Re: Rough time

[Guest guest]

Stacey,

I'm really concerned about you. I saw your most recent post, too, about

not being able to sleep again. And, although I've never seen Animal

Planet, I certainly know how wild the sleep-deprived mind can be.

Have you told your doctors how much trouble sleeping you are having and

leveled with them about all the pain and flares? I know you must be

telling them something since you have been in contact with them and are

switching meds, but you have been going an awfully long time without any

kind of substantial relief.

What's the chance you could start the Remicade very soon?

Sorry to hear about your root canal. Unfortunately, I can relate to that

situation all too well.

[ ] Rough time

> Hi All,

> Been having a rough time for a while now. Can't seem to find a new

coctail

> that works. Still waiting for the Prosorba Columb and my rheumy wants

me to

> start Remicade for the time being. I went to the dentist on Wed and I

need a

> root canal. I have to take antibiotics because there is slight

infection.

> Erythromycin. Also, the Vicodin has lost its effectiveness, so here

we go on

> another search. In the past 2 weeks I have tried Indocin, which made

me so

> nauseated that I just couldn't stand up, and Disalcid, which gave me

terrible

> stomach pains. I called the rheumy today and let him know about this

> wonderful side and am still waiting for an answer. Wyatt left

yesterday with

> his aunt and uncle and their kids to go camping up in the mountains

and

> called this morning to say that he wanted to come home. So I drove an

hour

> and a half to get him and then all the way home. My fingers are so

sore from

> driving. I am feeling very frustrated. On top of this my ankles,

feet, and

> legs are still swelling so my PCP upped the HCTZ to 25 mg per day.

Every

> joint hurts and the pain meds are making me sick. So now what? We

went to

> our family reunion on Sunday and of course I woke up all flared up. I

had a

> good time anyway, in spite of the RA. Oh yeah, I almost forgot, my

period

> started right in the middle of the bingo game at the reunion. I did

get to

> see some of the family from NYC and Virginia. My cousin's wife, in

VA, also

> has RA. So we sat and talked for a good while. I told her about the

group

> so she may be lurking somewhere. Two days after the reunion, my neice

called

> me. She was staying at a cousin's and they wrecked on the quad

runner. She

> was pretty banged up and wanted to come home. So I went on a rescue

mission

> to get her. Only about 45 minute drive. Thank goodness she's ok.

Scraped

> and bruised. She lives with my parents and she and I are very close.

My

> sister dropped her off when she was 2years old and she's been there

ever

> since. She is now 12. She is almost like my second child. But

that's

> another story. Anyway, its been a rough couple of months and I'm just

trying

> to keep my head about me at this point. Next week is going to be

hectic

> also. We have tickets to a Pirates game on Wed, Kennywood park on

Thurs,

> and Idlewild park (reunion) on Sunday. I explained to Wyatt that I

don't

> think we'll make it to Kennywood and he is pretty disappointed, but

I'm sure

> he'll get over it. Idlewild is more for small children and families

anyway.

> (Please help me to survive the summer.) Where are those pain meds?

LOL

> Love and Hugs

> Stacey in PA

[Guest guest]

Hi Carolyn,

I'm sorry to hear of the hard time you've been having with the meds.

It's so important to 1) Find a great doctor; 2) get a proper diagnosis;

and 3) find the right cocktail of meds to keep your disease activity to

a minimum. It sounds like you have a diagnosis, you just need a rheumy

who will listen to you and work to find a balance between controlling

disease activity and side effects. I pray you're able to find the right

doctor soon.

Living with RA can be unbelievably hard at times, and I too marvel at

the strength of these people I call my friends. I'm just so grateful

for the support this group offers. Please feel free to vent, share or

just join in anytime. That's what we're here for.

Love and hugs,

Carol

[ ] Rough time

Hi all,

It has been since about Nov. since I posted. I have read every post

since then and am getting to know everyone better.

a and the WORK you do to keep everyone informed is amazing.

a and the compassion you extend to everyone is so

comforting. a and , you are a blessing!!

Tess, Kathe, Kathy, Iris, Diane, Debs, and this list could go on and

on ---- it is wonderful to learn about each of you and share your

joys and pain. Just to hit a few of the major highlights, I am so

pleased that Debs is " out of the hole " and that Tess is " over the

hump " ,and Heide is starting a tummy. Still many bridges to cross

for so many..............

I have only endured this curse for a short time and at times have

thought I couldn't continue even trying. My Rheumatologist has not

been supportive and still doesn't have me under any control. In

fact, I have just had severe allergic rxn and am off all meds except

Medrol pac and Periactin for the itching. I have been so sick for

the last 6 months I really could hardly function. I thought it was

the RA's normal course but realize after the reaction Tuesday night

that the majority of the problems were probably meds related --

complaints that if the Rheumy would have just listened, might have

been prevented. I finally got into my Internal Med physician and

she realized the allergic rxn and seems to think the hives, chest

pain, shortness of breath, etc.were from the celebrex. She put me

on medrol pack and Periactin for the itching. Took the Periactin

tonight and severe chest pain, high BP, pulse 98, extreme " acid

reflux " type pain. So I now know which med is the culprit for those

symptoms. Guess the celebrex was the rash and hives.

But...............am on prednisone high (learned this from you guys)

and so very glad that at least all the other side effects from the

mtx and celebrex are over and now know the Periactin is the other

bad guy. Just took milk of magnesia to try and get the system

cleared from the Periactin. It has been a long, painful, and scary

6 months. I have prayed many times each day for the strength to

live with this THING and waited patiently for some relief, only to

get so much worse. I am just so very thankful to be alive tonight!!

I am a dentist, 58 years old, retired, divorced, two children. I

had a very active life, taught at the dental school half time and

practiced half time. Only regret that I couldn't make my marriage

work. But he went to law school after we were married, found a

whole new world of playthings, and went on his way. I have found

peace, dumped the anger, and am so thankful for who I am. I live on

a small farm and loved the physical activity of working outside

after I retired -- all kinds of flowers, veggie garden, few cows,

chickens, geese and kept things pretty nice without much help. Love

to sew, embroidery, create in the cold months (and boy is it cold

now -- don't like it). All my activity ceased in August, and am

having a terrible time walking -- feet so bad, hands moderate, but

just about every joint affected. Since the mtx and celebrex had

severe GI problems that has kept me from going anywhere unless I

didn't eat the day before I needed to get out and still worried

about incontinence if out. Nausea always followed mtx. Diarrhea

four days after--usually total water. Rash and itching on feet,

hands and scalp off an on all the time. Pain on urination. Severe

indigestion, hiatal hernia area. After taking the Periactin for the

itching had severe chest pain, still had itching at times more

severe, asthmatic bronchitis and on albuterol and flovent for that.

It just seemed like I was headed for my meeting with my maker.

Really thought there had to be a miracle for me to want to go on.

So maybe my miracle has come--getting off all the meds. Just know I

still have a battle finding what will stop this RA and not kill me.

Is there any quality of life after RA?? Even though I have studied

medicine, treated many patients with RA, Lupus, cancer, etc. and

fell in love with so many of them, I did not know the daily trials

they endured. The shoe is on the other foot and I am having a hard

time with the fit.

So..........getting to know this group has been a huge BLESSING. I

have learned some of what I can expect. The trouble so far was that

I couldn't believe you all lived through all that I was experiencing

and made it. I can hardly walk now but God willing I will be once

I get a new Rheumatologist that can listen and not kill me.

God Bless Each of You

Carolyn in KY