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AmyTx
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 5/10/2010 4:19 PM (GMT -7)   
im awaiting on the results from my MMA test to see if i am indeed b12 def..normal b12 levels are 200-1100 but mine came back at 318 although its in range some people cane experience some symptoms between 200 and 400.. anyone take supplements or do you do the b12 shots...anything i should be concerned about regarding both
Female: 38 yrs/old DX: Lupus (dx:'03) MCTD, Raynaud's, Anxiety./panic disorder, GERD, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage 3 & 5 Lupus Nephritis. PRES ,Seizures, Photosensitivity since childhood, vasculitis, left thumb and toe amputated from raynauds, Sjogren's
Meds: cellcept, Plaquenil,Prednisone 10,Miracle mouthwash,bactrim, actonel, caltrate, Xanax, Darvocet, Xopenex inhaler, Xopenex Nebulizer, Spiriva, prevacid, aspirin 325mg, pantaprozole and carafate


joy47
Regular Member


Date Joined Feb 2010
Total Posts : 75
   Posted 5/10/2010 4:28 PM (GMT -7)   
hey amy, ive taken b-12 injections for 30 years its no big deal. Also i know when its time cause im so tired. HOpe everything goes well for you.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7017
   Posted 5/10/2010 4:42 PM (GMT -7)   
Long ago my rheumy suggested B12 and I've taken a chewable B12 supplement ever since....I don't think anyone has ever formally tested me for it, but I figured it couldn't hurt!

Cheers,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


AmyTx
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 5/10/2010 5:01 PM (GMT -7)   
yea it really cant hurt but im finding out if i need the supplements or the injections..i find out tomorrow and its exhausting waiting for it lol
Female: 38 yrs/old DX: Lupus (dx:'03) MCTD, Raynaud's, Anxiety./panic disorder, GERD, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage 3 & 5 Lupus Nephritis. PRES ,Seizures, Photosensitivity since childhood, vasculitis, left thumb and toe amputated from raynauds, Sjogren's
Meds: cellcept, Plaquenil,Prednisone 10,Miracle mouthwash,bactrim, actonel, caltrate, Xanax, Darvocet, Xopenex inhaler, Xopenex Nebulizer, Spiriva, prevacid, aspirin 325mg, pantaprozole and carafate


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 5/10/2010 5:30 PM (GMT -7)   
Amy,

I've been thinking about you, how did your sinus surgery go?
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid and Tramadol (as needed) and magic mouthwash ( as needed for mouth sores)


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 5/10/2010 7:21 PM (GMT -7)   
Hi,
I give myself B-12 injections. Hope you feel better soon.

Babs

AmyTx
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 5/10/2010 7:42 PM (GMT -7)   
sinus surgery went great... not too much pain the worse part was the drainage... but im still slightly stuffy but other than that i feel like i can breathe better..and they put in a septal button from where lupus ate away at my spetum...something like vascultitis or just connective tissue issue thanks for asking...
i find out b12 tomorrow
Female: 38 yrs/old DX: Lupus (dx:'03) MCTD, Raynaud's, Anxiety./panic disorder, GERD, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage 3 & 5 Lupus Nephritis. PRES ,Seizures, Photosensitivity since childhood, vasculitis, left thumb and toe amputated from raynauds, Sjogren's
Meds: cellcept, Plaquenil,Prednisone 10,Miracle mouthwash,bactrim, actonel, caltrate, Xanax, Darvocet, Xopenex inhaler, Xopenex Nebulizer, Spiriva, prevacid, aspirin 325mg, pantaprozole and carafate


jesimae
Regular Member


Date Joined Oct 2009
Total Posts : 109
   Posted 5/15/2010 12:37 AM (GMT -7)   
Okay, is there some type of correlation with Lupus and B12 deficiency? Is it because of treatment or what? I was so tired today I had to make myself get off the couch just to pee! Thought about anemia, but never had it before. Hahaha can't believe I just said that! Never had it before! lol What is the saying about the "new normal"? Gonna do some B12 research...
Jessica, diagnosis: unsure


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 5/15/2010 5:47 AM (GMT -7)   
Amy,

I'm so happy to hear that your surgery went well. Hopefully you'll continue to improve until you can breath well again.

Strange story. Until 2 years ago we had a rescue dog named Sister. Many years ago she developed a hole in her septum and the vet performed biopsies, which came back negative, on a yearly basis. We finally sent her to a veterinary school where she was diagnosed with lupus. I never did understand why or how the lupus chose to attack that tissue. She eventually healed but always had the hole.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin, synthroid, triamterene, actonel, niaspan, lunesta, cymbalta, vitamin D, Calcium, Multi Vit.


AmyTx
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 5/15/2010 9:44 AM (GMT -7)   
yea its strange about the nasal septum hole..strange.. i had my old rheumy took pictures of it haha
Female: 38 yrs/old DX: Lupus (dx:'03) MCTD, Raynaud's, Anxiety./panic disorder, GERD, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage 3 & 5 Lupus Nephritis. PRES ,Seizures, Photosensitivity since childhood, vasculitis, left thumb and toe amputated from raynauds, Sjogren's
Meds: cellcept, Plaquenil,Prednisone 10,Miracle mouthwash,bactrim, actonel, caltrate, Xanax, Darvocet, Xopenex inhaler, Xopenex Nebulizer, Spiriva, prevacid, aspirin 325mg, pantaprozole and carafate


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 5/15/2010 8:55 PM (GMT -7)   
Hi amy I guess it depends on the lab you use but  my doctor started me off on b12 shots 1 time a week for 4 weeks. and maricle happened My rates got worse rolleyes . Igot a letter from her friday asking me if I was even taking my shots. Now they are supposed to be once a month for life but I guess we will see what she says when I tell her I do take shots.
hugs
carol
furosemide,spironel,lisinopril,lortab,azithromyazin,detrol
nexium,temazepam,predisone,plaquenil,propanalol,citracal,pottasium, vitB12 ,iron,xopenex,advair,spirivia,soma,Vitamin D, cybalta
 
Dx lupus, scleroderma, pos. fibro, high blood pressure. COPD, need left lung transplant. cervical cancer survivor, osteoporsis.
 
"Consider it a pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance." - James 1:2&3
 


AmyTx
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 5/16/2010 2:43 PM (GMT -7)   
im not sure about b12 and vit d im supposed to be taking calcium with vit d and i havent started yet lol ive been prolonging taking it for about a year..i know i need too since im osteopenic i guess you could say im non compliant with my vitamins... my b12 checked out ffine this last time but i would like to take lose dose anyways along with floic acid
Female: 38 yrs/old DX: Lupus (dx:'03) MCTD, Raynaud's, Anxiety./panic disorder, GERD, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage 3 & 5 Lupus Nephritis. PRES ,Seizures, Photosensitivity since childhood, vasculitis, left thumb and toe amputated from raynauds, Sjogren's
Meds: cellcept, Plaquenil,Prednisone 10,Miracle mouthwash,bactrim, actonel, caltrate, Xanax, Darvocet, Xopenex inhaler, Xopenex Nebulizer, Spiriva, prevacid, aspirin 325mg, pantaprozole and carafate


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 6/13/2010 6:24 AM (GMT -7)   

Hi! Everyone,

Just saw neuro, rheumy and primary all within 2 weeks and had a pulmonary consult, too. Such fun! tongue My B12 was found to be 130 and the neuro said that was very seriously low, better @500, and that it is vital to your nervous system. He explained I did not have pernicious anemia as my cbc was ok, and explained that I am probably making autoantibodies against the intrinsic factor because of my autoimmune disease. Said primary should follow up and that I would most likely need a shot, and then even a repeat injection in two weeks.... rheumy called, they don't have b12 to give, he said I would get a shot from primary asap, primary said... take 1000mcgs orally every day for a month and repeat the blood test. Rheumy said why are you taking the pills instead of a shot??? I said because MY PRIMARY SAID TO!.. so then I looked for some studies comparing oral to injected... found two recent, (2009 and 2008) that suggested after a controlled study, that high doses of oral b12 demonstrated similar good effect to IM injections, at less cost and greater pt. satisfaction. So...... since I was flaring so badly, I took 2500 mcgs under my tongue for a week, ( I bought them because they were cherry flavored yeah and then dropped down to 1000 mcgs untill I get my level rechecked. I looked it up in a drug book, and on the Mayo clinic help site, and was reassured that high doses of B12 aren't really toxic. I just wish I could find vit/min tablets smaller than horse pills....

hugs, suetoo

 


God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, meloxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily. Vit. B12 2400 mcgs, Vit D 1000U and  Ambien every night.


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 6/16/2010 8:30 PM (GMT -7)   
Hope you don't mind me posting here, my b12 levels are low too and I just recently found a under the tongue 2,000 (b12) and it's small...and my neurologist also said
that levels under 400 for b12 need to be supplimented and are considered bad...and I'll be getting injections soon, cause my neuro wants me to do the injections
...once a week for the next 3 months at least...good luck to you ..and my vitamin D is a big horse pill, but I take it only twice a month, it helps...
Hope your feeling better soon.....
((((((((((((((((((((((((((((((((((((((((((((Amy))))))))))))))))))))))))))))))))))))))))))))))))))))))
Keep us posted Amy!
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********


Kirsi
New Member


Date Joined Feb 2010
Total Posts : 10
   Posted 6/17/2010 11:37 AM (GMT -7)   
I have Pernicious Anaemia amongst other Auto Immune conditions. I used to have Hydroxocobalamin injections every 12 weeks, which really helped but I joined the Pernicious Anaemia Society on line and discovered a lot of information from there. One of the Moderators negotiated with BigVits a 10% discount when certain Vitamins related to PA, or B12 deficiency were bought by our members. I can highly recommend Jarrow's Methyl B12, which comes in 1000mcg and 5000mcg. To get the best results, it is advised to keep the tablet under your tongue for as long as possible.
iherb.com and prohealth.com also sell vitamin B12 tablets. I think if you google B12-Extreme, it is the only B12 vitamin which has all four types of B12 but is very expensive.
Sorry, this sounds a bit garbled but I'm passionate about sharing information with other sufferers.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7017
   Posted 6/17/2010 2:46 PM (GMT -7)   
I use the Jarrows's brand as well, but I buy the cherry-flavored chewables...they make taking meds enjoyable!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 6/28/2010 1:13 AM (GMT -7)   
Years back, I had a B12 defiency dangerously low as doctor put it. I had to get weekly shots as well as take two pills for it. Every few months, I have to get bloodwork to check to see where it is at now. I had no probems with the shots or pills, and my insurance covered the shots, but didn't the pills (go figure lol).
 
Smurfy Shadow/Desirèe 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Depression, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux, Tumor Behind the Eye, Carpal Tunnel, Fibromyolgia, Clasterphobic, Arthritis
Medications:  Tri Nessa, Percocet, Metformin, Prilosec, Protonix, Zantac, Advair, Cingulair, Albuterol, Calcium + Vitamin D, Pro-Air, Pepcid, Rolaids, Zofran, Compuzeen, Refresh Plus Eye Drops  PRN: Epi-Pen, Albuterol Nebulizer, Benedryl
Undergoing Radiation Taking Lorazepam (Ativan) on Radiation Days

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