Has anyone seen an Immunologist for their autoimmune diseases?

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.  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!!!  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.

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

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

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

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.    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."   and very passive too.

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  

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.  

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

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, I've read a number of your posts so I thought I might give you a few thoughts I've had some experience with. I commend you on wanting to go back to work but it may be some time as you probably know by now. Nothing moves quickly with severe RA. It takes time to find the right combinations of meds, each of which you must stay on for months to determine if it even works partially or at all. Then on to the next. I've just experienced a 2 year run and may have found the right combo, at least for the time being using a DMARD, leflunomide and Humira. I'm back to work and nearly normal. The biggest obstacle is that after 2 years of inactivity I am severely out of shape. Getting there a little at a time. Its good you are taking good care of yourself with your minerals and greens or diet. I also had immune problems diagnosed years ago, Gamma Globulin Anemia. Once I was diagnosed nearly 20 years ago it all made sense. I've had infections all of my childhood and adult life. Many times severe enough that I've been hospitalized dozens of times with pneumonia, cuts becoming infected, severe sinus infections 2-3 times per year and used life flights 3 occasions to larger hospitals for treatment. Since RA was confirmed over a year ago I am back to using gamma globulin infusions every 2 months to help bolster my immune system. My immunologist told me to steer clear of remicade due to its potency to further weaken my immune system. He stated that most biologics will but remicade was too strong for my situation. So far I'm doing well.

One last thing about your situation I read in one of your posts. Filing for disability is not a bad idea in your situation. It can take 6-10 months just to get approved. If denied the appeal process can take many more months. I've seen both, some go smoothly and others drag out with even the best medical documentation. It ia also true that they do not consider RA an automatic disability like some other diseases. They don't get it. It's as debilitating as they come and some of us never get back our lives. The disability system works as long as you are honest. It allows you to file with all the medical documentation you can round up and of course send you to a physician to confirm your medical information. If you are awarded disability you then you receive your earned benefits. If at some point you find the right meds to get back enough of your life you still want to continue your career, the Government just asks that you file the proper paperwork in a timely manner and there are no penalties. They then will withhold part or all of your benefits based on your wages and ability to work full or part time. If you should have health issues come back, new or old, you just file some paperwork and your benefits will return without the extended wait. Should you again feel well enough to return then you file the proper documents again IN A TIMELY MANNER.

Good luck and I hope they find the right combination. By the way. If your doctor is unwilling to assist you in filing I'm sure you can find a qualified Rheumatologist that will.