did anyones immune system go into shock after surgery?

Has anyone had troubles with their Lupus after surgery? My Lupus was doing fine until I had surgery and then all hell broke loose! After being hospitalized and high doses of I.V steriods, steriods at home I think my immune system is finally setteling down. My Lupus got so bad a few weeks ago I now have skin Lupus along with my sle, and fibromyalgia. But in the long run I think it will still all be worth it to have a new body!! Just wondering about everyones experience. Thank you in advance for sharing. Stacey in Indiana

Unfortunately, surgery doesn't take away Lupus flares.... wi**** did!!! I have a theory that because of all the estrogen released along with the fat lost... we can actually end up with worse flares for awhile.... but just a theory.... I always to do worse around period time or during periods of quick weight loss and better when my weight stabilizes or has a very slow loss? On the whole, it is nice just to move around the world easier... however I can't say that is pain free yet! Lookin forward to menopause! B

Hi Stacey, I don't check this board very often because there is not much activity on it. I am so sorry that you now have discoid Lupus. I have a friend with it and she gets alot of skin lesions. The auto immune drugs like Methotrexate have helped her. I had surgery 2 years ago and my Lupus has been down hill ever since. Anytime you have stress to your system you run the risk of a flare. Even though I feel bad now I feel so much better weighing 165 pounds less and not having: high blood pressure, high cholesterol, Asthma, Gerd..... Take Care

Stacey-

By now, I'm sure things have straightened out for you, and I hope your SLE regimen has improved with your weight loss.

I had my DS in 2009, at St. Vincent's in Carmel, IN.  My surgeon's standard post op release is 72 hours.  She kept me in for a full week, just to be sure that the surgery would not throw me into a major flare.  If it did, I was already in the hospital, and treatment could begin immediately. No major flarew...in fact, no flare at all immediately post-op.

Almost 5 years later, prednisone is reserved for major flares, and I haven't had one of those since my first year post-op.

The surgery opened up a whole new arsenal of meds to fight lupus.  Plaquenil worked for the first time.  Lyrica worked for fibro pain. Flexeril decreased muscle spasms and increased range of motion. However...I had GERD pre-op, and it didn't go away, unlike most with RNY expereience.  I'm cool with taking 40mg omeprazole daily  for life, to keep the acid down.

I have just experienced what my doctor says is a discoid lesion on my outer thigh.  Never had that manifestation before.

 

 

 

I have had labs every six months since surgery, due to one irregularity or another.  I was not deficient in anything prior to having my Duodenal Switch, so I'm not really sure that nutritional deficiencies made me any more susceptible to Lupus or Fibromyalgia, since these were diagnosed nearly a decade before I had my DS. 

Since I will be done with my surgeon's 5 year follow next May, and will be working fully with my PCP and Hemo,  I will suggest to them that we have complete labs every year, with spot checks at six months for problem areas, which for me have trended low in  calcium (high PTH), zinc, and Vitamin D, or whatever is revealed by the complete labs.

In doing my own research, I discovered that Plaqeunil depletes Vitamin D (catabolizes it), so that explains my D deficiency.  I now take 100,000 IU of  dry Vitamin D daily.  Since DSer's malabsorb 80% of all fats, and Vitamin D is a fat soluble vitamin, all my fat soluble vitamins (A, D, E, K1 & K2) must be in dry, water miscible form.  Those are the vitamins DSers are most in danger of becoming deficient in, in addition to protein.  I have never let go of my protein shakes.  I use them as a supplement to my regular solid food nutrition plan, and I have not gained weight with it. I also do my own B12 shots at home.  My Hemo writes a prescription for a vial and syringes.  I had to have iron infusions last summer, and my iron is just now coming back down into normal range.  I use heme iron (Proferrin)  with Vitamin C to help absorption.

Having a DS with SLE means a huge non-negotiable commitment to a supplement and protein/nutrition regimen.  Expensive..it can be, but once you know the full complement of vitamins you need, you can find sources that will make it a little cheaper.

The payoff?  Plaquenil works now at my lower weight, when before all I had was prednisone.

Totally worth it!     

I agree with you, Divine Lady.   In fact, I will ask my PCP to do that, as she will be taking over my complete WLS care next February. 

Surgeon has a longitudinal outcome study going on and I'm one of the subjects, hence the five year follow.

 

I think that's a good idea, but if your doctor codes the labs properly, they should be covered by insurance. If they are notated rule out (r/o)  whatever the code is,  instead of routine or surgical or intestinal malabsorption, then the insurance should pay for them.

Here's the sheet my surgeon hands out for PCP and other medical providers info:

 

 

This list includes labs we have had performed for Duodenal Switch patients.  The first group, every 3 to 6 months for life .with retests at 3 months for specific deficiencies.  The second group, annually, as long as the first year results were comfortably within normal limits. Primary care physicians, feel free to call  with questions.

 

1^st Group

 

*80053          Comprehensive Metabolic profile: (sodium, potassium, chloride, glucose,BUN, creatinine, calcium, total protein, albumin, total bilirubin, alkaline phosphatase, aspartate aminotransferase)  (10231)

* 84134          Pre-albumin:

* 7600            Lipid profile: (cholesterol, HDL, LDL, triglycerides, chol/HDL ratio)

* 10256          Hep panel: includes ALT (SPGT) & GGT)

* 84100          Phosphorous – Inorganic:  (718)

* 83735          Magnesium:

* 84550          Uric Acid:  (905)

* 7444            Thyroid panel: (T3U, T4, FTI, TSH)  (84437; 84443; 84479; 84480)

* 85025          Hemogram with platelets:  (1759)

* 7573            Iron: TIBC, % sat

* 83550          Ferritin:  (457)

* 84630          Zinc:  (945)

* 84446          Vitamin A:  (921)

* 82306          Vitamin D: (25-hydroxy)   (680)

* 84052          Vitamin B-1: (Thiamin)  (4052)

* 84207          Vitamin B-6: (Pyridoxine)

* 7065            Vitamin B-12 & Folate:  (82607; 82746)

* 83970          Serum intact: PTH

* 83937          Osteocalcin:

* 84597          Vitamin K:

* 85610          PT:

* 85730          PTT:

 

2^ND GROUP

 

* 593              LDH:

* 31789          Homocysteine, Cardio:

* 83921          MMA:

* 367              Cortisol:

* 84255          Selenium:

* 84590          Vitamin E:

* 82525          Copper:

 

 

For diabetics ONLY:

 

*496 - HEMOGLOBIN A1C   

 

 

 

 

 

POSSIBLE DIAGNOSIS CODES

 

 

269.2              Hypovitaminosis

 

268                 Vitamin D deficiency

 

275.40            Calcium deficiency

 

266.2              Cyanocobalamin deficiency  (B12)

 

281.1             other B12 deficiency anemia

 

281.0              Pernicious anemia

 

280.9              Iron-deficiency anemia

 

281.2              Folate deficiency anemia

 

285.9              Anemia, unspecified 

 

269.3              Zinc deficiency

 

244.9              Hypothryoidism

 

250.0              Diabetes 

 

401.9              Hypertension

 

276.9              Electrolyte and fluid disorders

 

272.0              Hypercholesterolemia

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - 

 

*579.3             Surgical malabsorption* 

 

*579.8             Intestinal malabsorption  *

 

 

*  Bands or sleeves should not use these codes as they are not accurate.

 

*Some insurance companies will not pay for any procedure that uses these codes.

Divine Lady-

I was diagnosed with lupus (SLE) for almost a decade before I had my Duodenal Switch, and had no vitamin deficiencies when SLE was diagnosed.

My DS...at least for me...has made coping with SLE easier, as Plaquenil did not work to keep flares down.  All I had was prednisone, and that helped with my weight increase to 405.  I was in the mid 200's prior.  Still SMO, but not as much as after the prednisone regimen.

I did read recently that Plaquenil depletes Vitamin D...and that explains my Vitamin D always coming up low normal or deficient. I have begun taking 100,000 IU of Dry D every day. 

DSer's cannot take the oil-filled capsules...we only absorb 20% of all dietary fat ingested, so we would not even absorb those.

Lupus is an auto-immune disease.  We are more susceptible to auto-immune diseases due to the high frequency of nutritional deficiencies.  My personal opinion is that complete labs should be required every 3-6 months for WLS patients rather than once/year.  I am considering paying for my own once a year to get a twice a year picture of what is happening with my body.