Re: Re: Another newbie with questions

[Guest guest]

You can tell your friends that you have allergies and certain foods make you

ill. hat might help in that area.

Re: another newbie with questions

>

> > Hello, folks. My name is and I'm about to take the Type O

> > plunge. I must admit, this is a bit intimidating to me and I'm

> > hoping you'll all have words of widsom and encouragment as well as

> > perhaps a few answers!

> >

> > How did you get started? Drastic and cold turkey or phase out

> dairy

> > and slowly eliminate avoids from there?

>

>

> I actually bought the original book for a friend of mine who keeps

> ending up in the hospital with digestive issues. It had come

> recommended by someone I know online who had had similar problems.

> My friend, however, refused to even consider it because she's Type A,

> and the vegetarian lifestyle was horrifying to her. (Why it was more

> horrifying than extremely painful stomach problems and 4-5 hospital

> visits a year, I'll never understand)

>

> So anyway, I ended up with a $25 gift and no gift recipient. I had

> tried Atkins years before and had *some* success, but his original

> recommendations included a lot of dairy. I had learned in the in-

> between years that I probably had a wheat and/or dairy intolerance,

> and here I had a book in hand that explained why.

>

> When I bought it, I lived in Seattle. I stopped in my local grocery

> store one night about 3am (Woodinville across from the theatre - for

> anyone who lives up there), and ran into the specialty food buyer. It

> turned out her best friend was ALSO Type O and doing the BTD, so they

> carried a TON of BTD-friendly foods. I also got a lot of things at

> PCC.

>

> I started off working on eliminating four things - wheat, dairy, corn

> and pork, and I'll tell you - corn is an insidious little thing that

> is in everyfrickingthing on the market - even MARSHMALLOWS and

> VITAMINS. Rather than get totally anal about it, I cut out as much

> as I can.

>

> I've been a meat & potatoes girl all my life, so the concept of

> eating FIVE fruits & vegetables a day was just totally out there. I

> started off making sure I had ONE. When one became a habit, I worked

> up to two and so forth.

>

> Not to get too graphic, but initially I found that making the changes

> gave me both gas and foul bathroom moments. I also started breaking

> out & felt like I needed to brush my teeth a lot. My friend told me

> that was normal as I was releasing a lot of toxins. It eventually

> went away.

>

> The hardest part is eating out - sure I can make mac & cheese at home

> with rice pasta & mozzarella, but my friends don't serve it, and

> neither do restaurants. Someone puts a plate in front of you with a

> pork chop, mashed potatoes with milk-gravy, cauliflower covered in

> cheese, corn, and an orange slice. There's not one BTD-friendly food

> on that plate.

>

> It's hard to explain that to people, so you *have* to prepare food in

> advance. I actually keep food in my desk at work, and in the car,

> just in case.

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Actually, ceramic on ceramic are highly recommended for young active patients needing a THR.

le, the leg length after thr cannot be guarenteed. I am 8 weeks post op, and to me the operated leg feels longer. I'm hoping it is psychosomatic and left over from posture and gait established from years with a bad hip. I still limp, but some people tell me it's much less than before the operation. I cannot yet wear sandals or heals. I am putting an insert (bought at the drugstore), in the shoe on the unoperated leg. When I am released for more exercise, I'm hoping to strengthen these leg muscles and walk straight, but I'm ready to ask for PT, gait training, or a chiro if I need one.

Good luck w/your thr - I'm 43, had ceramic on ceramic, am thin and active and looking forward to a long pain free life wiht this new hip!

maggie

-------------- Original message from "cocoisland58" <cocoisland58@...>: --------------

And why at your young age would you be better with a ceramic on ceramic implant over a resurfacing or at least a large head metal on metal? Before you go ahead with this you need to ask this surgeon what your lifetime restrictions will be after surgery and how long this implant will last before you need a revision. The answer to the first question should be "no restrictions" and the answer to the second should be "hopefully never". If you get the wrong answers you should run quickly to a surgeon who deals with younger and more active people. Having a resurfacing means that should a revision ever be needed all your femoral bone is still intact. Having a metal on metal resurfacing device or a metal on metal THR means no restrictions. At your age you do not want to be told you can never bend your hip past 90 degrees(think about it)or never cross your legs again. This was unacceptable to me so I had a resurfacing done at age 48

earlier this year. Do not have this surgery until you know your options and can make an informed decision. Deb>> Dear folks,> > I¹ve been a member of this list for about 5 months and have gleaned> priceless information. I¹m hoping someone might be able to give me a little> more specific help. BTW, my name is le, I¹m 41 and I live in Paris,> though I¹m Australian.> > Here¹s my tale:> > Almost 2 years ago, I had some pain in my left hip. Not a lot‹I just noticed> I couldn¹t cross my legs and it was painful to get up from low chairs. It> seemed to be getting better so I didn¹t worry too much about it. Then,> approx. 3 weeks later, I woke up from sleeping on my stoma

ch with my left> leg bent and found my leg swollen from my groin to above my knees‹as though> the muscles were all pushed out. I also wasn¹t standing straight‹I couldn¹t> stand with my feet and knees together, I¹d have to bend my left knee to do> that. Went to the doctor, had x-rays done, and was assured there was no> arthritis present, it was some kind of muscle problem.> > Went to a PT, who told me I¹d been born with one leg longer than the other,> which I refuted, because I was sure that, considering I was 40, I would have> noticed way before that. She said it was my back and though she did help> with unlocking that, (which I think was locked up because I was> compensating) nothing changed the pain in my leg‹although there was hardly> any pain in the hip (in fact, I could pound on my hip and still can), my> quad was really sore.> > Not getting any joy there, after about 10 months, I went to see an> osteopath, who did an absolutely wonderful job of freeing up the muscles and> helping me move easier. Still, he couldn¹t figure out what was causing the> problem. Between him, my doctor and the PT, I was tired of people asking me> why I couldn¹t stand straight‹that¹s what I was paying THEM to work out <g>> > Finally, someone else took a look at the x-rays (the 5th person to do so, 16> months into this) and said ³It¹s arthritis.² I was referred to an ortho, who> I knew wasn¹t the doctor for me because he was so rough. He also said he> wouldn¹t operate because I was too young, I needed to lose weight, and I> could still walk‹even though I could only walk about 10 minutes before I had> to stop. That wasn¹t helped my the fact that I love at the top of Montmartre> on cobblestoned streets, in

a 5th-floor walk-up! I was pretty frustrated> because I couldn¹t lose weight if I couldn¹t move. I had new x-rays that> showed my left hip was 3 cms lower than my right‹no wonder I couldn¹t stand> with my legs straight. The second x-ray technician immediately said ³you¹ll> need a replacement.² Around that time, I was diagnosed with Hashimoto¹s> thyroiditis. Once I started medication for that, I started losing weight and> my head was a lot clearer. In a last ditch effort to try all I could> (considering it seemed that surgery wasn¹t an option at that time), I went> to a chiro, who I think helped in some ways and hurt in others. Though he> said things would get worse before they got better, they got to the point> where I gad to use walking sticks. Not because of my hip but the pain in the> quad/knee. > > The chiro wanted to keep going with treatment (he believes there¹s some> sacroiliac joint involvement) but I got an appointment with an ortho at the> Clinique Jouvenet, which has a very good rep around town. As soon as I saw> the doctor, I knew I was in good hands. He took one look at the x-rays and> said ³When do you want to have the operation?² We discussed a resurfacing> but he felt I¹d be better with a THR, ceramic-on-ceramic.> > That was 3 weeks ago and I¹ll be having the op. on Friday. Of course, I¹m> scared, but I have great friends to hold my hand. My concern is, will> replacing the joint fix the issue of that hip being lower? I¹d hate to come> out of it and see the muscles are still screwed up. Of course, it might be> that the joint needs to be replaced before we can really work on getting the> hip back into the right place, but I¹m interested to know if anyone else has> been in this s

ituation. I¹m really scared that my legs won¹t come back to> the same length‹or close enough, at least, that I can get out of the> Birkenstocks I¹ve been living in. I¹ve got some great red pumps languishing> in the back of my closet.> > I¹m scheduled to stay 5-7 days in the clinic, then I¹ll got to a> ³reeducation facility² for more PT. That¹s the beauty of France‹if you can¹t> look after yourself (I live on my own and those stairs are a bitch), there¹s> always a place to go. BTW, apart from the surgeon¹s 600E fee (which will be> reimbursed) and the 12E/day gap that my insurance won¹t cover for a private> room, everything else is being taken care of by my work insurance. If I¹d> opted to go public, everything would have been covered‹but I¹m not sure what> the wait time would have been, not to mention that my surgeon (> Sorriaux) is warm, caring, and gentle. Sometimes living in France can be> difficult, but not health care. (Apart from people who can¹t read x-rays,> that is!)> > One last thing: I met with the anesthesiologist, who said he wanted to do a> general, but after the discussions here, I¹m telling him I want an epidural.> > Thanks in advance for any information you can give me.> > Cheers,> le> -- > gabrielle@...> http://www.gabrielleluthy.com> http://gabrielleluthy.typepad.com>

[Guest guest]

Yep, my OS did measurements via x-ray before, during, and after the surgery-- he says my legs are exactly the same length now. They just FEEL different! When I went for my post-op and expressed concerns, he spent time showing the xrays to me and explaining how the measurements are taken.

I have researched this, and found there is 'apparent' leg-length discrepancy and 'structural' leg-length discrepancy. Supposedly less than 5% of THR's result in structural leg-length discrepancy. If you have THR for congenital hip dysplasia (as I did), than you will probably have to deal with some degree of apparent leg-length discrepancy and may need gait and posture training.

I will say that everyday I feel more and more 'even' and I'm told my post-op limp is lessening. I am 7 weeks post-op. Still can't wear sandals or heels tho

Maggie

-------------- Original message from "cocoisland58" <cocoisland58@...>: --------------

The reason my surgeon gave me for not using the ceramic on ceramic for younger patients is the restrictions he would have to place on them. He said the ball is smaller and therefore he would impose a 90 degree restriction for life and also no crossing the leg over the other. Now, every surgeon is different so yours probably feels otherwise. I found any restrictions whatsoever unacceptable and that is why a large metal on metal was chosen. The size is anatomically correct and no chance of dislocation. I was resurfaced but the device is the same size as a metal on metal THR. As for leg length discrepancy I was told that measurments would be taken before, during,and after surgery to get it right. The op-leg feels a bit longer right after surgery but once everything "settles" in you should be even. If not, they didn't do a very good job measuring.Deb> >> > Dear folks,> > > > I¹ve been a member of this list for about 5 months and have gleaned> > priceless information. I¹m hoping someone might be able to give me > a little> > more specific help. BTW, my name is le, I¹m 41 and I live > in Paris,> > though I¹m Australian.> > > > Here¹s my tale:

> > > > Almost 2 years ago, I had some pain in my left hip. Not a lot‹I > just noticed> > I couldn¹t cross my legs and it was painful to get up from low > chairs. It> > seemed to be getting better so I didn¹t worry too much about it. > Then,> > approx. 3 weeks later, I woke up from sleeping on my stomach with > my left> > leg bent and found my leg swollen from my groin to above my > knees‹as though> > the muscles were all pushed out. I also wasn¹t standing straight‹I > couldn¹t> > stand with my feet and knees together, I¹d have to bend my left > knee to do> > that. Went to the doctor, had x-rays done, and was assured there > was no> > arthritis present, it was some kind of muscle problem.> > > > Went to a PT, who told me I¹d been born with one leg longer than > the other,> > which I refut

ed, because I was sure that, considering I was 40, I > would have> > noticed way before that. She said it was my back and though she > did help> > with unlocking that, (which I think was locked up because I was> > compensating) nothing changed the pain in my leg‹although there > was hardly> > any pain in the hip (in fact, I could pound on my hip and still > can), my> > quad was really sore.> > > > Not getting any joy there, after about 10 months, I went to see an> > osteopath, who did an absolutely wonderful job of freeing up the > muscles and> > helping me move easier. Still, he couldn¹t figure out what was > causing the> > problem. Between him, my doctor and the PT, I was tired of people > asking me> > why I couldn¹t stand straight‹that¹s what I was paying THEM to > work out <g>> > > > Finally, someone else took a look at the x-rays (the 5th person to > do so, 16> > months into this) and said ³It¹s arthritis.² I was referred to an > ortho, who> > I knew wasn¹t the doctor for me because he was so rough. He also > said he> > wouldn¹t operate because I was too young, I needed to lose weight, > and I> > could still walk‹even though I could only walk about 10 minutes > before I had> > to stop. That wasn¹t helped my the fact that I love at the top of > Montmartre> > on cobblestoned streets, in a 5th-floor walk-up! I was pretty > frustrated> > because I couldn¹t lose weight if I couldn¹t move. I had new x-> rays that> > showed my left hip was 3 cms lower than my right‹no wonder I > couldn¹t stand> > with my legs straight. The second x-ray technician immediately > said ³you¹ll> gt; need a replacement.² Around that time, I was diagnosed with > Hashimoto¹s> > thyroiditis. Once I started medication for that, I started losing > weight and> > my head was a lot clearer. In a last ditch effort to try all I > could> > (considering it seemed that surgery wasn¹t an option at that > time), I went> > to a chiro, who I think helped in some ways and hurt in others. > Though he> > said things would get worse before they got better, they got to > the point> > where I gad to use walking sticks. Not because of my hip but the > pain in the> > quad/knee. > > > > The chiro wanted to keep going with treatment (he believes there¹s > some> > sacroiliac joint involvement) but I got an appointment with an > ortho at the> > Clinique Jouvenet, which has a very good rep around town. As soon > as

I saw> > the doctor, I knew I was in good hands. He took one look at the x-> rays and> > said ³When do you want to have the operation?² We discussed a > resurfacing> > but he felt I¹d be better with a THR, ceramic-on-ceramic.> > > > That was 3 weeks ago and I¹ll be having the op. on Friday. Of > course, I¹m> > scared, but I have great friends to hold my hand. My concern is, > will> > replacing the joint fix the issue of that hip being lower? I¹d > hate to come> > out of it and see the muscles are still screwed up. Of course, it > might be> > that the joint needs to be replaced before we can really work on > getting the> > hip back into the right place, but I¹m interested to know if > anyone else has> > been in this situation. I¹m really scared that my legs won¹t come > back to> > the same length‹or close enough, at least, that I can get out of > the> > Birkenstocks I¹ve been living in. I¹ve got some great red pumps > languishing> > in the back of my closet.> > > > I¹m scheduled to stay 5-7 days in the clinic, then I¹ll got to a> > ³reeducation facility² for more PT. That¹s the beauty of France‹if > you can¹t> > look after yourself (I live on my own and those stairs are a > bitch), there¹s> > always a place to go. BTW, apart from the surgeon¹s 600E fee > (which will be> > reimbursed) and the 12E/day gap that my insurance won¹t cover for > a private> > room, everything else is being taken care of by my work insurance. > If I¹d> > opted to go public, everything would have been covered‹but I¹m not > sure what> > the wait time would have been, not to mention that my surgeon > (

BR>> > Sorriaux) is warm, caring, and gentle. Sometimes living in France > can be> > difficult, but not health care. (Apart from people who can¹t read > x-rays,> > that is!)> > > > One last thing: I met with the anesthesiologist, who said he > wanted to do a> > general, but after the discussions here, I¹m telling him I want an > epidural.> > > > Thanks in advance for any information you can give me.> > > > Cheers,> > le> > -- > > gabrielle@> > http://www.gabrielleluthy.com> > http://gabrielleluthy.typepad.com> >>

[Guest guest]

One of my legs is 1" shorter than the other. I didn't know this until a few months ago because of the (if I may) ridiculous way(s) "professionals" use to measure them. Why don't they stand you up, X-ray the legs, and see what lines up? Anyway, I hypothesize that this leg-length discrepancy is what caused my "mild" scoliosis. I don't feel that the legs are different lengths. So if I were to get a new knee or hip that made them the same length, I think I'd feel that the formerly shorter one was longer than the really longer one, at least for a while (but would be really happy to have equal-length legs).

This makes me think of something funny. If I put my finger on what feels like the middle of the top of my head, it's off to the right by half an inch or so. Has to do with how the nerves are distributed up there. Now that I know it's off, it drives me crazy.

Ann

Re: Re: Another newbie with questions

Yep, my OS did measurements via x-ray before, during, and after the surgery-- he says my legs are exactly the same length now. They just FEEL different! When I went for my post-op and expressed concerns, he spent time showing the xrays to me and explaining how the measurements are taken.

I have researched this, and found there is 'apparent' leg-length discrepancy and 'structural' leg-length discrepancy. Supposedly less than 5% of THR's result in structural leg-length discrepancy. If you have THR for congenital hip dysplasia (as I did), than you will probably have to deal with some degree of apparent leg-length discrepancy and may need gait and posture training.

I will say that everyday I feel more and more 'even' and I'm told my post-op limp is lessening. I am 7 weeks post-op. Still can't wear sandals or heels tho

Maggie

-------------- Original message from "cocoisland58" <cocoisland58 >: --------------

The reason my surgeon gave me for not using the ceramic on ceramic for younger patients is the restrictions he would have to place on them. He said the ball is smaller and therefore he would impose a 90 degree restriction for life and also no crossing the leg over the other. Now, every surgeon is different so yours probably feels otherwise. I found any restrictions whatsoever unacceptable and that is why a large metal on metal was chosen. The size is anatomically correct and no chance of dislocation. I was resurfaced but the device is the same size as a metal on metal THR. As for leg length discrepancy I was told that measurments would be taken before, during,and after surgery to get it right. The op-leg feels a bit longer right after surgery but once everything "settles" in you should be even. If not, they didn't do a very good job measuring.Deb> >> > Dear folks,> > > > I¹ve been a member of this list for about 5 months and have gleaned> > priceless information. I¹m hoping someone might be able to give me > a little> > more specific help. BTW, my name is le, I¹m 41 and I live > in Paris,> > though I¹m Australian.> > > > Here¹s my tale:> > > > Almost 2 years ago, I had some pain in my left hip. Not a lot‹I > just noticed> > I couldn¹t cross my legs and it was painful to get up from low > chairs. It> > seemed to be getting better so I didn¹t worry too much about it. > Then,> > approx. 3 weeks later, I woke up from sleeping on my stomach with > my left> > leg bent and found my leg swollen from my groin to above my > knees‹as though> > the muscles were all pushed out. I also wasn¹t standing straight‹I > couldn¹t> > stand with my feet and knees together, I¹d have to bend my left > knee to do> > that. Went to the doctor, had x-rays done, and was assured there > was no> > arthritis present, it was some kind of muscle problem.> > > > Went to a PT, who told me I¹d been born with one leg longer than > the other,> > which I refut ed, because I was sure that, considering I was 40, I > would have> > noticed way before that. She said it was my back and though she > did help> > with unlocking that, (which I think was locked up because I was> > compensating) nothing changed the pain in my leg‹although there > was hardly> > any pain in the hip (in fact, I could pound on my hip and still > can), my> > quad was really sore.> > > > Not getting any joy there, after about 10 months, I went to see an> > osteopath, who did an absolutely wonderful job of freeing up the > muscles and> > helping me move easier. Still, he couldn¹t figure out what was > causing the> > problem. Between him, my doctor and the PT, I was tired of people > asking me> > why I couldn¹t stand straight‹that¹s what I was paying THEM to > work out <g>> > > > Finally, someone else took a look at the x-rays (the 5th person to > do so, 16> > months into this) and said ³It¹s arthritis.² I was referred to an > ortho, who> > I knew wasn¹t the doctor for me because he was so rough. He also > said he> > wouldn¹t operate because I was too young, I needed to lose weight, > and I> > could still walk‹even though I could only walk about 10 minutes > before I had> > to stop. That wasn¹t helped my the fact that I love at the top of > Montmartre> > on cobblestoned streets, in a 5th-floor walk-up! I was pretty > frustrated> > because I couldn¹t lose weight if I couldn¹t move. I had new x-> rays that> > showed my left hip was 3 cms lower than my right‹no wonder I > couldn¹t stand> > with my legs straight. The second x-ray technician immediately > said ³you¹ll> gt; need a replacement.² Around that time, I was diagnosed with > Hashimoto¹s> > thyroiditis. Once I started medication for that, I started losing > weight and> > my head was a lot clearer. In a last ditch effort to try all I > could> > (considering it seemed that surgery wasn¹t an option at that > time), I went> > to a chiro, who I think helped in some ways and hurt in others. > Though he> > said things would get worse before they got better, they got to > the point> > where I gad to use walking sticks. Not because of my hip but the > pain in the> > quad/knee. > > > > The chiro wanted to keep going with treatment (he believes there¹s > some> > sacroiliac joint involvement) but I got an appointment with an > ortho at the> > Clinique Jouvenet, which has a very good rep around town. As soon > as I saw> > the doctor, I knew I was in good hands. He took one look at the x-> rays and> > said ³When do you want to have the operation?² We discussed a > resurfacing> > but he felt I¹d be better with a THR, ceramic-on-ceramic.> > > > That was 3 weeks ago and I¹ll be having the op. on Friday. Of > course, I¹m> > scared, but I have great friends to hold my hand. My concern is, > will> > replacing the joint fix the issue of that hip being lower? I¹d > hate to come> > out of it and see the muscles are still screwed up. Of course, it > might be> > that the joint needs to be replaced before we can really work on > getting the> > hip back into the right place, but I¹m interested to know if > anyone else has> > been in this situation. I¹m really scared that my legs won¹t come > back to> > the same length‹or close enough, at least, that I can get out of > the> > Birkenstocks I¹ve been living in. I¹ve got some great red pumps > languishing> > in the back of my closet.> > > > I¹m scheduled to stay 5-7 days in the clinic, then I¹ll got to a> > ³reeducation facility² for more PT. That¹s the beauty of France‹if > you can¹t> > look after yourself (I live on my own and those stairs are a > bitch), there¹s> > always a place to go. BTW, apart from the surgeon¹s 600E fee > (which will be> > reimbursed) and the 12E/day gap that my insurance won¹t cover for > a private> > room, everything else is being taken care of by my work insurance. > If I¹d> > opted to go public, everything would have been covered‹but I¹m not > sure what> > the wait time would have been, not to mention that my surgeon > ( BR>> > Sorriaux) is warm, caring, and gentle. Sometimes living in France > can be> > difficult, but not health care. (Apart from people who can¹t read > x-rays,> > that is!)> > > > One last thing: I met with the anesthesiologist, who said he > wanted to do a> > general, but after the discussions here, I¹m telling him I want an > epidural.> > > > Thanks in advance for any information you can give me.> > > > Cheers,> > le> > -- > > gabrielle@> > http://www.gabrielleluthy.com> > http://gabrielleluthy.typepad.com> >>

[Guest guest]

I receive IVIG treatments every four weeks. I get 45 grams over 12 hours. If

I get it any faster I get sick with a severe headache and upset stomach. My

advice is to go slower with it. You feel better after the treatment too if it is

given very slowly.

I also found that the low concentrations worked better. It is very thick

stuff and 10% was too much for my veins to handle. I get benedryl at the

beginning

and again half way through. I get a shot of lasix at the end.

The benedryl makes me so sleepy that I go to bed and sleep through most of

it. The nurse comes to my home to administer it and stays the entire time. She

checks my blood pressure and other vitals signs on a regular basis.

For some reason I have always found that my hand veins work the best for the

iv. You would think that the bigger veins would be better but that has not

been true in my case.

If I can be of any other help, feel free to ask. I have been getting IVIG for

many years now and have it down to a science that works for me. 40 grams in

five hours would be brutal for me, but I guess everyone is different.

By the way, the IVIG has worked wonderfully for me.

[Guest guest]

Can someone explain what IVIG is and what it is used for.  I have scleroderma

and no doc has ever approached me with this.  What is IVIG?  Thank you, Dolores

& Mike

From: njteabag@... <njteabag@...>

Subject: Re: rheumatic Re: Another newbie with questions

rheumatic

Date: Sunday, December 28, 2008, 10:23 PM

I receive IVIG treatments every four weeks. I get 45 grams over 12 hours. If

I get it any faster I get sick with a severe headache and upset stomach. My

advice is to go slower with it. You feel better after the treatment too if it is

given very slowly.

I also found that the low concentrations worked better. It is very thick

stuff and 10% was too much for my veins to handle. I get benedryl at the

beginning

and again half way through. I get a shot of lasix at the end.

The benedryl makes me so sleepy that I go to bed and sleep through most of

it. The nurse comes to my home to administer it and stays the entire time. She

checks my blood pressure and other vitals signs on a regular basis.

For some reason I have always found that my hand veins work the best for the

iv. You would think that the bigger veins would be better but that has not

been true in my case.

If I can be of any other help, feel free to ask. I have been getting IVIG for

many years now and have it down to a science that works for me. 40 grams in

five hours would be brutal for me, but I guess everyone is different.

By the way, the IVIG has worked wonderfully for me.

[Guest guest]

Dolores,

 

here is a good explanation:

 

Study Shows IVIG Safe, Effective Treatment for Muscle DiseaseSkip secondary menu

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For release: Wednesday, December 29, 1993

Patients with a painful and debilitating muscle disease called dermatomyositis

showed dramatic improvement on a treatment regimen of intravenous immune

globulin (IVIG) during a recent double-blind, placebo-controlled trial. The

study, which was conducted at the National Institute of Neurological Disorders

and Stroke (NINDS), will be published in the December 30 issue of the New

England Journal of Medicine .*

" The IVIG treatment resulted in some of the most significant improvements I have

ever seen in patients with neurological disease. In addition, the treatment was

safe and well tolerated, " said Marinos C. Dalakas, M.D., chief of the NINDS

Neuromuscular Diseases Section and author of the study.

" What's exciting about this study is the promise it holds for treating a variety

of neuromuscular disorders, " said A. Grady, Ph.D., acting director of

the NINDS. " We are always encouraged when the scientific knowledge gained from

one study can extend to helping an even broader group of patients. "

Dermatomyositis belongs to a family of auto-immune diseases called " inflammatory

myopathies " (including polymyositis and inclusion body myositis) that cause

progressive muscle weakness and inflammation, and affect about 1 out of 100,000

persons. Patients with dermatomyositis have difficulty performing everyday

activities like getting dressed, getting up from a chair, and climbing stairs.

As the disease progresses, patients are often unable to walk. Dermatomyositis is

also characterized by a chronic scaly skin rash on the eyelids and hands. The

disease affects both children and adults and females more often than males.

The study was double-blinded, meaning that neither the doctor nor the patients

knew which therapy patients were receiving. In the trial, 15 dermatomyositis

patients were randomly assigned to receive one monthly infusion of high-dose

immune globulin or placebo for three months, at the end of which they had the

option of crossing over to the other treatment. (Initially, 8 were assigned to

immune globulin and 7 to placebo.) After crossover a total of 12 patients had

received immune globulin. Nine of these patients, who were severely disabled,

experienced major improvement and resumed almost normal function, two of the

patients showed mild improvement, and one had no change in condition.

Of the 11 placebo-treated patients, none showed a major improvement, 3 had a

mild improvement, and 3 had no change in their condition and 5 had a worsening

of the condition. Four of the patients who crossed over to the placebo after

major improvement with IVIG therapy returned to their original condition of

disability--two returned to wheelchairs.

The study authors described the dramatic response in the group treated with

IVIG: " These patients had not felt so strong since the onset of their disease

two to six years earlier...They were able to get up from the wheelchair, run,

climb stairs and behave normally. "

One of the patients who received the IVIG treatment, said: " It seemed unreal! I

was able to do many of the things I had been unable to do for more than a year. "

The clinical assessment of the patients' physical improvements was based on

changes in muscle strength, neuromuscular symptoms as measured by testing the

function of specific muscle groups, and changes in the rash, photographed before

and after the infusions. The investigators also performed repeat muscle biopsies

on the patients, which allowed them to measure muscle fibers and look at other

cellular changes.

The study was prompted by the need for a safer and more effective therapy for

dermatomyositis patients who have become resistant to existing treatments. The

standard therapies have been corticosteroids and other immunosuppressive drugs,

which for many patients are not effective in controlling the disease. Those

drugs can also cause a variety of serious side effects including hypertension,

bone marrow suppression, lung disease and infections.

Researchers were particularly encouraged by the safety of the IVIG treatment.

The only reported side effects were headaches during the course of the 12-hour

infusion, but even so, two patients who reported severe headaches stated that

the benefit from the treatment far outweighed the adverse effect.

Dr. Dalakas said this study illustrated some of the specific actions of the IVIG

treatment on the immune system in the patients. Because immunoglobulins are the

major carriers of the body's disease-fighting antibodies, the variety of

antibodies contained in the drug preparation--made up from a pool of 5000 normal

donors--seemed to counteract the antibodies found in the patient. The IVIG also

interfered with the action in the patient's immune system that generated

muscle-damaging factors.

IVIG has proven effective for the treatment of other neuromuscular diseases

including Guillain-Barre syndrome. The treatment is now being studied by NINDS

for polymyositis, myasthenia gravis and neuropathies. IVIG has also been tried

as a treatment for multiple sclerosis, with varying results.

" The major concern about the IVIG therapy right now is its expense, " said Dr.

Dalakas. Cost estimates for a single infusion range from $8,000 to $26,000.

Patients require the infusions about every six weeks in order to maintain the

clinical benefits.

The NINDS, one of the National Institutes of Health located in Bethesda, Md., is

the nation's principal supporter of research on the brain and nervous system.

The Institute is a lead agency for the Congressionally designated Decade of the

Brain.

* " A Controlled Trial of High-Dose Intravenous Immune Globulin Infusions As

Treatment for Dermatomyositis. " Marinos C. Dalakas, M.D., Isabel Illa, M.D.,

M. Dambrosia, Ph.D., Shawke A. Soueidan, M.D., P. Stein, M.D.,

Otero, M.D., T. Dinsmore, D.O., and McCrosky, R.N., New

England Journal of Medicine; December 30, 1993; pp 1993-2000 Volume 329, Number

27.

Date Last Modified: Tuesday, October 28, 2008

 

Related ItemsFact Sheet

 regards,

Eva

From: njteabagaol (DOT) com <njteabagaol (DOT) com>

Subject: Re: rheumatic Re: Another newbie with questions

rheumatic@grou ps.com

Date: Sunday, December 28, 2008, 10:23 PM

I receive IVIG treatments every four weeks. I get 45 grams over 12 hours. If

I get it any faster I get sick with a severe headache and upset stomach. My

advice is to go slower with it. You feel better after the treatment too if it is

given very slowly.

I also found that the low concentrations worked better. It is very thick

stuff and 10% was too much for my veins to handle. I get benedryl at the

beginning

and again half way through. I get a shot of lasix at the end.

The benedryl makes me so sleepy that I go to bed and sleep through most of

it. The nurse comes to my home to administer it and stays the entire time. She

checks my blood pressure and other vitals signs on a regular basis.

For some reason I have always found that my hand veins work the best for the

iv. You would think that the bigger veins would be better but that has not

been true in my case.

If I can be of any other help, feel free to ask. I have been getting IVIG for

many years now and have it down to a science that works for me. 40 grams in

five hours would be brutal for me, but I guess everyone is different.

By the way, the IVIG has worked wonderfully for me.

[Guest guest]

Hi Eva,  Thank you very much.  I will research the information.  Dolores

From: njteabagaol (DOT) com <njteabagaol (DOT) com>

Subject: Re: rheumatic Re: Another newbie with questions

rheumatic@grou ps.com

Date: Sunday, December 28, 2008, 10:23 PM

I receive IVIG treatments every four weeks. I get 45 grams over 12 hours. If

I get it any faster I get sick with a severe headache and upset stomach. My

advice is to go slower with it. You feel better after the treatment too if it is

given very slowly.

I also found that the low concentrations worked better. It is very thick

stuff and 10% was too much for my veins to handle. I get benedryl at the

beginning

and again half way through. I get a shot of lasix at the end.

The benedryl makes me so sleepy that I go to bed and sleep through most of

it. The nurse comes to my home to administer it and stays the entire time. She

checks my blood pressure and other vitals signs on a regular basis.

For some reason I have always found that my hand veins work the best for the

iv. You would think that the bigger veins would be better but that has not

been true in my case.

If I can be of any other help, feel free to ask. I have been getting IVIG for

many years now and have it down to a science that works for me. 40 grams in

five hours would be brutal for me, but I guess everyone is different.

By the way, the IVIG has worked wonderfully for me.

[Guest guest]

I was really scared the first time. I received a much higher loading dose and

was given IVs for three straight days in the hospital. My doctor always does

the first ones in the hospital in case of reactions. Then if there are no

problems he gives them in the home.

I am sensitive to almost all medicines. I react to NSAIDS, prednisone, a lot

of antibiotics, etc. But the IVIG has worked great. Like I said before I only

react if it is given too fast, and then it is a bad headache and upset

stomach.

See if you can get the rate slowed down a little. I always take the benedryl

(in shot form) and some aspirin.

Also, drink a lot the day before so you are well hydrated. If your blood

pressure is affected after the treatment try some lasix. I was okay right after

the treatment but then would get a headache and high blood pressure a few days

later. Now I get the treatments on Tues. for 12 hours and then a lasix shot

right then.

Wednesday I have blood drawn to check for any kidney or liver etc. problems.

Then Thursday night my nurse comes back and gives me another shot of lasix.

That prevents any after effects.

If you have any other questions, feel free to ask. I realize we are all

different, but IVIG has been a lifesaver for me. I have been getting it for

years.

It is not a cure. It is a treatment that helps manage the disease.

Good luck.

[Guest guest]

I'm so glad for you a. I hope it helps your condition.