Re: arthritis in the spine

[Guest guest]

prednisone-10mg tablets,my hand is ok.thank you

thomas scandaliato <tscandaliato@...>

[Guest guest]

Hi Traface22,  I am sorry that you have so little medical opportunities

available to you. Have you tried alternative medicine like acupuncture, water

therapy, etc... some alternative medicine might help you keep out of the

wheelchair a little longer hopefully. I just started prednisone this week, I

have been in bed all week in pain. I have been on Humira for a month and feel no

change, I go back for blood work next month and may start methotrexate. I am

waiting to set up an appointment for acupuncture. I have such pain in my lower

back and up by my neck, it is almost crippling. I do understand what you are

going through, I have to use crutches when I walk so I don't fall if my knees

and/or ankles give out. I don't know how much of a pep talk this is but know

that you are not alone, their are lots of us who understand what you are going

through. If you have not done so do look into alternative medicine for some

relief.

Lori in AZ

[Guest guest]

I just started taking prednisone 10mg for my pain and inflammation. I have PsA

everywhere. I have been in bed all week. I am hoping to switch to MTX next month

to take along with my Humira. I do feel better, still have some back pain so we

will see.

lori sandolo <antlo2003@...>

[Guest guest]

I've been on prednisone now for over 7 years and while it has kept me alive it

sure has it side effects. I started at 10mg and now have gone all the way from

60mg to 17mg, which is what i currently take. I try to lower it all the time to

at least 15mg, and it constantly seems i have repeated problems when i lower the

amount. I also have asthma and COPD which normally requires a higher dose to

make a difference in your breathing. It will make you feel better, but once you

stop it, the pain comes back as well as other symptoms. I hope the other drugs

will help you and the chances are you will find one that will. Steroids are

great for a short period of time, but be careful if your doctor leaves you on

them for months. Good luck, Fran

[Guest guest]

Lori,

Reading your post reminded me so much of a flare my daughter experienced a

couple of years ago.  Unlike other flares, this one started in her lower back

(she'd tried probiotics at doctor's suggestion and we know now they were the

cause) and worked it's way up her back to her neck.  She spent 3 months in a

wheelchair when crutches got too hard. She's allergic to prednisone. 

Methotrexate and Plaquenil proved useless and she was already on  Enbrel which

continued to stop the arthritis everywhere but her back. She's at a research

university studying arthritic inflammation. It is a complex process involving

several proteins called cytokines which seem to be out of balance in our bodies

causing inflammation. Humira and Enbrel target the inflammatory cytokine TNF. 

Big pharma has decided that's the magic ticket for all of us and continues

making profitable clones (Simponi).  Dr. McGonagle in UK has experimented with

Kineret for those of us who

don't adequately respond to TNFs and has had promising results.  My daughter

took the research to her doctor and was out of the wheelchair after three days

of Kineret!  It stopped the flare in her back that TNF wouldn't touch. Since

Kineret is currently only approved for rheumatoid and not considered very

successful for them my doctor thought this was scandalous.  I'm for anything

that let's my daughter walk and live a normal life. When, after several years,

my dose of Enbrel wasn't enough  to stop progression of my disease my doctor was

amenable to increasing it, which did the trick and put me back in remission. In

fact, if you have plaque psoriasis a double dose is recommended at the beginning

now. I think you can find in this group people who have increased their Humira

by taking it once a week instead of every two weeks and found it works for them.

Try looking beyond the standards for treatment. Anything that fights

inflammation can

be your friend.  You're right: there are lots of us who understand what you're

going through.

Janette

[Guest guest]

Jannette: can you offer any information as to why probiotics caused a flare?

Seems like a really weird reaction.

Your e-mail was really full of interesting info. Thanks . . . .

Joanna Hoelscher

[Guest guest]

Janette,

  I am not taking probiotics, I take so many pills that I will cut out anything

I don't believe I need. I too have trouble with my back (not sure if I mentioned

it already) I will be taking m third injection of Humira this weekend, my Rheumy

says it can take a few months before I notice a difference. I hope she is right

and I am not wasting my time with these shots. I try to keep up with as much

medical info as I can to see if there is anything new for PsA (it helps working

in a pharmacy). I am hoping that I will have time before I really have to turn

to disability for income. I would really like to be kept up to date with the

info you and your daughter get on new treatments. Thank you. Have a good, pain

free day.

Lori AZ

[Guest guest]

In response to: can you offer any information as to why probiotics caused a

flare?

In our family of related diseases are reactive arthritis (Reiters) which is

often caused by bacteria such as Salmonella, Shigella,

Yersinia or Campylobacter, which cause dysentery

and enteropathic arthritis associated with IBD. 

http://www.spondylitis.org/about/

A normal gut bacteria called Klebsiella or rather, our abnormal reaction to it,

is the basis of a diet called the London diet that tries to starve this

particular bug out of our guts and help our arthritis. 

http://www.kickas.org/molecular_mimicry.shtml

While the London diet didn't help me, I do garden and eat my own cooking

whenever possible because my arthritis does flare often after I've eaten out. 

This is not from the really bad bacteria that causes food poisoning but my

body's reaction to " good " gut bacteria that doesn't bother most people.

Janette

[Guest guest]

Dear Lori,

Thanks for the compliments on my email. As far as jobs go, it¹s a hard

situation for everyone and everyone's situation is always unique. My

husband and I worked together side by side in an insurance office that we

co-own and I really had the best of both worlds for a long time. Like you I

was diagnosed with fibro ages before they finally found PA and all sorts of

other things. We had the office set up so if I got tired I could rest in

the back office, and we even had a bed in there if the girls were sick so

they could come in instead of being home alone. That way I could keep an

eye on them and not have too much guilt as a working Mom. Plus I could

leave early if I needed too, it¹s n to like my boss could fire me. I think

my husband and I were unusual because we really got along most of the time

working together.

When PA hit my jaw though I had a horrible time and I remember trying to

talk on the phone with ice packs on my face until the pain got completely

unbearable. Finally I started missing more and more work and coming in

later all the time. My PA was spreading by then and I decided I would work

from home as long as I could. That worked for a few more years, but now

it¹s to the point that having my feet down causing unbelievable pain due to

developing a condition called erythromelalgia. It causes your feet, hands,

face or basically anywhere, though those are the 3 main areas that are

affected to turn bright red and burn like mad. My hands are burning to day.

I either work through the pain until I can't take it anymore, or I have to

elevate my feet and relax and basically do nothing until it lets up. I keep

my house at 69 degrees all year long so you can imagine how high my air

conditioning bills are in the summer in Florida. At least this winter has

been nice that way since I don't have to spend a fortune on heating bills.

It's basically a form of neuropathy that is a symptom of other diseases. It

goes along with all sorts of auto immune diseases, and I think that's where

mine comes from since I don't have it in my family history as far as I know.

I am lucky that my husband has been able to work without me, even though he

hasn't been happy about it and never h as really adjusted that well. I

think we worked well together and now the things I did just never have

gotten done the right way since I left. So it's been great that I haven't

been the sole provider, but it's been a big financial adjustment because we

had to replace me at work.

I can understand your problems if you are the only breadwinner in the

family. I know people work themselves to death, and there comes a time when

you just can't go on anymore. I know filing for disability is a nightmare

and no one who is really sick ever wants to do it I've started the process,

but keep putting it off week after week just finishing it for some reason.

As far as your fatigue goes, I would talk to your doctor about Provigil. I

know other members have mentioned it and it really does help keep you awake

during the day. It's not an " upper " , but it has been used for a long time

for people who suffer from falling asleep during the day to the point where

it is dangerous for them to drive a car. I've done that, gone to sleep

while driving, the good thing is I'm only driving my wheelchair...lol. I'm

surprised I haven't ended up in the pool by now, but I've had some rough

awakenings to say the least. One time I feel asleep going back into the

house and missed the door completely. I ran right into a cement wall and my

knees took most of the damage. Since they are in such bad shape now, it was

all I needed. I'm sure it was funny if someone saw me crash into the wall,

but it hurt to say the least. I work up and my dogs were looking at me,

like ³she made a bad turn...lol¹¹ So far I'm glad I haven't run over them

or anyone else, but it is kind of scary. So see if Provigil is available.

I think I need mine increased, but you might do fine on the low dose at

first.

Lori, I don't know if any of this helps, but there are drugs out there that

can help that don't have horrible side effects. You just have to find them

and find a doctor willing to help you with all levels of your disease. I

know I talk about positive outlooks a lot and it is the right way to

approach all of our problems. Yet I find it sometimes very hard to do what

I preach. Sometimes the pain drives me crazy too and sometimes the only

escape is to sleep for awhile. I know it helps me to rest more, but it is

so easy to just sleep all day too. Then I end up feeling depressed and

overwhelmed again too.

I Hope this helped some Lori. Since everyone has a different situation it's

hard to know exactly what to say. I hope you can get some rest this weekend

and can enjoy the coming Easter. My older daughter will be home the next

two weekends and she always cheers me up. Being around positive people

makes a huge difference with me.

Write me anytime Lori and take care of you.

Fran in Florida

'

[Guest guest]

Hi Fran,

Thank you for your email and your advice. I am going to ask my rheumy about

Provigil next appt. I have started listening to my body more and when it says

I'm tired I rest, I think if I push myself it only makes the symptoms worse and

I carry Vicodin with me wherever I go. I don't know what I'm going to do yet

with disability, I want to give the meds time to work and my job keeps saying

they will be offering a work from home program that would be great. Well, stay

well and have a pain free day.  Lori in AZ