Old posts from Hobbs for newbies

[Guest guest]

WOW. . . This info is invaluable. Please, if you have more, keep posting.

THANK YOU, THANK YOU, THANK YOU. KATHRYN

Old posts from Hobbs for newbies

> Hi all, I've been looking through the archives and have come across some

> posts from Hobb. She is a member of this group, but has not posted

in

> a while do to her work and research. I know when I was new to the group,

her

> posts were of great help to me. I hope some of the newbies get some

> information from these posts. If you have already read and remember them

> (which I didn't) LOl, please just delete them. Anyone can go through the

> archives and retrieve posts.

>

>

>

> Martha and all Newbies,

>

> If you have not read Dr. Trentham's article about RP on the internet

> you

> should do that first. Search on keyword TRENTHAM It should be

> the

> first option your search engine finds. Print several copies to give

> your

> docs and to carry with you if you are away from home.

>

> RP is one of the diseases that is a real catch 22. If you don't take

> treatment you might be OK if your case is mild enough. But it is a

> PROGRESSIVE disease and even though it may remit for a while, it

> comes back

> and does more damage. It is ultimately fatal if left untreated.

> Drugs can

> control its progress and the sooner you start taking it the better

> your

> chances of long survival and less disability. But the side effects

> of the

> medicines are also risky. You simply have to decide if the risk is

> worth the

> benefit. Not everyone will suffer the worst side effects. You

> should ask

> your doctor about the percentages of people who do.

>

> Risk without treatment: Lots of pain, saddle nose, floppy ears,

> blindness,

> deafness, collapsed bronchial tubes, damaged heart valves and aorta

> (surgery), collapsed rib cage -- etc., and death.

>

> Your doctor should be a Rheumatologist who has experience with

> Vasculitis if

> not with RP. If he does not order proper testing of your hearing,

> eyes,

> heart and bone density (maybe lung capacity, too) in order to

> monitor

> progress of your RP it may indicate he doesn't understand the

> disease. Find

> one who will order it.

>

> In some cases if you have bad side effects you can change to a med.

> that

> won't affect you as much. In other cases you may be stuck with only

> one or

> two choices because of having Vasculitis along with the RP.

>

> Do not put yourself on any vitamin or supplement without checking

> drug

> interactions first. Sometimes a pharmacist will know more than your

> doctor

> and you can tell the doctor what the pharmacist said when you ask

> about

> taking something new.

>

> Almost all RP patients must take prednisone. They start at a high

> dose and

> gradually work down to a maintenance dose or nothing at all. If

> there is a

> flare they increase it again. It is an anti-inflammatory. RP is an

> inflammatory disease.

>

> Dose of prednisone during a flare is often related to body weight.

>

> Prednisone side effects:

> 1) Bone loss. I take FOSAMAX and Monistat Soy

> (natural

> progestin for older women) and at least 1500 calcium daily. Will not

> know

> how bones are affected until next scan.

> 2) Large Muscles weaken. Legs get really skinny

> on high

> dose (I started at 80 mg and legs weakened quickly). Right kind of

> exercise

> like no-pressure rotations on a stationary bike (I started at 3-5

> minutes,

> now up to 15 minutes) will keep legs, arms (swing 2# weights, nothing

> heavier) in conditon so they come back to normal quickly as dose is

> reduced

> to 10 mg maintenance. Dose is increased again with flares.

> 3) Feeling " wired " can't sleep. I use Restoril,

> sometimes 2

> if I wake up around 2:00 am and can't get back to sleep for 30

> minutes --

> take a 2nd then. If the sleep aid your doc prescribes doesn't work,

> ask for

> a different one until you find one that does.

> 4) Feeling quick tempered or weepy: I get nasty from

> time to

> time but my husband knows it is the Pd, not the real me. He just

> reminds me

> he knows that so I can feel a little guilty (:-)))). When I find

> myself

> overreacting to something (quick to tears) I take St. 's Wort

> 500s 3x a

> day for a week or two and it really helps me keep a level mood.

> 5) Bone marrow problems and potential Leukemia

> with

> prolonged use.

> The object of taking an immuno-suppressant with prednisone is to try

> to get

> you off the prednisone completely or down to a much less risky dose.

> 10 mg.

> is about what the body produces naturally and the risk of Leukemia is

> much

> reduced if you stay on that dose for a long time.

> 6) Puffy face and weight gain. Prednisone takes the

> fat from

> under your skin and redeposits it around your face, shoulders and

> tummy

> first. You get " thin skinned " and a " flushed " look. You get a

> moon face

> (round and puffy) and " beer belly " (I look 7 months pregnant!) but

> your legs

> and arms might be really skinny. Prednisone increases your appetite

> and the

> higher the dose the worse it is -- if you have good eating habits to

> start

> and know that your hunger is Pd, not real hunger you may be able to

> control

> your own appetite by training yourself to ignore hunger pangs at the

> wrong

> time of day. Knowledge is power!!! As the dose is decreased that

> is easier

> to control. Prednisone makes you hold fluid and you may " blow up "

> like a

> balloon. That effect will also diminish as your dose decreases.

> Drinking

> more water sometimes helps you to get rid of of the fluid, strange as

> that

> sounds.

> 7) Facial hair grows. I have a light fuzz on the

> sides of my

> cheeks and grew a mustache of fine but darker hair which I bleached

> with

> facial hair bleach from a beauty supply shop. When it was still

> noticeable

> after bleaching I removed it with NUDIT for facial hair removal --

> recommended by a dermatologist.

> 8) Eye pressure increases. Danger of glaucoma or other

> damage

> from high eye pressure. Be sure to have regular eye exams to know

> your

> status in this respect. Also for signs of RP related problems in the

> eyes

> (Scleritis). Per list members eye pressure usually goes down when

> prednisone

> is decreased. But what is too high varies from patient to patient.

> Any eye

> pain must be reported at once.

> 9) Really bad heartburn. Ask your doctor to give you

> something for that when he prescribes the prednisone. I took

> Prelosec twice

> a day until I got down to 20 mg. prednisone. Now I take only one and

> some

> Tums if I need something more from time to time. Drink lots of water.

>

> Prednisone alone generally does not control the disease. Dr.

> Trentham's

> article and the links to the home page there will give you a good

> description

> of all of the drugs that can be used to control RP. Which one you

> use

> depends on your own reactions and just what your symptoms are. For

> example,

> one list member said that Dapsone is especially good for ear

> problems (inner

> ear edema can lead to constant dizzyness to the point of room

> spinning and

> nausea, ear-ringing and eventual deafness). Although I have

> definite inner

> ear problems I don't take Dapsone at present because I also have

> polyangiitis

> (vasculitis) which caused bleeding lungs and kidneys. Those symptoms

> have to

> be controlled because they are more life threatening than the ear

> problems so

> I have to take Cytoxan. If the polyangiitis seems to be in full

> remission I

> may be able to change to another more benign medicine later that is

> more

> specific for RP symptoms.

>

> Side effects of cytoxan include damage to the bladder and liver, bone

> marrow

> suppression and anemia, tummy problems, bleeding (gums especially),

> bruising, little purple marks on skin that come and go and shingles --

>

> especially if you have already had shingles. You have to be sure to

> drink

> LOTS of water and void with the slightest urge in particular within

> first

> four hours after taking the med. (I told my husband I should replace

> my

> computer chair with a potty chair!!)

>

> Hair loss is also significant. I lost a lot of mine -- wear a wig in

> public

> but have been using Rogain 5% for men for about 45 days and have a

> lot of new

> growth. You may actually lose some hair from being really sick

> before being

> diagnosed like I was. It is hard to tell if I lost the hair from

> that or

> from the cytoxan or both. All I know is that I am still taking 100

> mg

> cytoxan a day and the hair is regrowing since I started using

> Rogaine. It

> might have come back without the Rogaine -- we will never know that

> for sure.

>

> Cyclosporin is a hair grower. Organ transplant patients who take

> Cyclosporin

> with Cytoxan don't have much hair loss per a cousin who is a

> cardiologist at

> Cleveland Clinic. Some RP patients take Cyclosporin. It may

> increase the

> growth of facial hair as one side effect. I don't know what the

> others are

> because when I asked my doctor about it the response was that adding

> Cyclosporin with its side effects was unnecessary because I was doing

> so well

> on the Cytoxan alone.

>

> Immuno-suppressants will make you more susceptible to infections if

> you are

> often in crowded, unventilated places or on flights over two hours in

> an

> aircraft. Avoid those situations as much as possible. Wash your

> hands

> religiously in rest rooms and if you have to touch a doorknob when

> leaving

> have antiseptic gel in your purse to put on your hands afterwards or

> keep a

> paper towel in hand to cover anything you touch as you leave. Avoid

> touching

> your eyes, mouth or nose as much as possible.

>

> Keep a list of all your medications, Dr. Trentham's article, and your

> doctor's name, address, phone numbers, pager, email, etc. for

> emergency

> contact in your car's glove compartment and in your purse. If you

> have an

> insurance case manager or medical insurance contact, add that info

> along with

> your insurance numbers. Make sure it says how much your medicine

> should be

> increased if there is an acute flare. Always have it with you when

> you are

> away from home. Make sure family members have a copy and know what

> to do for

> you and who to call if you should be with one of them when a flare

> occurs --

> like vertigo so bad you cannot walk. Have an alternate doctor's

> name in

> case your regular one cannot be reached if you need hospitalization --

> work

> out who that will be with your doctor. It is usually someone in the

> same

> office who your doc will keep informed about you so you can get help

> when the

> regular doc is away.

>

> My first flare was in November of 1998. By June of 99 I had double

> pneumonia

> and bleeding kidneys. Was finally diagnosed in August/September 99

> and began

> prednisone late August, Cytoxan late September. After less than 5

> months on

> treatment all the internal bleeding has stopped, kidneys seem

> normal. My

> prednisone is already down to only 15 mg and will be 10 mg by next

> month. My

> puffy face is going away (the tummy is still there) and legs are

> almost

> normal strength.

>

> When the flu was the worst in our city we did not go to church for

> two weeks

> because of the risk of exposure. I had both flu and pneumonia shots

> this

> year and so far have had no problems. My doc has recently given me

> permission to take longer flights without putting on a surgical mask

> after

> two hours because I am doing so well. I will be at two conferences

> over the

> spring-summer, maybe three. She said OK as long as the rooms

> involved are

> large and well-ventilated.

>

> I cannot imagine where I would be without treatment -- probably on

> the road

> to rapid kidney failure or death from pneumonia. In my opinion the

> risk

> from side effects of the drugs is one I am willing to take if certain

> painful

> death is the other option.

>

> Hobbs

> Colorado Springs

> ---

>

>

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

>

>

[Guest guest]

Thanks, and , that was very informative!

[Guest guest]

Can we put some of these posts on the

polychondritis.org site, so anyone can see them

anytime?

__________________________________________________

[Guest guest]

Hey ,

I think I read that is off doing research or involved in research.

Does she have RP? Is she in the medical profession? After my 3 miles on

the treadmill, I have muscle pain in my legs that I didn't feel when my

prednisone was at 40 mg. That was this summer. Now, I have managed to get

the pred tapered down to 7.5mg and my goal is 5 mg by Feb. 1. But without

the super-anti-inflammatory qualities of prednisone I'm nagged by muscle

aches. So I take Motrin. Do you think these aches are related to the pred?

I'm hoping as my body rids itself of all or most of the pred, this

side-effect will go away. All along, I thought it was the Cytoxan I take

daily (100 mg). Live and learn. That's what I like about this group.

Thanks.

Re: Old posts from Hobbs for newbies

> In a message dated 1/9/02 5:18:37 PM Pacific Standard Time,

> katdavis@... writes:

>

> << WOW. . . This info is invaluable. Please, if you have more, keep

posting.

> >>

> , I know there is lots more... I will keep digging through the

> archives. is a great source of information. Hope she comes back

soon.

>

>

>

>

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

>

>

[Guest guest]

<< Can we put some of these posts on the

polychondritis.org site, so anyone can see them

anytime?

>>

I don't know Martha. Since these are just posts from a member, I don't know if we can legally put them on. I will ask Roy. I would think that it would have to be from a dr. I'll ask.

I have some of them also... couldn't we write Hobbs and get her permission?

Lu

[Guest guest]

In a message dated 1/11/02 3:42:57 PM Pacific Standard Time, Lu1953@...

writes:

<<

I have some of them also... couldn't we write Hobbs and get her

permission?

Lu

>>

Lu, I think posts from support members should stay in the group and not put

on our site. I think it might cause legal problems. Let's ask Roy. LOL

hugs

[Guest guest]

Lu, I think posts from support members should stay in the group and not put on our site. I think it might cause legal problems. Let's ask Roy. LOL

well, if we had her permission, I don't see why it would be a problem, she had a lot of informative info. Just my 2 cents. You guys do whatever.

Lu