Author Topic: Sjogrens treatment side effects  (Read 32267 times)

jasonsmith

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Re: Sjogrens treatment side effects
« Reply #90 on: October 16, 2011, 12:06:24 AM »
Do you have any recommendations on what bloodwork to get? I know they can check your blood for nutrition. But would there be other bloodwork so you know if you have problems absorbing certain nutrients?

susanep

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Re: Sjogrens treatment side effects
« Reply #91 on: October 16, 2011, 01:54:18 AM »
Jason I know it's hard, and you are wondering what to do in this terrible economy right now. I am facing it too.

Since getting my disability, I have been getting insurance help, but we got a notice that it may be cut off at the end of this month. So I may be in the same situation.

It is really hard isn't it? It does make it easier to want to take some vitamin type things ourselves, but not sure what helps.

I will say a prayer for you, and you say one for us too, ok?

susanep
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi

jasonsmith

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Re: Sjogrens treatment side effects
« Reply #92 on: October 16, 2011, 04:55:19 AM »
Jason, I don't know where you are getting your information, but the eye issues are exceedingly rare. Reason being, the plaquenil is being given to AI patients at a pretty low dose. The dosage schedule for malaria is many more mgm than is used for the AI diseases. The lower dose seldom causes much eye involvement.

Where did you find the dosage for Malaria? I read that the dosage for Malaria prevention is 400mg weekly. For Malaria treatment, it says that 800mg for the first dose, 400mg for the second dose six to eight hours later, then followed by 400 mg for the next two days.

It doesn't sound like prevention or treatment for Malaria is usuing high dosages for long periods of time. The highest dose would be for treatment 1200mg, but that's just for one day.

Here's where I read it at:

http://antibiotics.emedtv.com/plaquenil/plaquenil-dosage-p2.html

It's the same thing I had read on other sites as well.

anita

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Re: Sjogrens treatment side effects
« Reply #93 on: October 16, 2011, 05:32:32 AM »
Jason,

I found the same info you posted about Malaria dosing.  However, I also found this on Wikipedia for Plaquenil.  Hopes it helps put it into perspective.  The risk IS very low, but you will just have to decide for yourself.  Like I said before, your anxiety over this may cause you more problems for your health in general, then the plaquenil itself to your eyes or anything else. 

"One of the most serious side effects is a toxicity in the eye.[11]  (generally with chronic use) The daily safe maximum dose for eye toxicity can be computed from one's height and weight using this calculator. It should be noted that macular toxicity is related to the total cumulative dose rather than the daily dose. People taking 400mg of hydroxychloroquine or less per day generally have a negligible risk of macular toxicity, whereas the risk begins to go up when a person takes the medication over 5 years or has a cumulative dose of more than 1000 grams."

And as far as supplements, there are far more studies about positive results of B12 supplementation (for peripheral neuropathy and many other nerve related problems), so it is obvious most do metabolize it and get benefit from supplementation.  B12 can and should be checked by lab work.  NOT all patients with AI disease are deficient or unable to metabolize.

« Last Edit: October 16, 2011, 05:34:09 AM by anita »
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

gurs

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Re: Sjogrens treatment side effects
« Reply #94 on: October 16, 2011, 07:19:26 AM »
On the absorbing the B12 issue,  I take B12 caspules  and have high levels of B12, and was told by my gastro Doc that I tested negative for
pernicous anemia when I had a colonoscopy, however, my hormone doc said that this didnt matter, and I still need B12 shots?

My stomach is so bad with this Gastroparesis, I cant seem to absorb anything? My vitmains and some supplements I now
get in powdered form hoping it helps somewhat?

Nat, any advice on this?

Gursie
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

jasonsmith

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Re: Sjogrens treatment side effects
« Reply #95 on: October 16, 2011, 07:30:21 AM »
I think my B12 was good when the test was done. Though, there is a local place who does B12 shots.

I'll probably try the Plaquenil. Not sure how long I'll be able to take it as I have bad chronic diarrhea. So, it may not be tolerable.

I know people like getting on a medication that works and staying on it. Since the meds for this illness has long term risks. I still think it's something to look into with regards to rotating on different meds so you can reduce the chance of long term problems from staying on the same med year after year.

I've read of some who have to take Prednisone for whatever reason where they taper off of it for a while to help reduce long term problems. If I was able to take Plaquenil for years, I'd try to rotate over to something else for a while.

Narablueeyes

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Re: Sjogrens treatment side effects
« Reply #96 on: October 16, 2011, 07:51:08 AM »
On the absorbing the B12 issue,  I take B12 caspules  and have high levels of B12, and was told by my gastro Doc that I tested negative for
pernicous anemia when I had a colonoscopy, however, my hormone doc said that this didnt matter, and I still need B12 shots?

My stomach is so bad with this Gastroparesis, I cant seem to absorb anything? My vitmains and some supplements I now
get in powdered form hoping it helps somewhat?

Nat, any advice on this?

Gursie

I take all my vitamins in liquid form.  My bp meds seem to be working in pill form as well as my pain and anxiety meds.  So WHY not my vitamins in pill or caplet form??

Joe S.

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Re: Sjogrens treatment side effects
« Reply #97 on: October 16, 2011, 08:11:00 AM »
Jason, I know that you are searching for a cure or solution. I have found many supplements that help. I am not able to plaq or MTX that most on this forum take. I have had to find other management methods.

We have problems with sun light so I started taking vitamin D. After doing some research I found that D3 was more beneficial. My personal experience has shown that D3 is more helpful to me.

If you have nerve problems B12 is a good supplement.

When I was at a pain clinic in 1986 they recommended a good multivitamin stress tab and 500 mg vitamin C each day because of the stress pain puts on our bodies. The pain clinic also recommended 6-8 oz of carrot juice every day to help with endorphin creation which will reduce pain levels.

There are many other tips, techniques and supplements that can help us. Most are cataloged in the discussions on this forum.

R-Lipoic Acid and Acetyl L Carnitine would not be helpful if there was not a problem with our mitochondrial DNA. These two seem to help with brain fog. PQQ may be a future option to reverse mitochondria DNA damage and restore regeneration capabilities.

What we can not cure we have to manage. What we can not manage we have to survive until we can manage.
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Nat

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Re: Sjogrens treatment side effects
« Reply #98 on: October 16, 2011, 11:20:27 AM »
I have posted many studies to show the connection to the inability to metabolize B12 and autoimmune disease. Here are a few of the titles.

"Multiple Sclerosis Associated with Vitamin B12 Deficiency"
In this study it states," A vitamin B12 BINDING and or TRANSPORT is suspected."

"Vitamin B12 Metabolism in Multiple Sclerosis"
In this study it states, "There is a significant association between MS and disturbed vitamin B12 METABOLISM. "

"Sjogren's Syndrome Associated with Vitamin B12 Deficiency"

"Vitamin B12 Deficiency Common in Primary Hypothyroidism"

The problem is in the binding and the transport of B12. The previous study I posted showed that pancreatic enzymes are "ESSENTIAL determining factors for the TRANSPORT AND ABSORPTION of B12 in man."
A high blood level of B12 gotten through supplementation does not mean you have gotten B12 into your cells. If you lack pancreatic enzymes and the proper acidic environment in the upper gastrointestinal tract, you will be unable to absorb B12 into your cells. That is why the studies point to the 'METABOLISM' of B12.

When the University of Warwick researchers (my previous post) found that diabetic patients had a 76% reduced level of B1 in their blood plasma they made this announcement to the world's diabetics. The result was diabetics around the world began to supplement with B1. In a short period of time, world wide press releases had to be issued to tell them to stop. They were unable to properly metabolize B1, because they lacked B12, and it was causing kidney failure. I have one of these press releases from the LA Times that I will find and post. So, even though they were grossly deficient in B1, taking it in supplement form only caused further damage.

Jason, some of the nutrients autoimmune sufferers have been found deficient in are B1 ( as was seen in diabetics) B12 of course. Low iron and low Vitamin D.
If you are unable to carry blood borne protein bound calcium ( If you lack pancreatic enzymes you would not be able to digest proteins and you would not be able to carry calcium) you would not be able to METABOLIZE vitamin D. Protein bound calcium is necessary for the proper metabolism of vitamin D. As the following information states, " low levels of vitamin D in patients with autoimmune disease may be a RESULT rather than a cause of disease and that supplementing with vitamin D may actually EXACERBATE autoimmune disease." This just goes back to not taking nutrients you are unable to metabolize. An autoimmune sufferer has no ability to bind or transport vitamin D to its proper destination. Taking it in supplement form when you are unable to transport it can lead to other diseases like Sarcoidosis. It will just be deposited places you don't want it, just like calcium if it lacks it's binder, which is protein.
 
http://www.sciencedaily.com/releases/2009/04/090408164415.htm



Nat

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Re: Sjogrens treatment side effects
« Reply #99 on: October 16, 2011, 11:56:34 AM »
Here is some info on the connection to lack of iron and proteases. The protease TMPRSS6 is an essential component of a pathway that  detects iron deficiency permitting dietary iron absorption. The researchers describe this as "a novel and exciting finding."

http://www.sciencedaily.com/releases/2009/04/090408164415.htm

A  study just completed and published in the Archives of Internal Medicine found that taking iron supplements increased death risk by 3.9 percent. This was replicated in separate short-term analyses that lasted 4 years and 10 years. You can access some more information on this from Bloomberg in an article entitled, "Vitamins Tied to Higher Death Rates in Older Women in Study."

Taking more iron in supplement form if you are unable to properly metabolize it would lead to additional complications. By eating foods that restore your pancreatic enzymes, you would be able to properly metabolize all of the nutrients found deficent in autoimmune disease.

Nat

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Re: Sjogrens treatment side effects
« Reply #100 on: October 16, 2011, 11:59:23 AM »

gurs

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Re: Sjogrens treatment side effects
« Reply #101 on: October 16, 2011, 12:44:32 PM »
Nat,

So what about B12 injections? would they help on this?

thanks


Gursie
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

Nat

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Re: Sjogrens treatment side effects
« Reply #102 on: October 16, 2011, 01:15:13 PM »
Hi Gursie, sorry no go.

Putting B12 into your bloodstream without the ability to bind or transport it into your cells would not only not benefit you, a recent study from Norway shows it could cause you a great deal of harm.

Here is the study.  http://jama.ama-assn.org/content/302/19/2119.abstract?etoc

The study was a double-blind, placebo-controlled, randomized clinical trial in which nearly 7,000 adults took just the amount of folic acid and B12 you would find in maybe a bowl of fortified cereal and a multivitamin. This type of study is considered the "gold standard" of research designs. The study participants were followed for a median of six and a half years (39 months of active study participation plus 38 months of post-study observation).

The study showed those who took these vitamins had:

21% higher risk of being diagnosed with cancer (any type)
38% higher risk of dying of cancer (any type)
18% higher risk of dying of any cause

Since B12 is only one component of autoimmune disease, it would be best (in my opinion) to simply address the problem at it's source.

anita

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Re: Sjogrens treatment side effects
« Reply #103 on: October 16, 2011, 01:42:23 PM »
Sjogren's may be associated with B12 deficiency...so is lymphoma, yet very few actually have it.  Just because something is 'associated' with a disease doesn't mean all (or even the majority) of patients have it.  This forum is almost all people with Sjogren's, yet very few have reported a documented B12 deficiency.  It would be interesting to take a poll and see how many actually have a B12 deficiency.  And for those that do, whether supplements (even shots) didn't improve serum levels (meaning they cannot metabolize).  I think the numbers would be low.  I know for certain they would not be as absolute as you relay in your posts.

Gursie,

I too have gastroparesis and know it contributes to problems with absorption.  If your B12 numbers are high, why are you considering supplements?  Do you have other neuro problems?  I do believe what doctors think are 'normal' could be much higher.  I have read that a level of 400 should be the minimum for those with neuro problems. 
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

Nat

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Re: Sjogrens treatment side effects
« Reply #104 on: October 16, 2011, 02:21:10 PM »
According to a large study done at Tufts University, nearly 40% of the American population has B12 levels low enough to cause neurological damage.In addition, they tested the participants at a very low level- 258 pg/mL.  Here is some more information on the study.

"Recent research indicates that B12 deficiency is far more widespread than formerly believed. A large study in the US found that 39 percent had low values.[17] This study at Tufts University used the B12 concentration 258 pmol/l (= 350 pg/liter) as a criterion of "low level". However, recent research has found that B12 deficiency may occur at a much higher B12 concentration (500-600 pg/l). On this basis Mitsuyama and Kogoh [18]. proposed 550 pg/l, and Tiggelen et al [19] proposed 600 pg/l. Against this background, there are reasons to believe that B12 deficiency is present in a far greater proportion of the population than 39% as reported by Tufts University."

One surprising fact from the Tufts University study was that the participants in the study were eating foods rich in vitamin B12, but their bodies were not absorbing the vitamin.

I think there are two reasons people may be unaware they are deficient in B12. American medical opinion defines blood levels lower than 200 pg/mL as an indication of deficiency. This number is based on the most severe manifestation of a deficiency, which is pernicious anemia. (That is like having your engine light come on just as your engine blows up.) Physicians in Japan and other countries consider blood levels of 500-1300 pg/mL to be the normal range. If you are in the normal range in the U.S., you have a severe deficiency-enough to cause pernicious anemia.

Of critical note; 500-600 pg/mL is the level at which memory loss, lethargy and dementia can occur.

The second reason is taking supplements may raise your serum (blood level) but not your cellular level, which is what is important.