Temporal arteritis/giant cell

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downupside
Regular Member


Date Joined Dec 2006
Total Posts : 20
   Posted 12/25/2006 9:21 PM (GMT -7)   
about 2 months ago, after suffering from extreme hypothermia, and subsequently thawing out....hmm, I noticed some odd things happening.  My hips started aching, my right temple was throbbing all the time, my right eyeball felt like there was something in it all the time, and it was swollen feeling.  My arms ached, my at times they felt numb, and tingly.  My legs felt like rubber, and I was exausted.  I decided to take those complaints (along with others that I was experiencing) to the doctor.  But, not before I armed myself with a little bit of knowledge. 
 
While firing off my list of owies to the doctor, I watched her reaction.  Nothing.
She didin't even write most of them down.  Finally, when I was finished, she said "is your breath bad?, can you sleep?, Do you have depression?, Do you still enjoy doing the things you used to do?, etc....."  I replied with a "yes" to each question.  She asked if I was on anti-depressents.  I said No, and the depression is not something I need meds for, I'm depressed because everything hurts.
 
The doctor is young.  This I thought was a good thing, you know right out of school, all the newest medicine, diseases, gung ho, excited....   I think however, she was just plain overwhelmed by all my aches and pains.
 
I mentioned to the doctor that my hair was falling out.  She looked at my scalp and asked if this was normal.  NORMAL????  What's normal about patches of hair falling out?  My bathroom floor now has more hair than I do.  She had a diagnosis....stress.
 
Alrighty then, it's time to drop the ball and tell her what my symptoms may mean.  I didn't tell her I'd been on the internet, or spoken with an opthomologist friend, and that i may have an answer.  I wanted her to figure it out, and take all the credit.
 
I mentioned, temporal arteritis, otherwise known as giant cell disease.  TA/ GC has a direct correlation to polymyalgia rheumatica, which is an inflammatory rheumatic condition.  That would account to the pain in my hips.
 
Temporal arteritis was causing vision loss in my right eye by this time.  I wasn't leaving the docs office without an answer, and medication.  My worst fear was going blind.
 
But, of course, I played by the rules and waited for the doc. to make the diagnosis.  Still, she hemmed and hawed, and said "well, sounds like you've done some reading."  Then she said, "I still don't see how the pain in your hips has anything to do with your headache, unless you have an auto-immune disease, which I am certain you don't".
 
What?  Auto immune disease?  You mean like Lupus? 
All of a sudden, I'm on a mission.  I need to get home, get back on the internet and read all I can about Lupus.  The doctor then says to me "I'll put you on 20mg. prednisone for 30 days.  If your symptoms don't subside within 24-48 hrs. call me, and we'll take you off of it."  She explained that prednisone would handle the pain in my temple and eye, and the aches in the hips, etc. if that was truly what I was experiencing.
 
I then asked her what kind of tests she'll be running.  She said a complete CBC, rheumatoid factor, double stranded DNA antibody, ANA, ESR (sed rate), and lipid panel.
 
That was a week ago today.  The prednisone is working.  The temporal headache is gone, the eyeball swelling has subsided, my vision is back to almost normal, the pain in my hips is 75% better some days.  The side effects of the prednisone are not good.  I'm lethargic, feel sad, my whole head feels like it is in a vice grip 12 hrs. a day, I'm no fun to be around.  Not even my chihuahua likes me right now. 
 
The CBC shows anemia (duh, I'm a 51 year old female that weighs only 109lbs, and 5'6", due to another of my symptons, rapid weight loss).  All the rest of the labs show within normal, but either low or high range, indicating something going on....
 
I haven't head a peep from the doc regarding the test to determine the liklihood I have lupus.  I guess she went on holiday.....oh well....
 
Any other Giant cell sufferers out there that may have lupus?  Or, vice versa. 
 
 
 

elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 12/27/2006 8:36 AM (GMT -7)   

One question--how could this doctor tell you that you definitively did NOT have autoimmune disease, when she hadn't yet tested you for it?  Did she come up a with dx (or lack thereof) before you walked into her office?  It sounds to me that you should be going to a rheumy, not a primary.  Get a referral to one, if your insurance requires it, since they would be the specialists who treat TA/GC anyway.  Don't know much about TA/GC, but your experience doesn't sound like a lot of fun.

El


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


downupside
Regular Member


Date Joined Dec 2006
Total Posts : 20
   Posted 12/27/2006 2:58 PM (GMT -7)   

Thanks for your comments Elcamino.

I'm not too happy with the treatment the doctor has given me.  My tests for lupus, according to the doctor, and she did not elaborate, nor did she give me any reference range or value over the phone, therefore I don't know specifically what "normal" was.  She told me "you do not have lupus, and you do not have Temporal arteritis, so you don't need to take the prednisone anymore".

I questioned her about the results of my blood work, sed rate, cbc, rbw, wbc, etc.  Anemia was flagged as below the normal range, however my sed rate was normal.  She said she didn't see anything in these tests that indicated lupus or temporal arteritis.  I, of course, have continued my research on this, and have come up with some other facts.  A normal sed rate does not rule out temporal arteritis, or lupus. In fact, a normal sed rate will often accompany these diseases in their early stage, making lupus difficult to diagnose.  I do have many of the symptons.  I am anemic, hair is falling out, aching joints and swollen hands, hip pain, gout in my big toe, kidney stones and infections, runny nose, canker sores in mouth and nose, occassional butterfly rash across cheeks, but not always (usually when exposed to heat), lethargy, gastrointestional (chrones-like symptons)  flu like aching in arms and legs.  And, thats just for the lupus symptons. 

For the Temporal arteritis, my symptons are right on.  pain in temple, eyeball swelling and pain, slight loss of vision (I could go blind if not treated), jaw pain, stiff jaw, and for the polymyalgia rheumatica which goes along with it, pain in my hips, neck, and shoulders.

The prednisone helps dramatically, and when I told the dr. this, she said she'd send me to opthomology and they would consult with me whether they should do a biopsy of the temporal artery.  I thought that would be a given!

I went off the prednisone yesterday, by late last night my temple ached, my eyeball was beginning to swell, my hips hurts, stiff jaw, and I had aching in my legs.  So, at midnight, I took a pred. along with a sleeping pill and pain killer.  I awoke this morning feeling horrible, but the pain was gone, except for the aching in my legs.

I'm about to search for another doctor.!


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 12/28/2006 9:28 AM (GMT -7)   
one thing i want to add...if the prednisone is helping? that sorta should tell the doc that something inflammatory is going on.
in all...i feel your frustration, went through it too in the begining.
please, do seek another physician....perhaps a seasoned one!
take good care.
Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures. MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions Q3 weeks; Intra-articular knee injections; Imuran; Mesalamine; Prednisone tapering from 120mg; Meclizine; Reglan; LidoDerm; Diazepam; Restaril; Dilaudid; Avinza and too many others. 


downupside
Regular Member


Date Joined Dec 2006
Total Posts : 20
   Posted 12/28/2006 5:05 PM (GMT -7)   

Yes Erin, you are right about the meds. helping and that should be a clue to the doc. 

The prednisone makes me feel so depressed.  I cry all the time, and the fact that my doctor is sluffing me off, really doesn't help.

Tomorrow I see the Opthomologist, maybe I can find some answers there?????


Savvy63
Regular Member


Date Joined Nov 2006
Total Posts : 450
   Posted 12/28/2006 6:14 PM (GMT -7)   
{{{{{{{{{{{downsideup}}}}}}}}}}}}}}
I am listing symptoms/test results cuz my Dr is still trying to figure out exactly what's going on with me. If any of this rings a bell with you, email me at daisyhen at msn dot com.
 
DDD- MRI confirmed
Arthritis-xray confirmed
disc slippage in neck-MRI confirmed
Fibro
IBS-D
Ulcers-endoscopic confirm
dishydrotic eczema
Costochondritis
Had both knees scoped in '93' (awesome improvement)
Are we having fun yet?


yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 12/29/2006 9:11 AM (GMT -7)   
downupside, (thatsabraintwister).... u mentioned your eye being affected, that is how i started with the RA diagnosis. i had a case of iritis and immediately it went to my joints...... as soon as my primary put me on prednisone all was better and he said it must be inflammatory sent me to a rhuemmy and he said iritis and my joint pain are both common in RA so the hip bone is connected to the eyeball fyi!
get a referral to the rhuemmy and if the pcp asks why say second opinion i responded to the prednisone and i feel i have an inflammatory/ autoimmune disorder that is better qualified diagnosed by a rhuemmy, but say it in a sweet tone not to threaten her intelligence. hehehe and if that dont work find another doc! one that will listen.
i would be interested if the hypothermia is somehow related to the bodies reaction? keep us posted and welcome! yalinda

Marius123
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 12/29/2006 4:50 PM (GMT -7)   
downupside said...
about 2 months ago, after suffering from extreme hypothermia, and subsequently thawing out....hmm, I noticed some odd things happening.  My hips started aching, my right temple was throbbing all the time, my right eyeball felt like there was something in it all the time, and it was swollen feeling.  My arms ached, my at times they felt numb, and tingly.  My legs felt like rubber, and I was exausted.  I decided to take those complaints (along with others that I was experiencing) to the doctor.  But, not before I armed myself with a little bit of knowledge. 
 
While firing off my list of owies to the doctor, I watched her reaction.  Nothing.
She didin't even write most of them down.  Finally, when I was finished, she said "is your breath bad?, can you sleep?, Do you have depression?, Do you still enjoy doing the things you used to do?, etc....."  I replied with a "yes" to each question.  She asked if I was on anti-depressents.  I said No, and the depression is not something I need meds for, I'm depressed because everything hurts.
 
The doctor is young.  This I thought was a good thing, you know right out of school, all the newest medicine, diseases, gung ho, excited....   I think however, she was just plain overwhelmed by all my aches and pains.
 
I mentioned to the doctor that my hair was falling out.  She looked at my scalp and asked if this was normal.  NORMAL????  What's normal about patches of hair falling out?  My bathroom floor now has more hair than I do.  She had a diagnosis....stress.
 
Alrighty then, it's time to drop the ball and tell her what my symptoms may mean.  I didn't tell her I'd been on the internet, or spoken with an opthomologist friend, and that i may have an answer.  I wanted her to figure it out, and take all the credit.
 
I mentioned, temporal arteritis, otherwise known as giant cell disease.  TA/ GC has a direct correlation to polymyalgia rheumatica, which is an inflammatory rheumatic condition.  That would account to the pain in my hips.
 
Temporal arteritis was causing vision loss in my right eye by this time.  I wasn't leaving the docs office without an answer, and medication.  My worst fear was going blind.
 
But, of course, I played by the rules and waited for the doc. to make the diagnosis.  Still, she hemmed and hawed, and said "well, sounds like you've done some reading."  Then she said, "I still don't see how the pain in your hips has anything to do with your headache, unless you have an auto-immune disease, which I am certain you don't".
 
What?  Auto immune disease?  You mean like Lupus? 
All of a sudden, I'm on a mission.  I need to get home, get back on the internet and read all I can about Lupus.  The doctor then says to me "I'll put you on 20mg. prednisone for 30 days.  If your symptoms don't subside within 24-48 hrs. call me, and we'll take you off of it."  She explained that prednisone would handle the pain in my temple and eye, and the aches in the hips, etc. if that was truly what I was experiencing.
 
I then asked her what kind of tests she'll be running.  She said a complete CBC, rheumatoid factor, double stranded DNA antibody, ANA, ESR (sed rate), and lipid panel.
 
That was a week ago today.  The prednisone is working.  The temporal headache is gone, the eyeball swelling has subsided, my vision is back to almost normal, the pain in my hips is 75% better some days.  The side effects of the prednisone are not good.  I'm lethargic, feel sad, my whole head feels like it is in a vice grip 12 hrs. a day, I'm no fun to be around.  Not even my chihuahua likes me right now. 
 
The CBC shows anemia (duh, I'm a 51 year old female that weighs only 109lbs, and 5'6", due to another of my symptons, rapid weight loss).  All the rest of the labs show within normal, but either low or high range, indicating something going on....
 
I haven't head a peep from the doc regarding the test to determine the liklihood I have lupus.  I guess she went on holiday.....oh well....
 
Any other Giant cell sufferers out there that may have lupus?  Or, vice versa. 
 
 
 
Awwwww Cr.P !!!!! Autoimmune disease on first sight with no examination......................................................... run awaaaaay ! Find a new doc.
 
The prednisone is always working because it just supresses yr immune system, and 100% of the cases of ANY diesease - the immune system is the main causative for the symptoms when you're sick for all the vertebral multicellular organisms on earth.
All I know about giant cells - that it is something related to a VVIIRRUUSSS......


Official dx, but I have doubts: chronic reiter's syndrome (1yr and 6 mnths).
suffer form chronic conjuctivitis, mild arthritis, subfebrile fever and fatigue, "sometimes" also showing some strange short lived mild aches all over the body (with no exclusions).

Post Edited (Marius123) : 12/29/2006 5:04:17 PM (GMT-7)

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