Has anyone seen an Immunologist for their autoimmune diseases?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

LeeLee123
Regular Member


Date Joined Jan 2006
Total Posts : 49
   Posted 2/26/2006 3:07 PM (GMT -6)   
I just wondered if anyone had been to an immunologist for their autoimmune diseases.  My Eye, Ear, Nose, and Throat specialialist says he thinks he will be sending me after next Thursday, according to how the tests come out this week.  I went and read some things.  I didn't exactly understand any of it, but I saw some interesting information.  It seems that my blood reports show that I was in poor shape to start Humira for my RA.  I had the one injection and came down sick with fever, chills, and a total body joint RA flare.  I had sinus infections and my AI is attacking my tmj and salivary  glands.  I am in excruciating pain.  So far I am on my third round of antibiotics.  I have had like 5 steroid injections..  and a prednisone pack of 21 and a decodrone pack of 21 and now on a new bottle of decadrone.  I am on HydroCodone for pain.  scool I have other medications as muscle relaxers and am also on Allegra.  I am worried about taking so many steroids, but the specialist said that was the only thing keeping me alive as my immune system is shot.  Eeeikks!!!  confused If anyone has been to an immunologist, please respond.  I would appreciate any information. I can't understand exactly what they could do for me.  The specialist said they could get my immune system back.  I read where the immunoligists work with RA and all the other autoimmune diseases.  I could not understand. Thanks. tongue

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 2/26/2006 3:44 PM (GMT -6)   
Hey LeeLee, I have not been to an immunologist, in fact, I didn't even know there was a doc out there that specialized totally in immunology (sp?)... good luck to you and let us know how your appt turns out... Duck
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds -  Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


LeeLee123
Regular Member


Date Joined Jan 2006
Total Posts : 49
   Posted 2/26/2006 4:12 PM (GMT -6)   
Thanks, Ducky. Do a net search on immunology and autoimmune diseases. There is like tons of information; I just can't understand any of it. An immunologist is like some kind of special microbiologist. I see that Vanderbilt University Hospital in Nashville, Tennessee has some. I guess this would be the closest to me. That would be like over a 6 hour drive. I think I would have to fly. I don't think I could ride that far. Heck, all the stuff I was seeing looked like they know exactly all about the autoimmune stuff. It looked like they knew too much. LOL These could be the people that developed the biologic treatments. I know I have never seen so much research and so many things that I could not understand. After looking at a few articles and really trying to read them, I felt that they could cure us all. :) When I find out if I am really going, I will let y'all know. AT that time I will hopefully have an explanation and idea from my doctor that I can understand. My regular doctor and my new rheumatologist sent me to this Eye, Ear, Nose, and Throat specialist because of the headaches, fever, chills, RA flare, sinus infections, tmj pain, tongue pain and neck and salivary gland pain. All of these things occured after the Humira injection. Also, the docs see things from my blood work. I went a few days getting very afraid of getting sepsis. Okay, I admit it... I am still afraid of that, not to mention the pain. So mainly, also, I admit to having anxiety and panic attacks over this. That is why I keep asking people about things and talking about myself all the time. I am just worried and scared. It always helps to find someone that has information or have had the same things or will just talk with me. Before I only dealt with pain and an inability to do lots or most of the things I would like to. I hurt, but I wasn't just plum scared to pieces. :) Thanks. LeeLee

elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1740
   Posted 2/27/2006 7:41 AM (GMT -6)   

Hi LeeLee,

Sorry to hear you're in such pain these days.  It sounds like an immunologist wouldn't be a bad idea to help in your case.  I've never thought of it before, but it makes perfece sense that an immunologist would work with autoimmune diseases.  The problem I see with it is there aren't that many immunologist out there.  Depending on where you live, it may be very difficult to find someone specializing in that field. 

I wondered about sinuses/allergies when taking Humira.  It seems that since I started Humira 3 months ago, my allergies have gotten much worse.  No infection or virus, just normal nasal allergies.  In any case, I hope your visit to the immunologist pans out for you.

Elcamino


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 2/27/2006 9:28 AM (GMT -6)   

hi!

i think seeking a consult with an immunologist would be a great thing to do.  they specialize in the way the immune system works.  i think the doc would get down to the nitty gritty as to what was in your system in the first place that caused the reaction you had, will find and treat any bacterial infection going on at the time, sort out any  latent viruses or any funny stuff floatin' around in your blood.

if anything, perhaps this specialist will guide you and point you in the right and next direction to take in treating RA.

best wishes


Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


LeeLee123
Regular Member


Date Joined Jan 2006
Total Posts : 49
   Posted 2/27/2006 12:28 PM (GMT -6)   
Thanks, Elcamino and Erin. :) That sounds good. I already have questions like should I try any of the other biologic treatments ever ever again. Mainly, I think my immune system has to have some help soon or I am just going to continue to get infections. I had a medical friend to check on the immunologists. He said that only the big medical research hospitals have them but that there are a few around in each of the USA regions. Thanks. Now to try to get to one. :)

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 2/27/2006 7:50 PM (GMT -6)   
dear LeeLee,
 
i sure hope you do get to see an immunologist.  if worse comes to worse, i would try a top-notch infectious disease doctor. 
 
i would think that if you had an active infection and took a TNF....a reaction like yours would be probable.  it says in black and white on these TNF print outs, "do not start if you have an active infection"...so perhaps this is what happenned.
in the future, perhaps you may need to have a dose of Benedryl before another injection.  that's an option!
but don't lose hope.  this might have just been a big old mess and everythiing happenned at one time.
 
the best thing to do is have a clean plate to work off of.  see what the next round of labs says and take it from there.
 
what about an allergist?  these TNF drugs....it is very rare for an immediate and severe reaction like this to happen.  there are however, proteins in these drugs that people are HIGHLY allergic to and don't know it!  i would think an allergist would be able to pinpoint this and maybe rule it out.
 
i would hate for anyone to suffer.  these Humira and Enbrel meds are lifesavers for so many.  and this diseases can get so devastating if not slowed and controlled by meds.
 
i worry about you!  can ya tell?!  please be careful and i hope you are feeling OK.
 
what University Hospitals are in your area?  say for instance Hospitals for Bone and Joint diseases?
 
best wishes,
erin
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


LeeLee123
Regular Member


Date Joined Jan 2006
Total Posts : 49
   Posted 2/28/2006 11:30 AM (GMT -6)   
Wowww Thanks, Erin. I don't know what hospitals are here for bone and joint diseases, but I am going to go research. I just called my new rheumatologist's office to ask if I could email her. Nope. I cannot. blah blah I guess people worry the docs. I don't know. Like she doesn't get any junk mail, huh? All I wanted to do was email her a list of visits, drugs, and treatments that have I have had since I saw her 2 weeks ago. I thought she needed to know because my labs are due in two weeks. She may want to postphone them. Plus I wanted to let her know what the specialist said about sending me to the immunologist. I will try to hold this against the nurse and not the doc. I need to like her and respect her. I don't know why but not being allowed to email the new doc worries me. I am thinking that this means that no matter what, I can never speak or communicate with her. Thanks for all of your help :)) and for worrying about me, too. :)) I needed to see this support now. :) I am silly and getting sensitive. huggggs LeeLee

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 2/28/2006 12:10 PM (GMT -6)   
i know it may be easier to write down and send info...but i have only known ONE doc who had patients' access his email; this was through a major NYC hospital though...not a personal email.  so it's a very "new" thing that only a few docs do. 
 
face to face communication, although tough to achieve, is ultimately the best.
 
you could always mail or fax labs and reports to the office.  i'm sure that's allowed.  i always fax my bloodwroks to any specialist i see before my next appointments..makes it quicker and easier for them.
 
i have bad communication problems with my rheummy.  mad   i think it has to do with age!  in that office...there is NO ONE ther under the age of 70 it seems.  so when he talks with me....he's very just like, "oh...uh huh,  no i've never heard of anyone complain of that."   eyes and very passive too. eyes
my GI and PCP are firey though...they're great. 
it takes time to be able to REALLY accomplish good Dr./ patient communication and freedom...it's an art.  and in my opinion, a big barrier as to why people are not getting their issues addressed!  with phones ringing, docs looking like they're not paying attention, the "HMO-10-minute-and-you're-out-office-visit" and ya don't get a chance to finish!...it's terrible!
i know you're frustrated, worried & not feeling well...and this makes everything with doctor/office dealings even more frustrating.
 
take care of yourself!
erin  
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


LeeLee123
Regular Member


Date Joined Jan 2006
Total Posts : 49
   Posted 3/1/2006 8:44 PM (GMT -6)   
My Rheumatologist's nurse called me back after talking to the doc. She said she would get all my records up for the doc in a couple of weeks and for me to call her after I finish all the decodron tabs. after March 21. She was very nice, so I feel better. I realize now that I have been pushing to hurry for some action or results. Maybe I can relax and just hurt until things take place naturally. :) I had to see my regular doc today for extreme pain. I slept none last night, The pain has just been unbearable. He prescribed Clonazepam for 5 mg in the morning and 10 mg. at bedtime. He said to just take the painkillers. They didn't help last night or today. Finally this afternoon I got relief. Maybe this new medication helped although I kinda think it is some kind of a nerve thing more or less. I admit that I need it if it is. I looked on the net and it seems it is for seizures and anxiety. I haven't ever had a seizure, but I do have the anxiety now. I really just need to relax and just wait for better days. I will see my regular doc and the Ear, Nose, Throat and Eye specialist next Thursday. I go to the dentist next Wednesday. MY regular doc seems to think that with a bit of time, I will have the Humira out of my system and my RA will be manageable. I hope so. Instead of the normal joints being attacked, it seems to be all in the facial areas, neck, and head. If I am not better by a week from tomorrow, I do want to go to the immunologist.

Caren
New Member


Date Joined Mar 2006
Total Posts : 4
   Posted 3/4/2006 1:46 AM (GMT -6)   
I see an immunologist for crest syndrome, which is the start of scleroderma, which is related to arthritis.  On my first visit he spent 1 1/2 hours asking me very detailed questions as to pin point the proper diagnosis. So far I am pleased with him, he came very highly recommended so I haven't felt the need to see anyone else at this time.  

LeeLee123
Regular Member


Date Joined Jan 2006
Total Posts : 49
   Posted 3/5/2006 10:22 AM (GMT -6)   
Thanks, Caren tongue .  That is good news to hear.  It may end up that I won't be going to the immunologist.  My specialist and my regular doctor are meeting with me together this coming Thursday morning.  I seem to be getting much better.  My regular doctor took me off of my antibiotics and the Allegra this past Wednesday.  Until today I have done excellent.  I woke up this morning with a bad headache and some sinus problems confused   so it could be coming back.  My jaw, face, neck, tongue, and gland pains are all better now.  If all this infection and pain come back, I will definitely want to go to the immunologist.  Thanks again Caren for your reply, and I hope you are doing well. :-)

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 3/5/2006 11:25 AM (GMT -6)   
Hey LeeLee, glad you are starting to feel better (somewhat) let us know what the docs say on Thursday, we'll be keeping our fingers crossed for you - Duck
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds -  Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


bromark
Veteran Member


Date Joined Oct 2005
Total Posts : 600
   Posted 3/7/2006 3:58 PM (GMT -6)   
LeeLee
I am in the initial work up of lab work with an immunologist. My immune system is low and they are still running test to find out why. I don't have RA I have OA so I don't know if we will have anything in common. Keep us posted as to what you find out.

Mark
We make a living by what we get; we make a life by what we give.
Sir Winston Churchil
 
A cheerful heart is good medicine,
but a crushed spirit dries up the bones.
Proverbs 17:22


LeeLee123
Regular Member


Date Joined Jan 2006
Total Posts : 49
   Posted 3/7/2006 10:50 PM (GMT -6)   
Thanks, Mark. I guess Iwill find out something this coming Thursday about seeing the immunologist. Somehow I hope you don't end up having the RA instead of the OA. This immune system thing and all these auto immune diseases are so knew to me. I read and think I understand a little bit, and then a few days later, I am mixed up again. :) I hope you do better, Mark, and the docs can figure out something for you. Please let us know what happens with you. LeeLee

LeeLee123
Regular Member


Date Joined Jan 2006
Total Posts : 49
   Posted 3/10/2006 4:38 PM (GMT -6)   
Hi Mark;) I wanted to get back with you to say that my general doctor and the ear, eyes, nose and throat specialist both met with me yesterday. they believe that I have my immune system built back up. I have had no new infections and I am much better. I don't know if it helped, but I drank lots of orange, apple, and grape juice and some apple cider vinegar and honey. I took all of the B vitamins and and a combination of minerals like zinc, seliinum, magnesium, copper, biotin, potassium, anc calcium, etc. I drank lots of water and ate fresh mustard greens, cabbage, and turnips from the gardens here. For over two weeks I lived on just those things and chicken soup made from a fresh chicken with a bit of onions and celery. I really wanted to try to see if I could help my immune system out. Either I did or the Humira finally left my system entirely. I will never know, but I tried my best. Now, for the bad news or scarey news.... they are sending me to a neurologist as they feel I have some symptons of MS. I just hope that this is just the RA mocking the MS or perhaps something left over from the Humira reaction. At any rate, I feel nearly wonderful. I am still taking the steroids though. I am almost pain free at this time. I hope it is not because my brain is gone :)). Ha We have to laugh and have fun. Let us know what happens with you and your low immune system.
New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, October 25, 2014 10:58 AM (GMT -6)
There are a total of 2,251,033 posts in 250,400 threads.
View Active Threads


Who's Online
This forum has 157556 registered members. Please welcome our newest member, redcardinal.
340 Guest(s), 9 Registered Member(s) are currently online.  Details
logoslidat, upjo, PeterDisAbelard., quilty, Circus Dog, tallguy, ShinytopPC, MsWorryWart, tired of it


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest  Follow HealingWell.com on YouTube
Advertisement
Advertisement

©1996-2014 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer