new rheumy

[Guest guest]

Hi Sinead, Good news about your new rheumy!! Take care, Lorraine

[Guest guest]

Yay! That's great news Sinead. I wish my best to your budding family. Keep

us updated on your progress.

deano

> From: " Sinead Waters " <almostturner@...>

> Reply-

> Date: Thu, 12 Jul 2001 15:12:29 -0400

>

> Subject: [ ] New Rheumy

>

> Hello all. I had my first appointment today with my new rheumy (who is a

> teaching fellow at Duke University Med. School). It turned out great!!

[Guest guest]

,

I am so glad that you like your new rheumy and the new clinic. I wish the news

would have been better with your labs. We will pray that this doctor will be

agressive for you and able to get things under control.? Think positive and stay

strong. How is school going for you? When I drive by the school and see the

little ones going in I think about you and your new classroom full of kids.?

Keep us informed how it goes with Humira when you get started on it. Do you

know?when you will start? We will be praying for you.

Veri & Jaye 15 poly

New rheumy

I had my appointment with my new rhuemy and I like her and the clinic a lot. The

news however was not good. My sed rate and c-reactive protein are extremely

elevated despite being on prednisone and Imuran. She said that she doesn't feel

comfortable upping my dose and that she believes I need to start Humira as soon

as possible. I feel heartbroken that nothing ever seems to work but after a long

cry with my sister I am feeling better about this. Maybe me having to get a new

rheumy has lead me to finding a doctor who will actually be able to treat and

possibly cure this disease for me. I am trying to stay positive and just let go

of my apprehension but sometimes its hard..seventeen years later I,m just ready

to be done with this disease.

Love,

(mctd, 24)

Sent via BlackBerry by AT & T

[Guest guest]

Sorry to hear about the elevated rates but glad you liked the rheumy. We

were worried too about joe needing a new one but so far we are happy with him

and he switched her to Humira too. Go to their web site and sign up for their

prescription card. She is just needing to fill it and the pharmacy closed early

tonight so I can't tell you what kind of help they give but everything helps.

She has the kind that has the preloaded syringes--she said it was much harder

than she thought it would be the first time. She has gone through all the meds

and Enbrel and Remicaid so we understand how you feel!!! She is still on MTX,

Pred, Celebrex etc too. Good luck!! I hope this is the drug for you and for joe

too!!

e

From: lsalvucci42@... <lsalvucci42@...>

Subject: New rheumy

Date: Tuesday, September 29, 2009, 6:22 PM

 

I had my appointment with my new rhuemy and I like her and the

clinic a lot. The news however was not good. My sed rate and c-reactive protein

are extremely elevated despite being on prednisone and Imuran. She said that she

doesn't feel comfortable upping my dose and that she believes I need to start

Humira as soon as possible. I feel heartbroken that nothing ever seems to work

but after a long cry with my sister I am feeling better about this. Maybe me

having to get a new rheumy has lead me to finding a doctor who will actually be

able to treat and possibly cure this disease for me. I am trying to stay

positive and just let go of my apprehension but sometimes its hard..seventeen

years later I,m just ready to be done with this disease.

Love,

(mctd, 24)

Sent via BlackBerry by AT & T

[Guest guest]

, I'll be praying for you that Humira is the answer. Bless your heart, I

know you are discouraged but I know your amazing strength will carry you thru.

Godspeed.

and Rob 20 JAS

New rheumy

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> Date: Tuesday, September 29, 2009, 6:22 PM

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> I had my appointment with my new rhuemy and I like her and

the clinic a lot. The news however was not good. My sed rate and c-reactive

protein are extremely elevated despite being on prednisone and Imuran. She said

that she doesn't feel comfortable upping my dose and that she believes I need to

start Humira as soon as possible. I feel heartbroken that nothing ever seems to

work but after a long cry with my sister I am feeling better about this. Maybe

me having to get a new rheumy has lead me to finding a doctor who will actually

be able to treat and possibly cure this disease for me. I am trying to stay

positive and just let go of my apprehension but sometimes its hard..seventeen

years later I,m just ready to be done with this disease.

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> Love,

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> (mctd, 24)

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> Sent via BlackBerry by AT & T

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[Guest guest]

Sue: I'd be interested in what blood tests he's taking that he thinks will tell

him definitively whether you have it. Unless you are one of the few who have

the HLA marker for PsA, I can't imagine what he's looking for.

Joanna Hoelscher

[Guest guest]

i think it was the marker with the number 27 in, i think that is the HLA blood

test. so now i am so confused as to what is wrong with me, i just don't know who

to trust anymore.

Sue Kaminsky <skaykam48@...>

[Guest guest]

i forgot that the my first rheumy said i had sausage thumbs and swollen joints

which he was treating with a cortisone shot. now this new one says no

swollen joints or sausage digits. i always said they will find out what was

wrong with me when they do the autopsy!

Sue Kaminsky <skaykam48@...>

[Guest guest]

Thats how I feel too. One md told me in 2005 I had Fibro now my Rheumy says no

Fibro its PA, someone slap me.

lori sandolo <antlo2003@...>

[Guest guest]

I would find a new practice altogether. Those MD's sound like they all have head

issues. You know how you feel, don't stop until you find an MD who will listen

to you and work with you to find out exactly what is going on. Being overweight

will make your pain worse but it should not effect results of blood tests to

check for arthritic inflammation. lori

[Guest guest]

As far as diagnosis goes, I started about in 2005, same as you. Went to my

first rheumatologist, who ran

Every test under the sun, then sat me down. He said you have psoriatic

arthritis and seronegative spondylitis.

At that time, I wasn¹t having as much larger join pain, just read, puffy,

painful hands and extreme fatigue.

So, I thought he was a little off his rocker...

So, I went to another rheumatologist, who is younger, has a hip office, and

a great demeanor and office staff.

He was so nice and would listen to me, give me pain medications, refer me to

a physical therapist, etc.

He kept saying fibromyalgia and a herniated disc in my back. He even sent me

to two other doctors for second opinion, who did

No testing or scans, and concluded with fibromyalgia. Oh, and the loads of

antidepressants and sleeping medication!!

Now ­ 2 years later, it has progressed incredibly, info my eyes, spine, SI

joint, hips, sternum and ribs. I can no longer twist at the waist and am on

significant pain medication to be able to function.

Recently, I went back to the gruff, 75 year old rheumatologist, who I

initially went to. He did some x-rays, scans, etc., and showed me the damage

to some of my joints, SI joints, and the inflammation up my spine. He is

starting me on Remicade next week.

We are hoping that the spondylitis from the PA doesn¹t turn into ankylosing

spondylitis.

He was right ­ he just saw the disease before it had progressed to the point

of disability. If I had listened to him, I might have been able to keep

this at a much milder level. I know fibromyalgia is a legitimate disease,

but I also think it is a catch all for some things, before they are

symptomatic to qualify the diagnostic criteria for something.

I found this video this weekend on youtube from the spondylitis association

website, that I think talks about this perfectly.

http://www.youtube.com/user/SPONDYLITISdotORG#p/a/u/0/9Sv6cUxNuwM

One other thing ­ As a thyroid cancer survivor, I strongly recommend that

anyone with any autoimmune disease, get your thyroid tested, especially for

the antibodies that cause thyroiditis. Having a thyroid out of wack, can

really make you feel awful also.

[Guest guest]

I must say that I, too, am reluctant to try any of those biologics for my own

reasons. I did, though, take my first dose of methotrexate on Saturday night. I

was very nervous and have had the pill bottle sitting in my cupboard since

September 22nd. I am happy to say that almost 48 hours later, I have had none of

the side effects that most people have. My right eye had started going blurry 2

weeks ago, which is when I decided to start the MTX. I am also happy to say that

my right eye is back to normal 24 hours after taking the MTX.

My rheumy has told me that he will not prescribe anything stronger than NSAIDs

for pain, not even Tramadol. I find this weird, because I was reading a pamphlet

for Ultram(Tramadol) in the waiting room of his clinic during one of my last

visits. He stated the reason as being that people with RA, PsA, and the like do

not experience any relief from their chronic pain with med's such as Ultram,

Vicoden, Percocet, etc. Is this true for any of you? I can say that it doesn't

seem to be true for me. Weeks ago, a friend of mine took pity on me and offered

me a Vicoden he had left over from a recent injury. I took it when my lower back

was intensely sore that night and I noticed a marked decrease in pain and

stiffness. I wouldn't want to take it every day, but it would be nice to have

something that would

work for the bad days. Tylenol, naproxen, Celebrex, piroxicam, prednisone, and

Limbrel have had no effect. My rheumy gave me Indocin the other day, which

seemed to help a little, but not much.

If anyone else disagrees with my rheumy on this subject, then I believe it is

time for me to shop around for a new rheumy as well.

All input is appreciated and I hope everyone finds a doctor that will listen to

them thoroughly and takes their concerns into account.

Have a great day everyone!

- L.

[Guest guest]

My internist and/or rheumy have prescribed both tramadol and Tylenol with

codeine for my pain but in all honesty, I can't say that either of them helps.

I have ulcerative colitis and so cannot take NSAIDs but when I could, they

helped more than either of the stronger narcotic type meds. (Tramadol is a

synthetic opiate so the belief is that it's not as addictive as the other

pain-killers.)

Joanna Hoelscher

[Guest guest]

,

I have a prescription for Tramadol and it does nothing for me. I take

it occasionally at night (because the pain is always so bad when I'm

trying to sleep), but I rarely notice any difference.

I took my first Enbrel shot last Thursday. Have had problems with

headaches and a wee bit of nausea. The nausea passed quickly, but

man. . .the headache on Saturday was unbelievable. Any other Enbrel

users have headaches?

Janice Hanna

[Guest guest]

Before my Humira and MTX kicked in, I was in so much pain that I wondered about

my quality of life...seriously. I wasn't able to sleep and barely able to

function during the day. Prescription anti-inflammatories did not work.

However, now, the Mobic works fine for pain control. I still feel the stiffness

and pain, but it is bearable.

Hope this helps!

Dena

www.arthritisBAM.blogspot.com

[Guest guest]

Joanna,

Have the Docs ever said that you have Paledromic arthritis? Its

like PsA, and or RA, but it has a half life.

[Guest guest]

Here, here....

I completely disagree with your rheumy about your pain. It sounds like he

must be very familiar with addiction or is paranoid about his patients

developing addiction. While, I appreciate his wariness, he should refer you

to a very reputable and good pain management doctor. You are right,

Tramadol, Ultram did NOTHING for me. I think they are very helpful for

fibromyalgia.

I see a pain management doctor every 6 weeks. It took some time to adjust

things, but he is pretty brilliant. The misunderstanding about pain

management doctors is that they just shuffle out narcotics. They want you

to be as high functioning as possible.

For me, this means getting a good night sleep, so I take a mild sleeping

pill, Lunesta.

Autoimmune stuff, especially inflammatory arthritis makes you completely

exhausted, like you can¹t get out of bed in the morning and that 3:00 pm

crash where you can¹t get out of a chair. He prescribed me something called

Provigil that has been a lifesaver. It is a very new drug, and no, it is

not speed. He also looks at prescribing the right antidepressant

medication, for two reasons.

One, if you are in chronic pain, of course that is depressing, but, also,

brain chemistry is a tricky thing. By suppressing or adjusting some brain

chemistry, your brain will actually perceive the pain less. Usually this

helps a pain medication work better so that you do not become tolerant too

quickly, also. Lastly, currently I am on Opana ER, on the lowest dose,

which I take every 12 hours. It is not perfect, but it is the best I have

found so far.

I did take hydrocodone before, but I really don¹t need anything that might

affect my liver, and it has acetametaphin in it.

I hope I haven¹t rambled. I appreciate the caution by your rheumy, but just

make sure he is not a sadist. If he is just precautionary, he will refer

you to a pain management MD, if a sadist ----- find another doctor. That is

no way to live, this illness is hard enough, plus, if you come out of a

flare, or have a remission, you can go down or off you pain medication.

K

[Guest guest]

i never heard of that arthritis, thanks.

________________________________

From: <mary@...>

Subject: Re: [ ] Re: new rheumy

Have the Docs ever said that you have Palendromic arthritis? Its

like PsA, and or RA, but it has a half life.

[Guest guest]

K, I totally agree to seek out a pain specialist for chronic pain that has been

unresponsive to other therapies. I am just concerned for the people who are

asking for pain meds without getting their disease under control. (see my

previous post) Sounds like you have had good luck with you pain specialist.

[Guest guest]

I would like to thank you all for your input. After reading all replies, I have

decided to go get a second opinion(hopefully resulting in a change of

rheumatologist). My rheumy said he will not

refer me to a pain management specialist and that I must go back to my primary

care doctor to get a referral for one.

To , I do not want to take narcotics every day on a strict regimen, I only

want to have something available for the times where I cannot get out of bed,

can't do anything because of the pain. I agree that there is no place for

chemical dependency in our lives. I have seen what addiction to drugs has done

to people, which is why I don't visit or talk to my mother anymore. I am

currently trying MTX,

but it takes a while to see results from most of these drugs, it would be nice

to have some help getting to that point is all I am saying. Thanks again for all

input given.

- L.

[Guest guest]

,

Sorry to jump into this discussion late..but my life has been a bit crazy. 

There is a BIG difference between drug seeking behavior and using the drugs to

control your pain.  I understand your hesitance to take narcotics on a regular

basis..but they, and most other pain medicines, work a LOT better if your take

it before your pain winds up.  This is why many doctors tell you to take the

medicine every so many hours..and not wait for your pain to build up. If I let

my pain build up...it takes many doses( spaced appropriately)  to get it settled

back down. There is a biochemical explanation of this that I will spare you! But

as a vet I can tell you animals have the same problem: Treat their pain

regularly...you can control it..wait for it to build up and you have problems.

 I think you are making a good decision to seek a second opinion.  I hope you

find a doctor you like and trust as it makes a BIG difference in your recovery.

Hang in there..things will get better.  Becca

[Guest guest]

Thank you, Becca. I appreciate your input, too, no matter how late it came.

I am calling today to cancel my follow-up with my rheumy and will be

searching for a new one today as well.

- L.

-

[Guest guest]

Hi ya all,

Wow what a day. I felt like a newbie. As you all know (or maybe you don't

).I have been having some problems because I stopped Minocin last summer.

Started in my rotator cuffs after hubby and I put a kitchen in.

I have been doing physical therapy for 2 months and am back on Mnocin.

About a month into physical therapy my right ankle swelled and I could

barely walk on it. I started pt for that also and started oral Clindy (if

you are interested my story is on histories page). Two weeks of therapy,

minocin and clindy and all seemed good. My left middle knuckle had been

swelling on and off during this time and now mostly off. I never had this

kind of swelling in the past. My metatarsal of the right thumb also was

painful and swelled after I started back on the Miocin. I also had a

rheumatoid factor done which has been negative since 2000(I think) and

negative sed rate since then. RF was now 95 but the sed rate was only 2 but

CRP was 4.6. I have not seen a rheumatologist since 2001. The one who I saw

only for " just in case " was no longer in practice. My natural doctor

prescribed my minocin and clindy.

My primary care (who I go to because insurance pays and he orders ultram)

suggested one. I should know better! I had that appointment today.

She came in the room.did not smile.did not introduce herself or even try to

be pleasant. OMGoodness I can pick em! Said flatly .what do you want? I

proceeded to tell her I was on antibiotics .she interrupted me.. " If you

think I am going to order antibiotics for you, I will not because they are

an outdated way to treat rheumatoid arthritis! I got a LITTLE .oh how do I

put this?.... pis-d off. I said. I have a REAL doctor that orders my

antibiotics and it is not outdated. Rheumys do not want to prescribe this

because they would be out of a job. That settled her down nicely..I also

stated I only wanted her to order needed tests and xrays and be there just

in case but if that was not agreeable I would leave .right now.

AMAZINGLY.she then asked what kind of problems I was having. She never

smiled and was totally flat in expression. It was the usual exam.

When I was leaving I gave her a copy of my story as well as info on

antibiotics and asked her to please read them. She then proceeded to say

" for your info.there are new drugs that help immensely and I studied how to

use them and not to just get a paycheck " ! I reined myself in and just left.

I will be looking for someone else more personable. I don't need anyone for

antibiotics at this time. I will let you know how the tests and x-rays

turned out. Thanks for listening just had to get this out.

cooky

[Guest guest]

sorry to hear it cooky. i had one of those as my 1st rheumy. nasty ppl

they are. the one i have now gives me an rx for abx even though he'd

rather give me a biologic. at least he respects my choice. good luck

finding a new one.

monique

[Guest guest]

Yep they are nasty but God will even it out!

cooky

From: rheumatic [mailto:rheumatic ] On Behalf

Of Sauve

Sent: Wednesday, June 30, 2010 2:04 PM

rheumatic

Subject: rheumatic Re:new rheumy

sorry to hear it cooky. i had one of those as my 1st rheumy. nasty ppl

they are. the one i have now gives me an rx for abx even though he'd

rather give me a biologic. at least he respects my choice. good luck

finding a new one.

monique