RA and Shingles

[TedTheCat]

So, the standard warning for biologics is to report to the rheumy if a
rash develops. Do it! The rash could be shingles, a disease which
especially likes immuno-compromised folks like us, and a disease whose
severity and length can be lessened if treatment is started
promptly.

I got it.

Has anyone before me gotten shingles on top of RA? Any and all
comments or stories are welcome.

[helen anonymous]

I have discontinued Humira because of a weeping itching body rash
diagnosed as medication induced cutaneous lupus. (like I needed another
disease!)

Since doctor is unable to pinpoint the offending drug, I have
discontinued all medications except for absolutely essential ones like
heart meds.

[x x]

Afternoon Ted. I've had RA for many years but I have never had a Rash
such as that, so I'm sorry that I cannot be of help to you in that
Department. I hope some very good advice and help comes to you soon.
Moe

[CollCon]

"TedTheCat" <tedth...@aol.com> wrote in message
news:0b88513e-d9d0-4876...@x19g2000yqh.googlegroups.com...

------------------------------------------

Yes -- have had both. The shingles got on/in my eyes (!!!) and caused
corneal scarring. I've also had shingles on my flank and on the legs.

The best topical treatments, for the insane itching & pain, were vitamin
E oil and straight rubbing alcohol.

Take a vitamin E capsule, pin-prick a hole in the capsule, and then apply
the oil on top of the affected area.
If the itching isn't relieved by the vitamin E oil, then rubbing alcohol
can help. (yes -- it burns like crazy. But if you can stand the
momentary pain, then the itching will be reduced.)

HTH

-- CollCon

[TedTheCat]

On Feb 20, 5:49 pm, "CollCon" <inva...@nospam.net> wrote:
> "TedTheCat" <tedtheca...@aol.com> wrote in message

Thank you, CollCon, I will try it tonight.

Shingles in the eye. Yeoooowww!!!! I can not even imagine what
that must be like.

Thank you also helen anonymous and XX.

And everyone, take good care of yourselves.

[CollCon]

"TedTheCat" <tedth...@aol.com> wrote in message

news:d49e110d-8bd4-44dd...@1g2000yqv.googlegroups.com...

You're welcome -- I hope you find some relief.
The vit E and the rubbing alcohol always helped me. But I have seen
elsewhere a suggestion to use pure lemon juice to deal with the itching --
I would guess that lemon juice might be a little less caustic than the
alcohol.

> Shingles in the eye. Yeoooowww!!!! I can not even imagine what
> that must be like.

It was pretty bad -- the shingles were both in/on the cornea and on my
eye-lid. My eye was swollen shut and part of my forehead was puffy too.
So it was pretty bad, but thank goodness, all bouts of shingles have been
external. I've heard of *Internal* shingles -- That must be terribly
dangerous in addition to being agonizing.

> Thank you also helen anonymous and XX.
>
> And everyone, take good care of yourselves.

You take care, too. And I hope you post back with an update.

-- CollCon

[Donna G]

Seems as though so many have gotten shingles this year! Wonder what is
going on?

I'm curious, as I know many have said they have gotten the shingles
vaccine, but I though you couldn't get the vaccine if you were immuno
compromised at all.

Any of you know whether this is true or not?

.
.
Donna G.
.
.
1) Rejoice always, Pray continually, Give thanks in all circumstances,
For this is God's will for you in Christ Jesus. ( I Thessalonians
5:16-18 NIV )

2) ANGELS EXIST, but some times, since they don't all have wings, we
call them FRIENDS......

3) Just because you're in pain, doesn't mean you have to be one!

[Alice Faber]

In article <805-4F52...@storefull-3171.bay.webtv.net>,

DKGB...@webtv.net (Donna G) wrote:

> Seems as though so many have gotten shingles this year! Wonder what is
> going on?
>
> I'm curious, as I know many have said they have gotten the shingles
> vaccine, but I though you couldn't get the vaccine if you were immuno
> compromised at all.
>
> Any of you know whether this is true or not?

My GP won't give me the vaccine unless my rheumy OKs it, because I'm on
an immunosuppressant. (And this was even after a discussion of whether a
rash I'd had could have been shingles; she agreed that it wasn't, based
on my description of the rash as annoying rather than agonizing.)

--
"Isn't embarrassing to quote something you didn't read and then attack
what it didn't say?"--WG, where else but Usenet

[TedTheCat]

Yeah, I read that the shingles vaccine is a live vaccine and not for us immunosuppressed folks. Better not to chance it.

My shingles is turning out to be a light case. It was like poison ivy for several days and now all that remains is faint rash and just a little light soreness in that side.

I read somewhere one person's opinion that shingles helps RA in the brief run because it gives the immuno system something real to fight and distracts it from eating our joints. Anyway, my RA is in a good period even though I discontinued Methotrexate 2 weeks ago because of the shingles.

Getting my cataracts fixed now too so I win the old fogey trifecta: arthritis, shingles and cataracts all at the same time.

[x x]

10:13PM Evening Donna. I was taught and have read that Shingles was
Dormant Chickn Pox waiting for the resistance to get low enough so it
could make its appearance. This especially so in people that never had
Chciken Pox. most folk that i have seen with Shingles said they never
had Chicken Pox. They only got the most blisters and rash around their
middle areas. from them, i've heard that it is itchy and painful. i had
chicken Pox when i was young, so hopfully there isn't some laying around
dormant waiting to spring on me.
Prayers for those suffering with Shingles. May they clar up dry up ASAP.
Moe

[Donna G]

Glad to hear your case of the shingles has turned out to be a mild case!
That is great! May they clear completely and may you never have
problems with it again!

Best of luck with the cataract surgery too! I have heard so much good
about it. I will be doing that some where down the line too. Have
cataracts in both eyes from all the steroids.

Will you have to stay off the methotrexate for the cataract surgery too?

Please keep us posted as to how you make out and we will be saying some
prayers for a very successful outcome for you!

[Donna G]

Hi Moe! Good to see you popping in!

Unfortunately, most of us have the chicken pox virus laying dormant
within us and we tend to be more suseptible to shingles due to many of
us being so immunocompromised due to the medications we take that
suppress the immune system to help our rheumatoid arthritis, psoriatric
arthritis, and the other auto immune problems so many of us are dealing
with.

I have a friend right now who has shingles on her forehead, face, and
around one of her eyes. Scary stuff too, not to mention quite painful.

I have heard of people getting in on their head/face, their back, their
shoulder area, their abdominal area, etc.

[Donna G]

Nice to see you here, Alice!

I was also told the same thing. No shingles vaccine because of the
immunosuppression. I was curious, though, as it seems that a number of
the people from ASA have gotten the shingles vaccine and I am surprised
by that.

Seems as though with the immunosuppression, though, that so many have
ended up with shingles. Kind of a catch 22 it seems to me!

[Donna G]

BTW, Ted, have you been treating your shingles with an antiviral of any
type, or have you primarily just been letting the shingles run its
course?

[Donna G]

Out of curiosity, when you get the shingles, does the pain that comes
with it start right away as soon as the rash appears?

[Alice Faber]

In article <7785-4F5...@storefull-3171.bay.webtv.net>,

DKGB...@webtv.net (Donna G) wrote:

> Nice to see you here, Alice!
>
> I was also told the same thing. No shingles vaccine because of the
> immunosuppression. I was curious, though, as it seems that a number of
> the people from ASA have gotten the shingles vaccine and I am surprised
> by that.
>
> Seems as though with the immunosuppression, though, that so many have
> ended up with shingles. Kind of a catch 22 it seems to me!
>

What my GP said was that it was because of the Plaq. I'm still going to
ask my RD about it; if I could stop the Plaq for 2 weeks and get the
vaccine, it might be worth it.

[Donna G]

Let me know what you end up doing. I would be very interested to hear
if your doctor will let you do this!

[TedTheCat]

On Sunday, March 4, 2012 12:40:18 PM UTC-6, Donna G wrote:
> Out of curiosity, when you get the shingles, does the pain that comes
> with it start right away as soon as the rash appears?
>
> .
> .
> Donna G.
> .
> .
> 1) Rejoice always, Pray continually, Give thanks in all circumstances,
> For this is God's will for you in Christ Jesus. ( I Thessalonians
> 5:16-18 NIV )

When the Chicken Pox is defeated the virus retreats and hides where peripheral nerves connect to the spine. The spine is like the trunk of a tree and the peripheral nerves are like branches which grow out of it. When the virus returns as shingles the virus follows down the path of the peripheral nerve and so it affects only one side of the body and usually leaves a rash about 4 inches tall

>
> 2) ANGELS EXIST, but some times, since they don't all have wings, we
> call them FRIENDS......
>
> 3) Just because you're in pain, doesn't mean you have to be one!

For most people, the pain starts first and then a rash follows. But I got the rash first, much like poison ivy, and a week after the rash started then I got some tenderness in the side.

Less than 24 hours after the rash appeared I got diagnosed and treatment with the standard shingles med. I threw away the bottle when it became empty and don't remember the name. I read that if shingles is painful then steroids and a NSAID are the first line of treatment for pain and I was taking those anyway for RA.

I was lucky; it was mild, no big deal at all.

But if you develop pain and sensitivity on just one side of the body in a band about 6 inches tall, and certainly if you get a rash there, get to a doctor right away to start treatment. Treatment must start quickly to be effective.

Thank you to all who answered and offered suggestions and/or expressed concern.

[Donna G]

Thanks Ted for the additional information. Much appreciated.

Glad, also, to hear you are improving and hopefully on your way to being
done with those nasty shingles for good!

[Don Kirkman]

On Sun, 4 Mar 2012 13:30:24 -0500, DKGB...@webtv.net (Donna G)
wrote:

>Nice to see you here, Alice!

>I was also told the same thing. No shingles vaccine because of the
>immunosuppression. I was curious, though, as it seems that a number of
>the people from ASA have gotten the shingles vaccine and I am surprised
>by that.
>
>Seems as though with the immunosuppression, though, that so many have
>ended up with shingles. Kind of a catch 22 it seems to me!

Hello, everybody. I used to hang around this group when my wife was
suffering from osteoarthritis that resulted in a shoulder replacement.

Her father suffered long and hard with shingles, and he died (at 97)
without having a cure. I don't mean this to scare anybody, but as a
strong suggestion to do everything possible to get effective treatment
as early as you can.

Good to see the familiar names among the users here. :-)

>1) Rejoice always, Pray continually, Give thanks in all circumstances,
>For this is God's will for you in Christ Jesus. ( I Thessalonians
>5:16-18 NIV )
>
>2) ANGELS EXIST, but some times, since they don't all have wings, we
>call them FRIENDS......
>
>3) Just because you're in pain, doesn't mean you have to be one!

--
Don Kirkman
don...@charter.net

[Harvey]

A very good discussion about shingles. I can only add that there are two
kinds of pain. The bad one is bad enough where I could no longer drive a
car for 3 months. I did meet a man at a shingles clinic that had been on
the bad pain for over a year and his wife had to drive him every where.
Just talking to him brought tears to my eyes. I say all this just to let
you know,,,, what you have could be worse and we need to do everything we
can to control having Shingles....
Harv

"TedTheCat" wrote in message
news:290177.3178.1330915751913.JavaMail.geo-discussion-forums@ynlw24...

[Harvey]

"Don Kirkman" wrote in message
news:u70al7pnf5onpjcrg...@4ax.com...

On Sun, 4 Mar 2012 13:30:24 -0500, DKGB...@webtv.net (Donna G)
wrote:


>Nice to see you here, Alice!

>I was also told the same thing. No shingles vaccine because of the
>immunosuppression. I was curious, though, as it seems that a number of
>the people from ASA have gotten the shingles vaccine and I am surprised
>by that.
>
>Seems as though with the immunosuppression, though, that so many have
>ended up with shingles. Kind of a catch 22 it seems to me!

Hello, everybody. I used to hang around this group when my wife was
suffering from osteoarthritis that resulted in a shoulder replacement.

Her father suffered long and hard with shingles, and he died (at 97)
without having a cure. I don't mean this to scare anybody, but as a
strong suggestion to do everything possible to get effective treatment
as early as you can.

Good to see the familiar names among the users here. :-)

>3) Just because you're in pain, doesn't mean you have to be one!
--
Don Kirkman
don...@charter.net

Well said,,,, Don...
Harv

[Paul T Holland]

h i ted, [and you old timers that would remember me, HOWDEE!]

- I don't look in very often anymore [ you'll know why when you read my
journey],

ted

i'm a still's disease, which is a form of soft tissue RA - and yes, i am
dealing with the shingles for over a year now...

first off - i wasn't supposed to get it because my chart says i never
had chicken pox as a kid - that was back in the late 40's early 50's -
back then if you didn't have the rash/pustules,you didn't have cp - well
of course now they know better - you can have cp without a major
outbreak - ...and...with the still's, you get rashes every time you have
a flare - so clearly i 'must' have had it - but it just wasn't observed.

anyway, first week of feb. 2011 i broke out is a gorgeous rash on left
side, from collar bone to about two inches below ribs, all the way
around the left side to the spine all i one day - doc saw me the next
day and immed. put on valtrex [Valacyclovir] for 10 day treatment to try
to dampen it down -

didn't work - rash turned to blisters, blisters turned to blood blisters
and over about a weeks time they joined until it looked like i was
wearing a vest on that side.

all they could do was dope me up until i was practically drooling to
make it bearable at all - that stage lasted for more than 6 weeks, could
bear to have any clothing touch it,

and basically just sat around - couldn't lay down, so slept by having a
pillow on the dining room table and leaned into it - until it finally
started to abate and the blisters began to dry.-

and then, the the real pain started.

as the blisters dried out, 'post herpatic neuralgia' began to ramp up.
3 root nerves from about T7/8 were damaged. one branch is on my back
roughly in the shape of a question makr, one comes around the side and
goes up to my armpit, the other comes around front and covers left side
of chest - and it burns.

to say it feels like i am being flayed does not completely describe it.

could not stand to have any clothing on it, any cold draft was
unbearable, running water like a shower made it worse, lifting left arm
put tension on it, blah - blah -blah - essentially, couldn't do anything.

I could walk around, and sit leaning forward. beat my head against the
wall.

7 1/2 and up on a 10 scale

the process of getting the pain under control is an ongoing journey -
but now, 14 months later, i'm currrently using daily

1200mg of lyrica,

1200 mg of nucynta [artifical opioid]

a bunch of otc vit's to counter systemic stress,

at night 3 lidoderm patches - front,side, back - can only wear them for
a max of 12 hours, so use 'em at night,

also during daytime a custom compounded cream called ADKAL which is:
[acyclover,deoxy-d-glucose,ketoprofen,amitriptyline hcl,lidocaine]
I have a mail order pharm that makes it up once amonth

oh - and i've had two spinal blocks that helped a tad - maybe one point
on the scale...i'll take it...the nerve on the back was helped more than
the other two, enough that i can lean back if i don't move around.

with meds, it's a 4 to 5 on the scale

now with the above,i can stand to wear a shirt most days, drive myself
around [being very careful - some days i can't do it.]

Now i can sleep in an easy chair - that keeps me from rolling over and
putting pressure on side and front.

it hasn't gone away - but with meds, it is tamped down to a point where
I can function - if at a reduced level - fatigue is a major factor

not to mention that i still have the ocassional still's outbreak and
with that i have costo in the ribs - so that puts pressure 'upwards' on
the same nerves that the shingles neuralgia have damamged. more drugs
then. then it's just put me out.

and i still have to take my still's meds on top of all the other.

All my pain clinic docs can tell me is that there is good percentage of
folks where it evertually subsides...but how long...no guesses.

they 'think' that the auto immune thing isn't helping the shengles
damage heal

at my pcp, there are over a dozen seniors that have it to some degree,
and at the pain clinic [where the more serious ones get sent] over 20 of
us. all in different locations, but all with the nerve damage and
excitation that hasn't subsided.

the thing i would most enjoy at this point wuold just to be able to have
a full nights rest, in bed...without it jerking me awake if i move.

If you can, GET THE SHOT, 'cause you really, really, really do not want
to have any part of this thing. Not many to this degree, but DO NOT TAKE
THE CHANCE

ah well tis what it is - tomm is another day i shall get up and go at it
again

this is longer than i inteneded and i'm pooped so tah -

i'll try to look in again when energy permits

To the names I know that are still posting, i'll try to touch base with
you , but not today...

paul

[Donna G]

OMG Paul! That sounds like such a major nightmare! I can't even begin
to imagine!

I'm so sorry you have to contend with all of this.

Can they do individual nerve blocks or anything?

Also, at some point, will you be able to get the shingles vaccine? I
ask, because I know you can get shingles more then once and lord have
mercy, I would hate to think of you getting this again!

Praying, praying, praying that this will all ease up considerably and
then go away and for this to happen SOON!

14 months of this is more than enough to have to live with! I imagine
this takes a toll on your loved ones as well having to see you go
through this!

Good to see your name on the boards, though!

.
.
Donna G.
.
.
1) Rejoice always, Pray continually, Give thanks in all circumstances,
For this is God's will for you in Christ Jesus. ( I Thessalonians
5:16-18 NIV )

2) ANGELS EXIST, but some times, since they don't all have wings, we
call them FRIENDS......

[Harvey]

I have to admit that you have it worse than I did. I wish you lived in
Houston where research is bing done in a clinic here. I tried to get in
the program but you can't get in if you take
prednisone. I did meet a man there like you that had major pain over a
year. The nerve damage does not go away. I hope you find peace and
things get better for you. I have said a prayer that things improve. The
truth of it is that todays medicine does not know enough about this and how
to treat it. Like Donna said,,,, it is good to see you on the board
again.
Harv



"Paul T Holland" wrote in message news:jnq1s8$6bv$2...@dont-email.me...

[Donna G]

[TedTheCat]

On Friday, February 17, 2012 6:12:14 PM UTC-6, TedTheCat wrote:
> So, the standard warning for biologics is to report to the rheumy if a
> rash develops. Do it! The rash could be shingles, a disease which
> especially likes immuno-compromised folks like us, and a disease whose
> severity and length can be lessened if treatment is started
> promptly.
>
> I got it.
>
> Has anyone before me gotten shingles on top of RA? Any and all
> comments or stories are welcome.

On Friday, February 17, 2012 6:12:14 PM UTC-6, TedTheCat wrote:
> So, the standard warning for biologics is to report to the rheumy if a
> rash develops. Do it! The rash could be shingles, a disease which
> especially likes immuno-compromised folks like us, and a disease whose
> severity and length can be lessened if treatment is started
> promptly.
>
> I got it.
>
> Has anyone before me gotten shingles on top of RA? Any and all
> comments or stories are welcome.

WOW! That is terrible. And you have had it for longer than a year now.

Thank you for sharing your experience and sincere hopes for speedy relief.

[Donna G]

Hey Paul, when you feel up to popping in again, am wondering how Susie
is doing, too!