HLA-B27 positive male and shingles shot

[thrillmonster]

Last  fall  my  pharmacist  where  I  have  received  all  my  medications  for  many  years  encouraged  me  to  have  the  Shingles Vaccine   Shot.  I  asked  if  it  was  ok  to  take  with  my  HUMIRA   and  prednisone  and   was  told  it  was  fine.  I  was  injected  with  the  vaccine  and  became  ill  within  24  hours  and  my  eyes  became  seriously  inflamed.  I  sought  medical  care  and  saw  a  Opthamologist  who  diagnosed  Iritis   and  Uveitis.  Six  months  later  my  vision  has  deteriorated  and  I  have  considerable  floaters.  I  have  been  referred  to  a  major medical school, and  Eye  Institute.  The  Opthamologist  tells  me  the  "floaters"  are  likely  permanent  and much  to  my  emotional distress   admitted  they  have  never  seen  this  reaction  before. Do  you  know  where  I  could  look   to  possibly  track  down perhaps  some  other doctor   who  knows  how  to  treat  this.  They  think  this  may  be  a  new  syndrome  or  reaction  that  needs  to  be  documented  and  published.  Meanwhile  they  have  taken  me  off  all  Reactive Arthritis  meds  and  my  health  is   sinking.  I  am  a  66  year  old   male  and  becoming  very  afraid   I  may  go  blind.

[PirateBird]

These messages are old but I'll go through the points as best I can.

1. Always refuse LIVE vaccines from your pharmacist if you have an autoimmune disease (dead are fine like the flu shot)

The live vaccines can stimulate inflammation and flareups as well as other adverse reactions.

2. Your iritis flare could have been caused by this interaction.

Although it sounds like you had inflammation there for a while and probably didn't notice or left your iritis untreated. Iritis is very serious and should be treated ASAP and you should also have regular checkups with your eye doctor.

3. People who do not carry the gene for spondylitis or iritis can still get iritis if they have inflammation problems.

4. You need to report any injury from an injection (including adverse reactions) to the CDC website (their phones don't pick up)

5. Please never stop taking your medication unless told to do so.

Believe me I know how terrifying it is and how many people think that because they are feeling better they can stop them. There is damage happening everyday REGARDLESS of how you feel. Stopping your medication works against you. Don't let your disease get the upper hand again.

[HLAB27pos]

I have been seeing a retina specialist for 10 years. After going to the National Eye Institute to participate in a study which did not work out I was referred to a doctor In Houston, Texas. She has aggressively treating my uveitis and has kept me seeing. I was diagnosed in 1991. At the time the docs had no idea what was causing it. They all kept asking about tick bites and lyme disease. Finally, blood was tested and came back positive for HLA-B27. There are specialists around the country (in larger cities) who treat eye imflammation. I was told that due to the genetic factor I can never be cured, but it can and has been controlled.
Don't give up. Contact me if you need more info.

[nomoreflares]

I too am new to this community. I happened upon this site when doing a search for flu shot/uveitis. I am also HLA-B27 positive and have had some pretty serious flares with iritis/uveitis as well as reactive arthritis issues in the past.
My doctor put me on Humira after telling me that I have an autoimmune disease (or multiple) and seemed content to keep me on it forever. Due to my own concerns, I stopped my injections 2 years ago. I did have a bad iritis flare this past winter and after drops didn't control it, was put on a long round and high dosage of prednisone (which I hope to never be on again, though it did help with healing.)
I've been trying to figure out what brought this on in the first place and have wondered if there's a connection to my yearly flu shot that I'm been getting for many years. I've read many posts about a possible connection to the flu vaccine and autoimmune and uveitis occurrences and have decided it's well worth the risk to skip my vaccine this year and see what happens.
I'm feeling great now and have added coconut oil (though just a Tbsp. daily) to the other things I've read about--B vitamins, Turmeric, Fish Oil, Choline & Inositol (?), Ginger, cutting back on simple sugars, as well as adding a good daily probiotic (leaky gut/autoimmune issues?).
What I'm wondering now is what to add to reverse the residual Humira, Prednisone, vaccines, etc... that may be left in my system. Any input is greatly appreciated. The increase in autoimmune disease is no coincidence, someone needs to figure this out!!!

[Peggymousa]

Hi Im new to this site but I was interedted to read your threat about Herpes Zostra. Its a long story but to cut it short I had Herpes Zostra that was misdiagnosed as allergy hence it got worse and I ended up in hospital with the same neurological problems as you have described. I had a spinal tap where they fsiled to detect the virus even though I was given intravenus Acyclovir. The Acyclovir cause bright yellow vomiting and yellow diahorrea. Im still having movement / muscle problems

[thrillmonster]

thanks  again, - I  will  go  to  my  regular  exam  this  Thursday  and  my  friends  at  the  University  have  recommended  a  good  naturopathic doctor.  I  have  an  open  mind  to  anything  at  this  point  especially  when  my  doctors  have  stated  that  they  are  fresh  out  of  ideas. I  have  never  smoked  and  gave  up  drinking years  ago  to show  leadership  to  my  children  during  their  teenage  years.  However,  as  a  former  merchant  seaman  I   could  use  an imperial  pint  or  two  of  Newcastle  Brown Ale  right  now,-  if  not  three.

[thrillmonster]

I  just  finished  my  10  days  of   acyclovir. I  have  had  occasional trembling  or   shaking  within  my  left  eye  for  six months  after  this  Shingles  shot.  Last  night suddenly  a  small  patch  of  what  looks  like  shingles  or  hives  broke  out on the  left  side of  my  chest and  some  small  patches  appeared  as  well  down  to  my  left  wrist.  Also  on  the  upper  left  thigh  a  cluster  broke  out  with  small  patches  following  down  to  my  left  ankle. The  pain  was awful  like  it  was  following  the  course  of  a  nerve  or   something.  I  stood  up  and  felt  dizzy   with  intense  shaking  in  my  left  eye  which  subsided  after  one  hour. How  could  I  break  out  with  shingles  or  hives  after  a  course  of  anti-viral  acyclovir??.  I  see  all  the  doctors  this  Thursday  again and  dread  being  treated  like  a  nut  case.  My   son  photographed and  took  close-up video  of  the  rash/ shingles/hives ?  The  rash  has  eased  along  with  the  pain  but my  skin is   very  painful  to  touch. I  spoke  with  a  PH.D  Opthamology  researcher at  the  University  Medical School  who  told  me  the  varicella  virus  mutates  rapidly. She  felt  my  symptoms  could  be  Post herpetic neuralgia PHN,  Nystagmus/  fibromyalgia  along  with  fibromyalgia  of  the  eye.  I  also  wakeup  almost  every  hour  on  the  hour when  trying  to  sleep  in what  I  call  nerve  pain.  My  bilateral  vision  remains  blurred  at  the  snellen 20/200  level  in  left  eye  and  20/100  in   right  eye. They  can  see  no  apparent reason  for  the  blurring  which  cannot  be  corrected   except  that  both  eyes  are  seriously  inflamed.  There  are  a   small  number  of  inflammatory  cells  present in  each eye  that  I  treat  with  prednisone drops. Sitting  in  the  presence  of  experts  saying.  "whats  going on here?,  -  leaves  me  increasingly  afraid. I  called  the  doctor  to  report  the  rash/shingles/hives  and  more  bewilderment.  Have  any  thoughts?

[nutrinut_bob]

Don't wait for a final diagnosis to go after that vaccine injury claim, you may never get one.  Just go with the symptoms, and get a lawyer to handle it.  If it was me, I be going after the pharmacist too, he's got insurance for such things.

[thrillmonster]

I  am  on  Medicare  and  have  a  prescription  drug  plan  Part D. Now  with  the  changes  under  Obamacare  the  government  wants  all  of  us  over  60  to  have  the  Shingles  Vaccine.  It  did  not  require  a  prescription  here in  my  state.  As I  always  receive  the  flu  vaccine  each  year  from  the  same  Pharmacist  I  relied  upon  her  expertise.  In  hindsight  I  have  learned  to  never  do  that  again. Just  a  few  keystrokes  on  google  and  the  warning  was  there.  My  doctors  always  encouraged  me  to  have  the  flu  shot so when  I  was  assured there  was  no  interaction  issue  I  consented. The  Shingles  Vaccine  is  also  free  and  knowing how  expensive  it  was  before  over  $200.00  it  sounded  good.  The  most  serious  remaining  issue  after  six  months  is  the  Uveitis,  blurred  bilateral vision, nerve  pain   in  my  upper  thighs,  eye  pain,  dizziness  that  comes  and  goes  and  a  sensation that  I  am  going  to  pass out.  Other  than  that  I  feel  great. The  Eye  Specialists  don't  seem to  like  to  consider  symptoms  outside  of  the  eye.  So  if   they  can't  see  it  they  tend  to  dismiss  it. The  Rheumatologists  have  a  broader  view  but still  nobody  knows  what  to  do.  Most  of  my  life  I  have  steered clear  of  them but when  it  comes  to  eyesight  I'll  admit  I  am  stressed.  I  am  now  reading  up  on  everything  but  at  the  same  time  the  statute  of  limitations  is  12  months  to  file  a  report  and  claim.  I  really  have  no  choice  but  to  protect myself.

[TheLightSeeker]

Hi thrillmonster.

Well, I did not realize that you were vaccinated some time ago.
One thing which must be avoided is postherpetic neuralgia (PHN), following
the onset of the activation of the Herpes Zoster virus.
So, at this point, I have no idea whether you have symptoms related to PHN, which cause some damage to the nerve roots, which in turn causes stabbing or burning type of pain ( abnormal electrical signals  sent to the brain from the affected dermatones of the skin).

Capsaicin creams can provide some relief, should you have some PHN symptoms, but you have to use it 3-4 times daily for a few weeks to experience notable improvement.

Coconut oil contains monolaurin, which has antiviral properties & has been proven effective against the Herpes viruses, by interfering with their lipid membranes, (Ref: Kristmundsdottir et al. 1999; Clarke et al. 2000)
Therapeutic dose is 4-7 Tablespoons daily, however,  the starting dose recommended is 2T throughout the day for week one, 3T daily for week 3 and so on, to avoid herxing effects.
Extra virgin coconut oil is what I always use myself.

No known drug interactions and no side effects are reported with the above
therapies when used as directed.

I have come-up  a Natural/ Holistic alternative to the  conventional medical treatment with  Biologics, for educational purposes only, and if interested
let me know. I can send it to you in a PM.

And by the way, there's no such thing as coincidence, lol!

One more thing. A loose end actually. How did this vaccine incident slip by the prescribing doctor?
A medical doctor has to sign a script for the vaccine, right?
What happened there? Just curious!

Best wishes.
Niko

[thrillmonster]

Thank you for  your  thoughtful  consideration and I  thank you  for  your information.  Its distressing when  the  best  experts tell  me  collectively  that  they  don't  know  what to  do. They  stopped all  my  arthritis meds  and  put me  on antiviral drug  acyclovir. However  a   PhD  and  researcher  familiar  with  the  varicella virus told me  that  its  too  late  as  the  virus  mutates and  the  optimum time  has  long  passed  after  6  months. We  all  get  together again this  coming  week  when they'll  try  something  else. Additionally   there  is  disagreement  within my  medical  team. I  also  have  experienced  dizziness,  loss  of  balance  on  my  left  side and  have  fallen  as   I  have  muscle weakness  on  that  side  and  fibromyalgia type  symptoms.  Since  this  is  new  to  the pros  they  tend  to  look  for  someone  else  to  treat  me.  Most  troubling  is  my  blurred vision  and   after  injecting me  with  dye and  taking  numerous  photos   with  imaging  equipment   they  failed  to  find  a  reason.  One  Rheumatologist  feels  there  is  something neurological  at  play  here   and  is  consulting  with  anyone  or  any lead  he  can  find.  I  often  feel  light  headed  and  feel  like  I  could  pass out. My  blood  tests  all  look  fairly  normal.  Yes,  stress  is  a  factor  and  I  have  learned  that  if  I  don't  control  it  my  arthritic symptoms  with  Reactive  Arthritis  go  down  hill  rapidly. Thank  you  again  for  your  information  and  if  you  think  of  anything  more  I  would  appreciate  it. All  these  symptoms  commenced  slowly  within  the  first  24  hours  of  shingles  vaccine  injection  interaction with  Humira  and  Prednisone.  I  had  not  had  uveitis  or  eye  issues  in  nearly  20 years   so  its  difficult  to  believe  its  a  coincidence.

[TheLightSeeker]

OK, thrillmonster, here's my take on your Iritis and Uveitis dx, which also could be one and the same thing, as Iritis is actually Anterior Uveitis, involved in the majority of Uveitis cases (up to 90%).

Here's the part that is very pertinent to you:

1.Acute anterior uveitis is commonly associated with HLA-B27.
While the direct connection of HLA-B27 to certain disease development has not been established (i.e. 90% of Ankylosing Spondilitis  (AS) sufferers are HLA-B27 positive, yet the majority of  people with HLA-B27 do not develop AS.
To my opinion, there are HLA-B27 activating factors, to initiate  these disease processes, such as environmental, lifestyle, other immunological
factors etc.

2. There's now scientific evidence that Varicella zoster virus which causes
Shingles among other viral and bacterial infectious agents are considered significant causes of Anterior Uveitis.
Ref : PMID: 21918442 ( Article title:Viral anterior uveitis)
PMID: 15222650 ( Article title: Spondyloarthropathies )
Please refer to my previous reply where I mentioned the vaccine you
have taken for shingles contains a live virus, that has put you at a risk of getting this very same virus, you were supposed to be protected from,
because of your particular situation ( Treatment with Humira and Prednisone).

My opinion is that your pharmacist messed up badly, by recommending the vaccine - and please forgive my ignorance if the new inactivated vaccine for shingles(not live) has been already developed and used in your case , which most likely would not have worked anyway, because of  your Humira and Prednisone treatment.

If I were you I would probably seek a holistic or naturopathic doctor, to help me correct some of this and bring me back to at least the pre-vaccination state. Not sure if the Uveitis can be reversed when the suspected underlying factors have been removed ( the ones possible to remove),
however if might hopefully help stop or slow down its progression.

There are some things you can do on your own (let me know if you this interests you), but it is critical that you consult with a Holistic Dr or ND asap, since this a rather urgent and at the same time delicate health matter, while waiting for the Eye Institute appointment.
If you have any time flexibility, ask to be put on the cancellation waiting list,
for possibly earlier appointment, if you feel your case was not considered a priority.
Stress indeed, could be a significant and very underated contributing factor.
Proper nutrition, staying physically active, meditation (Use meditation CDs if unable to meditate) do fun things, laugh, whatever you can do to lower your stress levels will pay big dividends in the end.

One consideration to note is that any legal rights/claims you may have in the event that your pharmacist was indeed responsible for all this,
may be easily compromised by the specific action you decide to take.

I hope this helps, however, it is very important to note here, that my comments and suggestions are NOT intended as a substitute for medical advice.

Wishing you well.
Niko

[TheLightSeeker]

Shingles vaccination while on Humira (or any other biologic drugs-all of which are immuno-suppresive)
is NOT recommended by both FDA and the American College of Rheumatologists!
It is a live virus which itself may compromise further your immune system
and even cause shingles instead of preventing it, while you're on Humira.

I will comment later on your eye issue, as I'm at work now.

Cheers,
Niko