T Nation

Supplementing Cortisone Therapy

One of my friend is afflicted with an extremely rare syndrome, Cogan’s Syndrome. Really fucked up. Look at that if you want :

She is on cortisone therapy. I already told her to take calcium supplementation to help reduce bone weakening and drink more water to help evacuate more water (because cortisone therapy causes water retention, right?)

I want to know, while on cortisone therapy, does water retention works the same? If she drinks more water, will seh store more water or will it help, as it should be if she was not on cortisone?

Also, is there something else she could do to help her? To help reduce the symptomes of that therapy?

Very very rare disease. Essentially this is an inflammatory disease primarily affecting the eyes and ears, although often has systemic effects as well similar to lupus or systemic vasculitis. As far as I understand, high dose oral corticosteroids are the mainstay of treatment (usually 1-2mg/kg), with the goal of tapering off in a few weeks to months.

For longer courses of corticosteroids, sparing agents such as methotrexate and azathioprine can probably be used as well to reduce the necessary doses, although I would assume that experience might be limited. I would wonder about using biological agents such as rituximab and/or TNF-alpha inhibitors, but again, this is far beyond my knowledge.

Your friend probably has found an expert to manage treatment, or if not, should find someone, even if it means traveling some distance.

To specifically answer your question, yes, your friend should be taking calcium plus vitamin D supplements, probably 1000-1500mg of calcium carbonate along with 400-800U of vitamin D daily, for at least as long as she is taking steroids.

Steroid will cause some fluid retention, along with other side effects. Unfortunately, little can be done about these side effects. The benefit of taking corticosteroids in this case almost certainly outweighs these side effects (with a high risk of blindness or deafness from Cogan’s syndrome).

Hope this helps.

[quote]paulMD wrote:
Very very rare disease. Essentially this is an inflammatory disease primarily affecting the eyes and ears, although often has systemic effects as well similar to lupus or systemic vasculitis. As far as I understand, high dose oral corticosteroids are the mainstay of treatment (usually 1-2mg/kg), with the goal of tapering off in a few weeks to months.

For longer courses of corticosteroids, sparing agents such as methotrexate and azathioprine can probably be used as well to reduce the necessary doses, although I would assume that experience might be limited. I would wonder about using biological agents such as rituximab and/or TNF-alpha inhibitors, but again, this is far beyond my knowledge.

Your friend probably has found an expert to manage treatment, or if not, should find someone, even if it means traveling some distance.

To specifically answer your question, yes, your friend should be taking calcium plus vitamin D supplements, probably 1000-1500mg of calcium carbonate along with 400-800U of vitamin D daily, for at least as long as she is taking steroids.

Steroid will cause some fluid retention, along with other side effects. Unfortunately, little can be done about these side effects. The benefit of taking corticosteroids in this case almost certainly outweighs these side effects (with a high risk of blindness or deafness from Cogan’s syndrome).

Hope this helps.[/quote]

Thanks a lot. Yes, she is seeing a shitload of experts for this. She already has trouble with her hearing too, and with her balance. I’ve read some things about the subject, and I saw that calcium supplementation is very important.

However, her ‘‘specialists’’ did not even tell her about that… We live in quebec, one of the worst place to get hospitalized (even if it is free… How about 12 hours of waiting before seeing a doctor?)

Can you tell me why Vitamin D?

[quote]paulMD wrote:
Very very rare disease. Essentially this is an inflammatory disease primarily affecting the eyes and ears, although often has systemic effects as well similar to lupus or systemic vasculitis. As far as I understand, high dose oral corticosteroids are the mainstay of treatment (usually 1-2mg/kg), with the goal of tapering off in a few weeks to months.

For longer courses of corticosteroids, sparing agents such as methotrexate and azathioprine can probably be used as well to reduce the necessary doses, although I would assume that experience might be limited. I would wonder about using biological agents such as rituximab and/or TNF-alpha inhibitors, but again, this is far beyond my knowledge.

Your friend probably has found an expert to manage treatment, or if not, should find someone, even if it means traveling some distance.

To specifically answer your question, yes, your friend should be taking calcium plus vitamin D supplements, probably 1000-1500mg of calcium carbonate along with 400-800U of vitamin D daily, for at least as long as she is taking steroids.

Steroid will cause some fluid retention, along with other side effects. Unfortunately, little can be done about these side effects. The benefit of taking corticosteroids in this case almost certainly outweighs these side effects (with a high risk of blindness or deafness from Cogan’s syndrome).

Hope this helps.[/quote]

I googled a bit. So vitamin D would be to facilitate calcium absorption right?

ANd PaulMD, Are you a doctor or something? Just wanna know, you are a great help.

You are right, vitamin D to help with absorption of calcium. I am a doctor.

[quote]paulMD wrote:
You are right, vitamin D to help with absorption of calcium. I am a doctor.[/quote]

Ok. Thanks a lot.

Is there anything that can be done about water retention whilt on cortisone therapy? She is really freaking out about that… Any help would be great

I’d like to correct that in Quebec it takes a long time to see in the ER if your issue is categorized as not urgent, if it is urgent you’ll be seen right away.

Secondly, Quebec is a very good place to be hospitalized as ‘‘in being in a hospital room’’ where quality of care is generally very well graded.

However, since the vast majority of people only see the bottleneck ER aspect they find the health care to be below standards.

AlexH

[quote]gogotheviking wrote:
paulMD wrote:
You are right, vitamin D to help with absorption of calcium. I am a doctor.

Ok. Thanks a lot.

Is there anything that can be done about water retention whilt on cortisone therapy? She is really freaking out about that… Any help would be great[/quote]

I’m on 10 mg of pregnisolone per day for asthma. For water retention, I just make sure I get enough sodium (not salt) and water per day. A lack of either will cause water retention.

[quote]Dandalex wrote:
I’d like to correct that in Quebec it takes a long time to see in the ER if your issue is categorized as not urgent, if it is urgent you’ll be seen right away.

Secondly, Quebec is a very good place to be hospitalized as ‘‘in being in a hospital room’’ where quality of care is generally very well graded.

However, since the vast majority of people only see the bottleneck ER aspect they find the health care to be below standards.

AlexH[/quote]

I was a paramedic before, and let me tell you that Quebec is not the best place to be hospitalized. I’m not bitching for the sake of bithcing, I’ve been involved in it.

Hell, someone I know was having real bad stomach pain, could not eat for a week, etc… She sees a doctor, the only thing he did was take an appointment for some tests in NOVEMBER (she saw the doctor last month…) No prescription, no nothing…

And that is just one small thing, compared to some other things I saw.

What type of salt would you be using? Since sodium generally presents itsel as a salt of something. Last time I checked, sodium had to be oxydized with something as I imagine you don’t have metallic sodium lying around the house.

Moreover, I am trying to figure out what difference it would make considering physiologically sodium is largely always free in physiologic liquids and is a water retaining agent through with the kidneys act to ensure proper water and sodium balance.

One of the reasons glucocorticosteroids can induce ‘‘water retention’’ is that they activate to a small extant the same receptors that mineralocorticosteroids do therefore increasing sodium and water retention and increasing potassium loss. This will occure if the corticosteroid effect ‘‘overpower’’ the mineralocorticosteroid escape phenomenon (drop in mineralocorticosteroid to prevent excess retention). Low doses of cortisone tend to have minimal to no effect of fluid retention as a number of negative feedback mechanism are activated to counterbalance the increase in cortisone.

Anyway, generally speaking, salt and sodium containing products consumption should be limited as water retention is increased mildly with a high sodium diet.

AlexH

[quote]gogotheviking wrote:

I was a paramedic before, and let me tell you that Quebec is not the best place to be hospitalized. I’m not bitching for the sake of bithcing, I’ve been involved in it.

Hell, someone I know was having real bad stomach pain, could not eat for a week, etc… She sees a doctor, the only thing he did was take an appointment for some tests in NOVEMBER (she saw the doctor last month…) No prescription, no nothing…

And that is just one small thing, compared to some other things I saw.

[/quote]

I must say that I too am in the health care system and have studied it comparatively to a number of other western nations and we tend to present not infavorably.

However, one must differentiate being hospitalized (?tre hospitalis? sur l’?tage) vs ambulatory medicine which is much less nicer simply because of a multifactorial shortage of doctors.

Being a health care professional myself, I would have no problems being hospitalized in either a community hospital or a tertiary teaching hospital.

On thing is for sure, if you end up being hospitalized for anything outside of geriatrics in a tertiary center, you’ll be investigated like you would not believe.

As for your friend, I hope she’s doing better but abdominal pain with anorexia is a relatively common issue and with other signs and symptoms it probably did not register as a medical emergency to the doc she saw.

I find people are easy to judge a doctor’s incompetence or a system failure and when you actually listen to the story you realize that what was done was actually the right thing but that’s oblivious to anyone but someone truly in the know.

Anyway, I’ll stop highjacking this thread now.

AlexH

[quote]gogotheviking wrote:
I was a paramedic before, and let me tell you that Quebec is not the best place to be hospitalized. I’m not bitching for the sake of bithcing, I’ve been involved in it.
[/quote]

Yeah, maybe Haiti or Liberia is a better place to be hospitalized?
Give me a break! Enough with those spoiled little bitches!

[quote]Franck wrote:
gogotheviking wrote:
I was a paramedic before, and let me tell you that Quebec is not the best place to be hospitalized. I’m not bitching for the sake of bithcing, I’ve been involved in it.

Yeah, maybe Haiti or Liberia is a better place to be hospitalized?
Give me a break! Enough with those spoiled little bitches!

[/quote]

Since when did I talk about poor countries hospital system, tough boy? I was talking about modern society hospitalization, not versus third world countries or shit like that!

There is always somewhere or something worst, so that argument is pretty weak…

When you will have experienced something like someone nearly drowning in his vomit, because he was in a cervical collar, unconscious, and there was a shortage of staff and too much patients, you’ll come back and we can have a real discussion about poor healthcare.

[quote]Dandalex wrote:
What type of salt would you be using? Since sodium generally presents itsel as a salt of something. Last time I checked, sodium had to be oxydized with something as I imagine you don’t have metallic sodium lying around the house.

Moreover, I am trying to figure out what difference it would make considering physiologically sodium is largely always free in physiologic liquids and is a water retaining agent through with the kidneys act to ensure proper water and sodium balance.

One of the reasons glucocorticosteroids can induce ‘‘water retention’’ is that they activate to a small extant the same receptors that mineralocorticosteroids do therefore increasing sodium and water retention and increasing potassium loss. This will occure if the corticosteroid effect ‘‘overpower’’ the mineralocorticosteroid escape phenomenon (drop in mineralocorticosteroid to prevent excess retention). Low doses of cortisone tend to have minimal to no effect of fluid retention as a number of negative feedback mechanism are activated to counterbalance the increase in cortisone.

Anyway, generally speaking, salt and sodium containing products consumption should be limited as water retention is increased mildly with a high sodium diet.

AlexH[/quote]

Sea Salt is pure Na. It does not need to consumed as a salt.

And you have it backwards, a lack of Na in the diet causes an increase in water retention. You even said it yourself, “that they activate to a small extant the same receptors that mineralocorticosteroids do therefore increasing sodium and water”

Yes Na is present in the body as is water, but we still drink water don’t we.

Does she have hypertension? High blood pressure? Not all hypertension is treated with removing Na from the patient’s diet.

Try it yourself if you want, remove all Na from your diet, and you’ll turn into a water filled balloon.

http://scottabel.blogspot.com/2007/05/this-month-i-have-decided-to-republish.html

I also have something from John Berardi and Na consumption pre-contest, and peri-contest where he agrees it is pointless to stop the ingestion of salt.

[quote]coloradosteve wrote:
Dandalex wrote:
What type of salt would you be using? Since sodium generally presents itsel as a salt of something. Last time I checked, sodium had to be oxydized with something as I imagine you don’t have metallic sodium lying around the house.

Moreover, I am trying to figure out what difference it would make considering physiologically sodium is largely always free in physiologic liquids and is a water retaining agent through with the kidneys act to ensure proper water and sodium balance.

One of the reasons glucocorticosteroids can induce ‘‘water retention’’ is that they activate to a small extant the same receptors that mineralocorticosteroids do therefore increasing sodium and water retention and increasing potassium loss. This will occure if the corticosteroid effect ‘‘overpower’’ the mineralocorticosteroid escape phenomenon (drop in mineralocorticosteroid to prevent excess retention). Low doses of cortisone tend to have minimal to no effect of fluid retention as a number of negative feedback mechanism are activated to counterbalance the increase in cortisone.

Anyway, generally speaking, salt and sodium containing products consumption should be limited as water retention is increased mildly with a high sodium diet.

AlexH

Sea Salt is pure Na. It does not need to consumed as a salt.

And you have it backwards, a lack of Na in the diet causes an increase in water retention. You even said it yourself, “that they activate to a small extant the same receptors that mineralocorticosteroids do therefore increasing sodium and water”

Yes Na is present in the body as is water, but we still drink water don’t we.

Does she have hypertension? High blood pressure? Not all hypertension is treated with removing Na from the patient’s diet.

Try it yourself if you want, remove all Na from your diet, and you’ll turn into a water filled balloon.

http://scottabel.blogspot.com/2007/05/this-month-i-have-decided-to-republish.html

I also have something from John Berardi and Na consumption pre-contest, and peri-contest where he agrees it is pointless to stop the ingestion of salt. [/quote]

Ok guys so are you suggesting that she still consumes sodium, only less?

So, if she does not add salt to her meals, would that be enough? Or does she have to watch food containing high sodium as well?

I don’t think there is much you can do to counteract the fluid retention with corticosteroids. Limiting sodium intake would be one idea, but some of the chronic changes associated with the drug (redistribution of fat stores – “moon facies” and “buffalo hump”) only seem to reverse when the drugs are stopped.

Again, with most rheumatic diseases, the goal is to taper off steroids within maybe 6 months, while switching to a steroid-sparing agent such as methotrexate, azathioprine, amongst other options.

[quote]paulMD wrote:
I don’t think there is much you can do to counteract the fluid retention with corticosteroids. Limiting sodium intake would be one idea, but some of the chronic changes associated with the drug (redistribution of fat stores – “moon facies” and “buffalo hump”) only seem to reverse when the drugs are stopped.

Again, with most rheumatic diseases, the goal is to taper off steroids within maybe 6 months, while switching to a steroid-sparing agent such as methotrexate, azathioprine, amongst other options.[/quote]

Ok thanks a lot I’ll tell her that. You’ve been a great help guys, many thanks to all of you.

[quote]coloradosteve wrote:
Sea Salt is pure Na. It does not need to consumed as a salt.

And you have it backwards, a lack of Na in the diet causes an increase in water retention. You even said it yourself, “that they activate to a small extant the same receptors that mineralocorticosteroids do therefore increasing sodium and water”

Yes Na is present in the body as is water, but we still drink water don’t we.

Does she have hypertension? High blood pressure? Not all hypertension is treated with removing Na from the patient’s diet.

Try it yourself if you want, remove all Na from your diet, and you’ll turn into a water filled balloon.

http://scottabel.blogspot.com/2007/05/this-month-i-have-decided-to-republish.html

I also have something from John Berardi and Na consumption pre-contest, and peri-contest where he agrees it is pointless to stop the ingestion of salt. [/quote]

Sea salt is NaCl. Pure sodium is a metalic compound that cannot be left in room air without being oxidized and must be kept in a lipidic liquid, and a light protected container and cannot be consumed unless you want 3rd degree burns. If you’ve never seen Na or Li react with water, you’ve missed something.

An no, I do not have it backwards, removing Na from diet will induce a compensatory mechanism where the kidney will try to retake all the Na and water loss, which does not mean it succeeds.

Also, the first line of largely all hypertension treatement is weight loss, exercice and sodium restriction.

Anyway, the point here is she needs to limit her sodium intake.

But like it has been said the worst side effects of corticosteroid therpay resolve when the medication is stopped after the tapper.

AlexH.