Has anybody tried Hydrocortisone therapy?

[MNC]

hi again,

I posted a thread on celiac disease in the research section that may help you ...

As luck would have it, the author of "Recognizing Celiac Disease" was recently at my support group and gave a lecture on copper deficiency. Here's a link to her book ...

http://www.amazon.com/Recognizing-Celiac-Disease-Associated-Complications/dp/0978862643

I'm sure you could google copper deficiency and get more info too though ...

HTH ... X

PS. Thanks everyone for sharing your info on steroid therapy here. One never knows what one may have to try one day ...

Thank you very much. Where could I read what she said about copper deficiency? I searched in Google again for "copper deficiency and celiac disease" and found this:

http://www.ncbi.nlm.nih.gov/pubmed/18496230

http://www.ncbi.nlm.nih.gov/pubmed/19901719

Excerpt: "Copper deficiency is an uncommonly reported complication of celiac disease that has not received much attention in recent years. Copper deficiency may result in anemia and thrombocytopenia and also irreversible myeloneuropathy if it is not detected and treated appropriately. The prevalence of copper deficiency in patients with celiac disease is unknown. We describe 5 patients with celiac disease and associated copper deficiency diagnosed at our institution in recent years. All 5 patients had neurologic complications of copper deficiency and 3 patients also presented with hematologic abnormalities. We also review the literature regarding copper deficiency in celiac disease."

I don't know what myeloneuropathy is and when googling I don't find a definition either. Does anyone know? I guess it is neuropathy of the myelin and that it is a damage of the nervous system. That would make sense because I feel my nervous system totally sick in so many ways.

There seems to be many articles relating copper deficiency and celiac disease: http://www.google.es/search?q=copper+deficiency+celiac+disease

And copper deficiency and myeloneuropathy: http://www.google.es/search?hl=es&q...+deficiency&meta=&aq=f&aqi=&aql=&oq=&gs_rfai=

This one is very good and could explain so much of this horrible illness of mine: http://www.medlink.com/medlinkcontent.asp

So, given that I have had copper deficiency for at least 10 years in my blood tests, maybe I indeed have celiac disease after all. I guess that only time can tell if I get better when being gluten free. After 4 days off I feel no difference, but of course it may take many months. Let's see. I will do my best to stay off gluten. Now that I know this about the copper it supports the idea of this doctor.

Thanks a lot.

EDIT: I am kind of shocked by what I'm finding out related to copper. Copper deficiency alone may cause neurological disease and every kind of symptom resembling CFS. Also anemia and so on. What I don't get is why none of my lots of doctors visited in the past 10 years has ever paid any attention to my very low copper in blood. This CFS/Celiac doctor told me that I have the lowest copper levels he has ever seen, and he asks for copper tests to all his patients...

See this for instance: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2077729/

 

[Abraxas]

Interesting stuff MNC. According to the definition in wiktionary, you are correct that myeloneuropathy is neuropathy of the myelin sheath : http://en.wiktionary.org/wiki/myeloneuropathy

Apart from myeloneuropathy related to copper deficiency, I see that there are also tropical myeloneuropathies, one of which HTLV-1 retrovirus has been suggested as a cause.

Is it possible you take supplements with high levels of zinc in them, or have a diet high in zinc which could be reducing the efficaciousness of the copper you are taking? Alternatively maybe a higher dose might help?

 

[MNC]

Interesting stuff MNC. According to the definition in wiktionary, you are correct that myeloneuropathy is neuropathy of the myelin sheath : http://en.wiktionary.org/wiki/myeloneuropathy

Apart from myeloneuropathy related to copper deficiency, I see that there are also tropical myeloneuropathies, one of which HTLV-1 retrovirus has been suggested as a cause.

Is it possible you take supplements with high levels of zinc in them, or have a diet high in zinc which could be reducing the efficaciousness of the copper you are taking? Alternatively maybe a higher dose might help?

I don't think I take more zinc than anyone else. In fact I only took zinc supplements years ago. What is interesting is that I have been taking Copper supplements (2.5 mg/day) for 3 months (Solgar brand, the most expensive one) and still my test is low. The lowest ever.

I am going to concentrate in celiac and copper by now and will stay with this doctor who has cured my friend. I will double my dose of copper to 5 mg a day and will take tests every month or so while I am gluten free.

In fact this is hope and good news for me. While the XMRV thing develops I have something to have hope in.

Best regards.

 

[xchocoholic]

Hi MNC,

I looked and I don't think what she said is online ... And I'm not sure how much of it is in her book either. I know a lot about celiac now so I didn't buy the book. And what I don't know I can find easily now on the web ... www.glutenfreeandbeyond.org is a great source of info and a good group of people. I'm GFCanary over there ...

I found this article when I googled "foods copper" though. It says that liver has the most copper ... which is what Cleo said too. We all just gagged and made fun of it ... lol ...

This article also tells you what nutrients will cause copper deficiecies. BTW. I'm not sure about this but I used a cast iron pan to raise my iron levels and it worked great without any digestive distress. Have you considered using copper pots or pans ? Maybe even using a copper penny or bracelet somehow ...

http://www.healthvitaminsguide.com/minerals/copper.htm

Cleo basically spent over an hour telling us everything that copper does for our bodies. And those of us who are familiar with celiac disease know that copper deficiency is just ONE of the MANY nutrients that our bodies have been missing out on.

B12 and iron are thought to be the most common deficiencies but that may be because that's mostly what doctors test for. Over a year after giving up gluten, I was finally tested and found to be low in B12 and iron ... DUH !!! My GP was a pin head. And 2 years after giving up gluten, I was tested again and still deficient in chromium, D and E. Last year, 4 years after going GF, I started taking essential aminos and since they are helping me, no doubt, I'm low in those too.

Most of the celiacs in my group have or had thyroid, insulin, mood and cognitive problems. Over at www.glutenfreeandbeyond.org you'll see in the journey section how this group has recovered from many illnesses by giving gluten, etc. Similar stories are all over the web now though ... And many autistic children are responding favorably to the GFCF diet (DAN protocal) too. Most of them are gluten sensitive though, not celiacs.

BUT ... Even though I'm a celiac and I've verified that gluten will cause nuero symptoms for me, I have to add that I didn't just give up gluten when I started this. My digestive tract was severely damaged by the time I figured out that I was a celiac, so I had to give up most foods. EVERYTHING was hurting me by then ... I'm currently on a Paleo / med-low carb / low oxalate / high fat (EFAs) diet. But it took me several years to figure out that this was the best diet for me. Food allergy and nutritional deficiency testing helped but didn't pick up everything so you have to watch your reactions.

I'm mentioning this because I'm surprised that your not feeling better already. I could tell within 24 hours that dietary changes was going to work for me. I stopped feeling like I was jumping out of my skin all the time. And my narcolepsy was gone in less than a week.

It's well know that most celiacs are dairy intolerant because the destroyed villi had the enzymes to digest dairy in them .. less well known, is how many other food intolerances celiacs have.

HTH ... Marcia

PS. Watch out for the hidden gluten in those GF foods too. We don't have any standards in the US for controlling how much gluten is allowed in food and still be considered GF. So you can't tell how much you're really getting ... the website www.glutenzap.com is run by a group of individuals who are dedicated to testing these foods. Most of them, me too, are super sensitive to gluten so we knew prior to testing that these foods were cross contaminated ...

 

[gu3vara]

I've tried low dose hydrocortisone. I did badly on it. It caused me immuno-suppression and my infections seemed to go wild.



The 95% figure is rubbish. A minority of CFS patients do well on h/c. But many do really badly. If XMRV is the cause of ME/CFS (or even a passenger, though I don't see how that could happen), then I would be cautious taking hydrocortisone, as we know that XMRV has a glucocorticoid response element.

I think you are 100% right, I think HRT (cortef + testosterone + dhea) worsened my CFS, the cortef is problably the one to blame. I was on 20 mg for 9 months and I finally weaned off totally recently, I also stopped testosterone and dhea, they aren't the cause of this disease. If cortisol is low and you don't have adisson, there is reason for it, don't play god with your hormones!

 

[MNC]

A million thanks, xchocoholic, gu3vara and all of you.

I can't help being realistic. Chances that something helps or cures this are very small.

Anyway... it's trying something or waiting for the XMRV or similar miracle. And waiting is so desperating.

Thanks again to all.

PS: xchocoholic -> this is from that gluten site of yours related to fibromyalgia and how many people get well going GF -> http://glutendoctors.blogspot.com/2009/06/fibromyalgia-and-its-connection-to.html

 

[SaraM]

I had to go on 20 mg cortef for over a year as I had severe palpitation due to adrenal fatigue after a car accident. I am absolutely sure it caused my muscle pain, food allergy and leaky gut. Before that I had none of these symptoms.Just fatigue and OI.

 

[kolowesi]

Great thread!

I am currently on 10 mg time-release compounded hydrocortisone. I pour about 1/4 of the capsule out, so say 7.5 mg.

I also take 75 mcg compounded T3.

Before correcting subclinical hypothyroid (TSH btn 2.5 and 4), hydrocortisone made me feel terrible. I wonder if anyone can explain the relationship. I have read that if one is low on both, correct the thyroid before adding cortisol. I was on thyroid, first levathyroxin, then Armour, and finally T3 for a couple of years before adding hydrocortisone, and then it worked really well. I was very low by then according to the 24 hour saliva test, morning cortisol at 1.0 with normal > 13.0.

It makes a huge difference in my life, but does magnify the problem of doing too much and paying after it wears off. I am very sensitive to both the T3 and the hydrocortisone. I can't take any more than I am taking without palpitations. I have been told that a low dose of 10 mg or less will not cause adrenal suppression, but that may not be true for us.

An idea to supplement copper: take 5 old pennies, not the new sandwich ones, and put in a small jar of water overnight. Drink the water in the morning. An acupuncturist told me that. It didn't feel right to me, but I'm not low on copper.

Best of luck with the celiac. I hope your gut heals and a lot of things get better. It is so tough to avoid gluten in restaurants and prepared foods. If they put in a dash of soy sauce, that's enough. My friend who has it got more sensitive once she went off.

My mom's endo said I probably have panhypopit. I am low in ACTH, cortisol, DHEA, aldosterone, and all the sex hormones. Thyroid was obviously low as my TSH has fallen to 0.1, which is actually OK though some docs freak out. Anyway, the endo said Lyme can cause pituitary damage. Maybe viruses can mess it up too.

Leaky gut from the celiac disease, from candida, from parasites, from enteroviruses, and whatever else causes all kinds of other problems as everyone knows. I ordered the H2S metabolite test from Belgium and tested very high for hydrogen sulfate. That poisons even the brain.

As you can tell from my writing. So I'll stop now. Best to all!

Kelly

 

[CBS]

Great thread!

I am currently on 10 mg time-release compounded hydrocortisone. I pour about 1/4 of the capsule out, so say 7.5 mg.

I also take 75 mcg compounded T3.

Before correcting subclinical hypothyroid (TSH btn 2.5 and 4), hydrocortisone made me feel terrible. I wonder if anyone can explain the relationship. I have read that if one is low on both, correct the thyroid before adding cortisol. I was on thyroid, first levathyroxin, then Armour, and finally T3 for a couple of years before adding hydrocortisone, and then it worked really well. I was very low by then according to the 24 hour saliva test, morning cortisol at 1.0 with normal > 13.0.

It makes a huge difference in my life, but does magnify the problem of doing too much and paying after it wears off. I am very sensitive to both the T3 and the hydrocortisone. I can't take any more than I am taking without palpitations. I have been told that a low dose of 10 mg or less will not cause adrenal suppression, but that may not be true for us.

Hi Kelly,

You're right about the 10 mg being a relatively low dose (I'm curious about the extended release. Recent studies suggest that taking 10 mg just before bed and then 5 mg at waking more closely mimics the body's natural rhythm - I'll find the reference if anyone wants - doing this with regular HC would probably keep you up all night).

As for correcting thyroid or cortisone first, the rule is to always test for and correct adrenal insufficiency first (with hydrocortisone). Taking thyroid meds before correcting adrenal insufficiency can precipitate an adrenal crisis. This can be life threatening.

This isn't the most scholarly article on the topic (but it was easy to find and it gets the point across): http://thyroid.about.com/b/2004/04/...be-triggered-by-thyroid-hormone-treatment.htm

 

[Athene]

I just want to offer some bits and pieces of info.

My son was diagnosed with celiac disease and prescribed steroids because his villi were so severely shortened that he had a significant number of nutritional deficiencies, so evidently some doctors do use this therapy. In theory it makes them heal faster. Unfortunately he also has CFS and the effect of going on steroids was devastating. He was in hospital for a month and I actually thought he might die.
I was put on a low dose of hydrocortisone as well because my cortisol is so low, but it was also catastrophic for me (I was so weak for a period of time that I would say I was basically paralysed).

I think this copper business is worrying.
The vast majority of people with CFS have high copper deposits in the body, because the body cannot use it properly and dumps it in various parts of the body. You need a provocative urine test with chelators like DMPS or DMSA to test this rather than a blood test. I think it is quite possible that you could have low blood copper but too much in your body since, as I said, the problem is that your body fails to use it properly. I have the symptoms of copper deficiency but I know I have 7 times the amount I should have in my body.
If I were you I would try to get this chelation test before taking more copper.

I had undiagnosed celiac disease for a long time and had a lot of nutritional deficiencies. By the time you get symptomatic copper deficiency with celiac you are grossly deficient in other nutrients that the body runs out of first - B12, you get numb feet: Vitamin C and you get bleeding gums and bruises everywhere: iron deficiency anaemia: zinc deficiency and your hair falls out (I don't mean bald patches but thinning all over and huge clumps in the brush): There are others too that all come before your body runs out of copper.

Also consider that you can have flattened villi and a gluten allergy without being celiac. If you have severe bacterial dysbiosis your villi will remain flattened long after eliminating gluten and the only thing to restore them is lots of the right antibiotics and probiotics to get the correct balance back.

 

[MNC]

I just want to offer some bits and pieces of info.

My son was diagnosed with celiac disease and prescribed steroids because his villi were so severely shortened that he had a significant number of nutritional deficiencies, so evidently some doctors do use this therapy. In theory it makes them heal faster. Unfortunately he also has CFS and the effect of going on steroids was devastating. He was in hospital for a month and I actually thought he might die.
I was put on a low dose of hydrocortisone as well because my cortisol is so low, but it was also catastrophic for me (I was so weak for a period of time that I would say I was basically paralysed).

I think this copper business is worrying.
The vast majority of people with CFS have high copper deposits in the body, because the body cannot use it properly and dumps it in various parts of the body. You need a provocative urine test with chelators like DMPS or DMSA to test this rather than a blood test. I think it is quite possible that you could have low blood copper but too much in your body since, as I said, the problem is that your body fails to use it properly. I have the symptoms of copper deficiency but I know I have 7 times the amount I should have in my body.
If I were you I would try to get this chelation test before taking more copper.

I had undiagnosed celiac disease for a long time and had a lot of nutritional deficiencies. By the time you get symptomatic copper deficiency with celiac you are grossly deficient in other nutrients that the body runs out of first - B12, you get numb feet: Vitamin C and you get bleeding gums and bruises everywhere: iron deficiency anaemia: zinc deficiency and your hair falls out (I don't mean bald patches but thinning all over and huge clumps in the brush): There are others too that all come before your body runs out of copper.

Also consider that you can have flattened villi and a gluten allergy without being celiac. If you have severe bacterial dysbiosis your villi will remain flattened long after eliminating gluten and the only thing to restore them is lots of the right antibiotics and probiotics to get the correct balance back.

Wow... Thank you for this info. What should I do now? I am taking double dose of copper already. 5 mg per day. I took the 24-hour urine test for copper long ago and it turned normal. They were checking if I had Wilson's Disease, as it shows low blood copper too but high in urine.

If I ask my GP (whom I am meeting this evening) for chopper chelation tests, she will say it is not necessary or that she has never heard of that.

Any advice?

Thank you anyway Athene. Everything is sooooo complicated with this illness.

 

[CBS]

If you have severe bacterial dysbiosis your villi will remain flattened long after eliminating gluten and the only thing to restore them is lots of the right antibiotics and probiotics to get the correct balance back.

Hi Athene,

I agree. Autonomic neural dysfunction/damage and a lack of digestive motility can also cause this dysbiosis, leading to Small Intestinal Bacterial Overgrowth (SIBO - too many of the wrong type of bacteria swimming upstream). If that's the case, not much to be done except do what you can to eliminate the portion that is dysfunction (get co-infections under control) and LOTS of the right anti-biotics (eg. Xifaxin is 'non-systemic') accompanied by probiotics. Then take care of yourself (don't overstress your immune system any more than it already is) and keep up the probiotics.

A hydrogen breath test (not widely available) or a fluid sample from an upper GI endoscopy (only in some specialized centers - without experience in doing this test it is too easy to contaminate the endoscope on the way in) can Dx SiBO.

 

[Hope123]

Ok, I didn't go through all the posts here but I have heard that some people with CFS taking low dose hydrocortisone for OTHER REASONS THAN CFS UNDER THE SUPERVISION OF A DOCTOR have felt that their energy levels on it were better. Note that hydrocortisone will make almost anyone feel like they have more energy, even a healthy person.

HOWEVER, there were some clinical trials of low dose hydrocortisone in CFS in the 1990s and despite people only being on low doses for a short time, there was already evidence of osteoporeosis and other side effects. The benefits were mixed if I remember right.

A possible reason why hydrocortisone might help people feel better is because it suppresses the immune system, perhaps lowering the higher levels of cytokines some CFS sufferers have. But, as was pointed out, it might be a short-term solution with poor long-term consequences, either in the form of steroid side effects or promoting XMRV. Also note that most rheumatologic/ immune therapies were developed originally as "steroid sparing" treatments, meaning docs knew steroids worked well for many illnesses but saw too many side effects.

All this is to say, proceed with caution and please don't take without supervision.

 

[Athene]

HI MNC,
I think you're right that your GP will be unhelpful with a chelation test. I had mine done privately by Kenny De Meirleir and sent to a lab in Germany. You find out your levels of all kinds of minerals, some nutrients and also the toxic heavy metals so if you can afford it, I think it is well worth having it done privately.
I had high levels of various minerals in my vit supplements, which I immediately threw away.

 

[fisgn]

Hi MNC

I am about to start Hydrocortisone soon so I will let u know how I get on. Just one thing, you mentioned you are taking cortisone, which is actually not the same thing as hydrocortisone. HC is actually synthetic cortisol, which is a hormone your adrenals produce, cortisone and cortisol, as far as I know, are not the same thing at all. The name is deceptive.

 

[August59]

I have been taking low dose cortisone for a couple of years. It has worked very well for me, but I take 10 mg. in the morning and 5 mg. around 2-3 in the afternoon. I will in certain situations (stressful one's) take an additional 5 mg. The body typically makes 20 - 30mg a day in a normal unstressed environment, with a little more if it is stressful. So, if you are running a little low then 10 - 15 mg a day is not going to change your bodies reaction because it is "geared" to run on close to that amount. Another thing that is not very well conveyed to chronic pain patients is that "opiate" medications when given chronically slightly decreases base cortisol levels, but what it affects terribly is the bodies ability to respond to stress with increased cortisol. The opiates (taken chronically) shutdown the bodies cortisol response to stress. I emphasize chronically because the opiate medications effect on the HPA axis changes after about 6 - 8 weeks on them. The most common indication of this is with men who are on "chronic pain management" almost always have low testosterone after about 9 months to a 1 year. The cortisol situation is just now coming to light, but it is not as critical to most patients as "low testosterone" would be. It pretty much depends on the persons situation and lifestyle.

 

[Athene]

Dear August,
Do you know how long the reduction in cortisol production lasts after opiate medications are stopped?

The reason I am asking is that incompletely digested molecules of both gluten and casein, such as enter the bloodstream of people with leaky gut, have a molecular structure so similar to morphine that they work on the brain in the same way.... so I wonder if they could work on cortisol production in the same way too?
Sorry if this is a ludicrous question, I don't know anything about chemistry...

 

[sunlady]

Hi All,

I have suffered for more than 35 years with ME (Canadian Consensus). This did not happen in an outbreak, but individually whilst at Uni.

I was tested for EBV twice and found to be negative. I developed brain fog and other cognitive problems within weeks and 8 months later had a terrible attack of shingles.

I struggled on with this unknown illness for 3 more years and then, with no warning, woke up with Posterior Scleritis. This is a very rare, inflammatory eye disease, was in both my eyes and took 3 years to control.

It is normally linked to Rheumatoid Arthritis or Auto immune Disease, and laterly AIDS.

I had/have none of the markers for these diseases.

I was prescribed 120mg Prednisolone daily to save my sight. The sight in one eye was already damaged because of incorrect diagnosis.

When trying to reduce Prednisolone my eyes would flare up again and the only way I could get off the steroids was by ACTH injections.

30 years later I have osteoporosis in both knees but according to a DEXA scan, I have the bone density of a 20 year old!!

After 32 years my eye disease is back, and once again I have no markers for the usual suspect causes.

I am on Hydrocortisone again, having had to raise my dose from 2.5mg per day in September to 50 mg per day and increasing. I still cannot get the inflammation under control.This has all been done with specialists at Moorfield Eye Hospital, London.

I wanted to use Hydrocortisone, which I have used before and had managed to wean myself off, rather than Prednisolone which caused me terrible problems with withrawl.

When using Hydrocortisone you need to be aware that it has a shorter shelf life, about 4 hours, and needs to be taken in the morning and usually again at lunch time. I would not take it later than 4 in the afternoon if you want to sleep.

The replacement dose is between 15-20mg per day. 20mg is equivalent to 5mg Prenisolone.

When dealing with under active thyroid/adrenal issues, the adrenal (hydrocortisone) needs to be implemented first.

Hydrocortisone also calms the inflammation in my gut, this is in combination with a gluten free diet.

Hope this helps

 

[Wayne]

After 32 years my eye disease is back, and once again I have no markers for the usual suspect causes.

Hi Sunlady,

I was wondering if you've ever researched herbal eye washes. Dr. John Christopher, an old time herbalist (now deceased), developed an eye wash formula that was able to successfully treat a wide variety of eye ailments, including some cases of blindness. This LINK will take you to a site that has a large number of eyewash testimonials.

I've heard that a number of eye ailments actually result from microscopic parasitic infections. Supposedly eyewash formulas have the ability to clear some of these out. I hope you can find something that works well for you.

All the Best, Wayne

 

[energyoverload]

yea, iv'e tried that. my cortisol was really low. Went on therapy - helped a little bit, but then stopped helping :S