,

I am SO sorry I did not get back to you sooner!I am glad you are going to the doctor, because I am honestly not sure what to tell you. I don't think it's a good idea to abruptly stop taking the HC. (DHEA I just don't know.)

I've not heard of HC in a release form except for Plenadrin, which is not yet commercially available. It is still in trials. So I'm not sure what you are taking or how to advise you.

I encourage you to speak with your doctor asap! Please let us know how you are doing.

Cynthia


04/04/2012 12:37 AM
zenith123
 
Posts: 42
New Member

Hi Cynthia,

Thanks for your reply - I know what it is like about replying, I used to be a moderator on a different kind of site...so I know it can get busy.... and you do have to have a life! I will say though I am feeling rather lost so your reply is comforting even if you feel like you are not sure what to tell me at the moment Smile

I have been to the doctor today and my cortisol levels have plummeted from 790 to the latest figures which were in red....180pmol/L. DHEA levels were 430 on the lower side of normal (50-1900) This happened in just two days off both the SR HC & DHEA. Now I have to get another blood test tomorrow - ACTH, Cortisol & DHEA at the same time to see what is going on.....

What is a ACTH injection used for? She mentioned something about not really wanting give me one. I am off the SL HC now and on to Hysone 4 x 4 times daily, beginning with 8mg in the morning. I am a bit worried about dosing during the day when I am teaching....I kind of forget when I am working...the times do not work into my breaks but I will figure out something. DHEA is now - 4-5mg daily or 10mg every 2nd day. I have been given a bunch of supplments to try to build up the adrenals.

The SL Cortisol & DHEA was made up by a compounding pharmacy, I just needed a script to send to them and they return it in the post so it is not a brand of any kind.

I am feeling all over the place at the moment... might have something to do with unblanaced hormones. Sad

Post edited by: zenith123, at: 04/04/2012 12:42 AM


04/04/2012 02:52 AM
zenith123
 
Posts: 42
New Member

I just looked at a PM that Bob sent me the other day and he cited a study saying that for 58-59kg people that 15mg of HC a day was better than 20mg and to dose at 7.5 Am, 5mg noon & 2.5 evening.... great, I have 4mg tablets. How on earth do I do that? 15mg feels better to me - I tried 20mg before but that was without the DHEA and I had heaps of problems with heart palpitations so this feels like a better idea.... it is a place to start from. It looks like another trip top the doctor tomorrow. uugh.... feel like I live in a doctor's office at the moment.

I'm thinking that 8, 6 & 2 (16mg) might work. Would that be a plan? Until I can get some 5mg tablets....Dizzy

Post edited by: zenith123, at: 04/04/2012 03:19 AM


04/04/2012 03:32 AM
bob3bob3
bob3bob3Posts: 4213
Senior Member

Hysone also comes in 20mg tablets. My GP prescribes me both sizes PRN as well as the Dex. Standard pill sizes differ around the world. In the US I had 20's and 5's. Pretty sure they also had 10's. 10's are common in the UK and Korea. As a side note Prednisone is common in the US as 20mg, but Prednisolone at 25mg is the one in Oz. Prednisolone has slightly less clout, so you'd need more anyway..

Obviously though you change the dose size to the nearest pill or half pill multiple. ie 7.5/5/2.5 would be 8/4/2 or 8/4/4 with your pill timing (and thus meals) adjusted to curve fit. You aren't however at a curve fit tuning stage yet. No real point starting that for at least a few weeks and allowing for the other dependencies like DHEA etc.

Did I say 15mg was better than 20? Pretty sure I didn't. Everyone's need will be different and the GC is a long way from Sheffield England! Its good as a starting point of course, then a review in a few weeks. The big importance is the declining dose size sched.

More steroids will always generally feel better, up to the heart palps and high BP level. The trick is not to overdo it. This is also part of dose tuning. There is also a "recovery period" where you need a higher dose to fix the damage that has been done by not having enough for a while.

Bob


04/04/2012 01:06 PM
Jojy85
Jojy85  
Posts: 59
Member

When I have to reduce mine, I usually do it 2.5- 5mg at a time. My body tells me if I am doing it too quickly. I recently went from 25mg down to 15mg... I just listened to what my body was telling me. I would get dizzy and had lower BP's when I went too fast...so I went from 25mg to 20 for about a week then down to 15mg. so I say listen to your body's sighs and symptoms. Laughing good luck!
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