Chris.Brown@f113.n163.z1.fidonet.org (Chris Brown) (03/16/91)
Index Number: 14026
Members of the Allergy and Environmental Health Association often have
stories similar to that of your friend. A worsening autoimmune problem
is dealt with by applying medication which, apparently due to the persons
immune or other sensitivity, is producing side effects that call into
question the price being paid for treatment.
We try to explore what might be triggering the reaction, and try to avoid
that (or those) substances, following an extensive interview, sometimes a
food diary, removal reintroduction testing, and various other tests of
varying reliability.
Some doctors concerned about these problems have made exaggerated claims
concerning the comprehensiveness of their comprehension, which caused a
backlash in other, obviously just as brilliant medical men and women.
If doctors had been less concerned about the proper intellectualization and the
ir egos....etc etc etc
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!163!113!Chris.Brown
Internet: Chris.Brown@f113.n163.z1.fidonet.orgGary.Bewell@f424.n104.z1.fidonet.org (Gary Bewell) (03/16/91)
Index Number: 14032
On 17 Feb 91, you wrote to All
PF> I have a friend in the hospital right now being treated for
PF> Lupus. They are giving her 500mg of Prednisone per day for
PF> three days to try and control it. Her lungs are presently
PF> functioning at 65% capacity.
PF> She is afraid of loosing her hair and gaining weight.
Hi Patricia,
Personally I would use prednisone if I was having breathing
problems caused by inflammation.
I used it twice for retrobulbar optic neuritis (the blindness that
I mentioned in the previous message). I can't remember how much I
took it was quite a lot. I gradually increased the dosage,
maintained the optimum amount, then gradually decreased the
amount. This was done over a month. I then went for a second
round for another month. If I'd known the side-effects, I wouldn't
have convinced my eye specialist to give me another prescription
but I was young and naive. My Commanding Officer was a doctor.
When he heard I was on prednisone, he lectured me for 20 minutes
about the side-effects and the importance of gradually coming off
the drug. I think it boiled down to stopping while on high dosages
is lethal. He also told me to ask questions before using a drug
and to look up drugs in the CPS (Compendium of Pharmaceuticals and
Specialities). The CPS may be only a Canadian book.
Prednisone is recommended in high doses for short-term treatment of
inflammations. Long term use is not recommended due to the
side-effects.
I did retain water while on it. My face did get puffy
(moon-faced). My sister has also used it (MS too). Her first use
was just before she got married. She was terrified that she
wouldn't be able to get into her wedding dress due to the water
retention. She has developed osteoporosis which she feels is
attributed to using prednisone too often.
The best thing would be to have ask her doctor or one of the
nurses. They should have a pharmacetical book.
Gary
# Origin: Total Perspective Vortex,Calgary,AB (MetroNet 201:5500/198)
To respond netmail, use FSC-0038 DOMAIN lines or as 1st line of msg use:
@DOMAIN METRONET 201:5500/198 <your address: domain z:n/n>
=== FNPGate 2.50 Release
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!104!424!Gary.Bewell
Internet: Gary.Bewell@f424.n104.z1.fidonet.orgNadine.Thomas@p1.f7.n300.z1.fidonet.org (Nadine Thomas) (03/16/91)
Index Number: 14041
This is a very difficult post for me.
First, if your friend is only having the steroids for 3 days then she has a
good chance of escaping most of the side affects.
On the other hand she could be thrown into a lupus flare of MAJOR proportions.
It is a treatment that has no significant results one way or the other.
I know that I had a 1000 mg. bolus (I.V.) of solmedrol (steroids) Dec. of 1989
and within 2 days I was into one of the worse flares I have ever experienced.
My two surgeries this past Nov 1990 I was given 100 mg. and 200 mgs. and I
was thrown into an even worse flare then the previous one and I have ended up
having to use a 3 wheeled cart and no prognosis for my future.
Second, Rusty is going on the prednisone for 6 months and then Imuran if I read
his post correctly.
I know that we had corresponded quite a bit about prednisone when Rusty first
came on the echo.
It is nice to say to hell with the side-affects but I want to tell you a couple
of stories.
There was a wonderful man by the name of Tim Watts who used to be on this echo.
He had lupus and had gone the route of steroids. He developed diabetes, kidney
failure, eyesight problems etc. He ended up on I.V.'s continuously (24 hours
a day), and his diabetes had him to a point where they were cutting him up and
removing parts of him a little at a time. He went from a walking productive
human being to a person in a wheelchair who's legs no longer had the circulation
necessary to keep him going. He was facing losing BOTH his legs last year.
Mercifully he died before they cut him up any more.
All that from taking steroids.
I took steroids for about 7 or 8 years before I started seeing problems - I
had gotten diabetes after only 3 years on it. I had massive severe infections
that were killing me. The infections were in my bloodstream too.
I was dying. The steroids had compromised my immune system so much that it
was not protecting me from rare organisms. I had put on 100 pounds. My mood
swings were horrible - I would be on crying jags and feel suicidal and not understand
what was going on. ANY medication that can suppress my immune system has the
potential to KILL me.
When you say that drugs affect people differently you are correct to a point.
Steroids - once started - are one of the MOST DIFFICULT to get off of - it is
worse then a drug addiction.
My stories are not, unfortunately, isolated incidents but rather the rule then
the exception.
My neighbor has MS and she knows of many, with MS, who tried the high doses
of steroids and they were ALL thrown into severe flares.
Am I trying to scare you? Yes. I want you and Rusty to know the severity and
the consequences of steroids - especially if used on a long term basis. Trading
off for another immune suppresant is not always the answer either - immune suppressants
are just that - they stop the body from defending itself from bad bacteria and
organisms. If I am not mistaken one of the side affects of Imuran is cancer.
Believe me if I thought there was ANY kind of hope by taking steroids Iwould
be taking it RIGHT NOW - I guess I'd rather be in pain then dead right now (although
that is not my thinking a lot of the time). I don't know what I want at this
point but I do know that if I do the steroids again then I am closing my option
door forever.
Rusty mentioned that he is devouring ice cream and his sugar level is going
wacky. DANGER! You had both better take this seriously. He needs to see a
nutritionist NOW - he needs to know what free foods are so he can keep his sugar
and weight under control NOW.
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!300!7.1!Nadine.Thomas
Internet: Nadine.Thomas@p1.f7.n300.z1.fidonet.orgPatricia.Ferguson@f13.n123.z1.fidonet.org (Patricia Ferguson) (03/20/91)
Index Number: 14078
CB> worsening autoimmune problem is dealt with by applying
CB> medication which, apparently due to the persons immune or
CB> other sensitivity, is producing side effects that call into
CB> question the price being paid for treatment.
In my friends case they told her to not worry too much about the side
affects right now. Just concentrate on the effectiveness on her problem.
But she really doesnt know a lot about what they are doing to her. She is a
smart lady but either doesnt know what to ask or is afraid to ask about
details in her treatment. Maybe I ask too much about my families and my own
medical treatments. Maybe I'm just one of those "hard to deal with"
patients, too inquisitive. But I would like to see Doctors disclose a
little bit more at times. I know, I know....sometimes the patient isnt
quite ready for it. It just seems like if more was shared then sometimes
other problems might be avoided such as drug interactions, side affects,
etc... I strongly believe in patient education.
CB> exaggerated claims concerning the comprehensiveness of their
CB> comprehension, which caused a backlash in other, obviously
I like that..."comprehensiveness of their comprehension"....sounds like
something I need to hang on to for my reports at work! (grin) I wonder how
far I can get with that!
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!123!13!Patricia.Ferguson
Internet: Patricia.Ferguson@f13.n123.z1.fidonet.orgChris.Brown@f113.n163.z1.fidonet.org (Chris Brown) (03/21/91)
Index Number: 14103
BTW, we have many members who have developed long-term disabilities
because their doctors have told them to ignore side effects of drugs
which have had, for them, immunotoxic effects. I think your friend
should become aware of this, and include it in her decisions as to what
he or she will do. Let me know if you need info, or medical references.
One immediate one is the Laboratory Centre for Disease Control, Health
and Welfare canada, Dr. John Davies, (613) 957 0318. He's about to
release a report from a workshop on this subject that identifies some of
the problems persons with drug or other sensitivities due to bigotry in
the medical profession.
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!163!113!Chris.Brown
Internet: Chris.Brown@f113.n163.z1.fidonet.orgJulie.More@p2.f223.n163.z1.fidonet.org (Julie More) (03/21/91)
Index Number: 14104 In a message of <21 Feb 91 22:01:03>, Patricia Ferguson (1:123/13) writes: >She >is a smart lady but either doesnt know what to ask or is afraid to ask >about details in her treatment. Actually that happens quite often that people are afraid of asking questions from their doctors. In some cases it may be because people are afraid to find out all the bad news. In my case when my son was born and I suspected something was wrong with him, I kept forgetting to ask all the questions from the doctor during my visits. After few visits I learned to keep a list of questions. I started the list the day after my last appointment with the doctor and kept it up until it was time to see her again. Doctors also tend to minimize the problems. I wish I would have a penny every time my doctor told me that I am overreacting about Robbie, there is nothing wrong with him, only to find out later that I was right in the first place. >Maybe I ask too much about my families >and my own medical treatments. Maybe I'm just one of those "hard to deal >with" patients, too inquisitive. But I would like to see Doctors >disclose a little bit more at times. I know, I know....sometimes the >patient isnt quite ready for it. It just seems like if more was shared >then sometimes other problems might be avoided such as drug interactions, >side affects, etc... I strongly believe in patient education. Hear! Hear! Hear! Keep up the good work. This way you are also educating the medical profession about how to deal with their patients. Just think of it this way, because of the questions you ask, you make it easier for the next patient. Hopefully with the next patient the doctor will automatically give her the details so she won't have to ask for it. At least that's the way I think about it when I ask 50 million questions from Rob's doctor and he looks very impatient with me. <smile> -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!163!223.2!Julie.More Internet: Julie.More@p2.f223.n163.z1.fidonet.org
Chris.Brown@f113.n163.z1.fidonet.org (Chris Brown) (04/04/91)
Index Number: 14606
Members of the Allergy and Environmental Health Association often have
stories similar to that of your friend. A worsening autoimmune problem
is dealt with by applying medication which, apparently due to the persons
immune or other sensitivity, is producing side effects that call into
question the price being paid for treatment.
We try to explore what might be triggering the reaction, and try to avoid
that (or those) substances, following an extensive interview, sometimes a
food diary, removal reintroduction testing, and various other tests of
varying reliability.
Some doctors concerned about these problems have made exaggerated claims
concerning the comprehensiveness of their comprehension, which caused a
backlash in other, obviously just as brilliant medical men and women.
If doctors had been less concerned about the proper intellectualization and the
ir egos....etc etc etc
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!163!113!Chris.Brown
Internet: Chris.Brown@f113.n163.z1.fidonet.orgGary.Bewell@f424.n104.z1.fidonet.org (Gary Bewell) (04/04/91)
Index Number: 14611
On 17 Feb 91, you wrote to All
PF> I have a friend in the hospital right now being treated for
PF> Lupus. They are giving her 500mg of Prednisone per day for
PF> three days to try and control it. Her lungs are presently
PF> functioning at 65% capacity.
PF> She is afraid of loosing her hair and gaining weight.
Hi Patricia,
Personally I would use prednisone if I was having breathing
problems caused by inflammation.
I used it twice for retrobulbar optic neuritis (the blindness that
I mentioned in the previous message). I can't remember how much I
took it was quite a lot. I gradually increased the dosage,
maintained the optimum amount, then gradually decreased the
amount. This was done over a month. I then went for a second
round for another month. If I'd known the side-effects, I wouldn't
have convinced my eye specialist to give me another prescription
but I was young and naive. My Commanding Officer was a doctor.
When he heard I was on prednisone, he lectured me for 20 minutes
about the side-effects and the importance of gradually coming off
the drug. I think it boiled down to stopping while on high dosages
is lethal. He also told me to ask questions before using a drug
and to look up drugs in the CPS (Compendium of Pharmaceuticals and
Specialities). The CPS may be only a Canadian book.
Prednisone is recommended in high doses for short-term treatment of
inflammations. Long term use is not recommended due to the
side-effects.
I did retain water while on it. My face did get puffy
(moon-faced). My sister has also used it (MS too). Her first use
was just before she got married. She was terrified that she
wouldn't be able to get into her wedding dress due to the water
retention. She has developed osteoporosis which she feels is
attributed to using prednisone too often.
The best thing would be to have ask her doctor or one of the
nurses. They should have a pharmacetical book.
Gary
# Origin: Total Perspective Vortex,Calgary,AB (MetroNet 201:5500/198)
To respond netmail, use FSC-0038 DOMAIN lines or as 1st line of msg use:
@DOMAIN METRONET 201:5500/198 <your address: domain z:n/n>
=== FNPGate 2.50 Release
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!104!424!Gary.Bewell
Internet: Gary.Bewell@f424.n104.z1.fidonet.orgNadine.Thomas@p1.f7.n300.z1.fidonet.org (Nadine Thomas) (04/04/91)
Index Number: 14613
This is a very difficult post for me.
First, if your friend is only having the steroids for 3 days then she has a
good chance of escaping most of the side affects.
On the other hand she could be thrown into a lupus flare of MAJOR proportions.
It is a treatment that has no significant results one way or the other.
I know that I had a 1000 mg. bolus (I.V.) of solmedrol (steroids) Dec. of 1989
and within 2 days I was into one of the worse flares I have ever experienced.
My two surgeries this past Nov 1990 I was given 100 mg. and 200 mgs. and I
was thrown into an even worse flare then the previous one and I have ended up
having to use a 3 wheeled cart and no prognosis for my future.
Second, Rusty is going on the prednisone for 6 months and then Imuran if I read
his post correctly.
I know that we had corresponded quite a bit about prednisone when Rusty first
came on the echo.
It is nice to say to hell with the side-affects but I want to tell you a couple
of stories.
There was a wonderful man by the name of Tim Watts who used to be on this echo.
He had lupus and had gone the route of steroids. He developed diabetes, kidney
failure, eyesight problems etc. He ended up on I.V.'s continuously (24 hours
a day), and his diabetes had him to a point where they were cutting him up and
removing parts of him a little at a time. He went from a walking productive
human being to a person in a wheelchair who's legs no longer had the circulation
necessary to keep him going. He was facing losing BOTH his legs last year.
Mercifully he died before they cut him up any more.
All that from taking steroids.
I took steroids for about 7 or 8 years before I started seeing problems - I
had gotten diabetes after only 3 years on it. I had massive severe infections
that were killing me. The infections were in my bloodstream too.
I was dying. The steroids had compromised my immune system so much that it
was not protecting me from rare organisms. I had put on 100 pounds. My mood
swings were horrible - I would be on crying jags and feel suicidal and not understand
what was going on. ANY medication that can suppress my immune system has the
potential to KILL me.
When you say that drugs affect people differently you are correct to a point.
Steroids - once started - are one of the MOST DIFFICULT to get off of - it is
worse then a drug addiction.
My stories are not, unfortunately, isolated incidents but rather the rule then
the exception.
My neighbor has MS and she knows of many, with MS, who tried the high doses
of steroids and they were ALL thrown into severe flares.
Am I trying to scare you? Yes. I want you and Rusty to know the severity and
the consequences of steroids - especially if used on a long term basis. Trading
off for another immune suppresant is not always the answer either - immune suppressants
are just that - they stop the body from defending itself from bad bacteria and
organisms. If I am not mistaken one of the side affects of Imuran is cancer.
Believe me if I thought there was ANY kind of hope by taking steroids Iwould
be taking it RIGHT NOW - I guess I'd rather be in pain then dead right now (although
that is not my thinking a lot of the time). I don't know what I want at this
point but I do know that if I do the steroids again then I am closing my option
door forever.
Rusty mentioned that he is devouring ice cream and his sugar level is going
wacky. DANGER! You had both better take this seriously. He needs to see a
nutritionist NOW - he needs to know what free foods are so he can keep his sugar
and weight under control NOW.
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!300!7.1!Nadine.Thomas
Internet: Nadine.Thomas@p1.f7.n300.z1.fidonet.org