Concerns about Drugs

[missyb]

I meant to say possible side effects  I know it's not a sure thing you get lymphoma from Imuran, just the risk is increased.

[Jesse88]

Missy, what you said about being taken off the Imuran because of your Sjogren's really worries and confuses me.  My RD put me on Imuran just when he confirmed my Sjogren's.  I was having trouble with the MTX so Imuran was the next step, apparently.  The lack of consistency in treating autoimmune diseases really concerns me.  Many times I'll read of other doctors prescribing exactly the way my RD does, but other times, there will be a different approach.  I wish they could all agree on a proper protocol. 

[Billydude]

I'm also concerned about all the drugs and worry that different doctors are prescribing things without really taking note of if there are interaction problems.   Someone on another tread offered this website where you can list all your drugs and it will tell you if there are any interactions.   Now whenever I get a new drug I log it into this site and it will warn me if there is any problem.   Here is the link
Steve
http://www.drugdigest.org/DD/Interaction/ChooseDrugs/1,4109,,00.html

[kim31072]

Missy I would seriously talk to your prescribing dr because the med that they put you on is one of the KNOWN meds to cause DIL(Drug induced Lupus)...you will present with all the signs and symptoms of the illness until you are taken off the med and it is discontinued.

It is a drug I would want to be changed from or you could likely start showing symptoms not on of SJS but also Lupus.

Please read these links and call your dr

http://www.medicinenet.com/minocycline-oral/article.htm
http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutaffects.aspx?a=377&z=0&page=5
http://www.emedicine.com/DERM/topic107.htm
http://autoimmunedisease.suite101.com/article.cfm/drug_related_lupus

http://www.charter.net/google/redirect.php?to=aHR0cDovL3d3dy50aGUtaG9zcGl0YWxpc3Qub3JnL3BkZnJlZGlyZWN0LmFzcD9yPS91cGxvYWRzL2FydGljbGVzL1RISnVuZTIwMDhBcnRpY2xlMjU2LnBkZg%3D%3D&context=results.1&count=9&_LT=GRLK_GBARGLBLX_OGRSR

They have found that it can trigger an episode as early as 6 months or 2 years.

I would be having a serious talk with my dr...he should have told you that this could be a side effect of the med and in MHO not one I would want to risk.

Kim

[missyb]

Jesse, I wasn't taken off, I wanted off. My former rheum was satisfied with just calling it a non-specific autoimmune disease and prescribed Imuran several years ago. Despite the imuran and lodine I was still in a lot of arthritic pain and as I mentioned just had a strange achiness in the upper right area of my abdomen and also my middle back. I was concerned about what these medications were doing to my organs and the risk of lymphoma especially after my brother had it.. I did some more research this summer and went to a new rhuem. He  is the one who gave me an actual diagnosis and gave me a specific diet and also uses the antibiotic protocol which has worked wonders for me. Since I've been off the imuran I don't have that pain any more. Fortunately it is all working well for me. I'm not complaining about this mind you, but now the only real pain I have is in my feet and I figured out that it's from doing lunges at the gym. I was doing a lot and it kinda stretches your foot when you go down. I over did How far I've come from someone who just 6 months ago would have to limp around the house the first hour I got up!

Kim thank you for your concern but I am just doing fabulously with the regimen from my Dr who is a board certified MD who specializes in rheumatic disease. I have had none of the issues in these past 6 months.  The dose is the same amount and type that is frequently given for teenage acne. Though no medication is without some risk, it is much less caustic and risky than imuran

[missyb]

ps Kim, what makes you assume sure he did not discuss these things with me? 

[kim31072]

Because for me with AI issues I would not want to be put on a med that can cause the additional health issues this one does...if the antibiotic protocol works for you then that is great news for you and I wish you much success with it and the Dr you chose.For me (and again this is my opinion)I would not want to be put onto a med that causes the effects this one does.I am aware that it is the dose given for teenage acne...they also have the highest rate for DILE because of this drug.So its great it works for you..Im glad..I just wouldnt want to be on a med that could mimic an AI illness on top of the one I allready had and possibly cause more issues.

I wish you continued good luck.

Kim

[missyb]

There are a myriad of people who are doing just as well as I on this protocol so I am certain is not just good luck, but I appreciate your well wishes and wish you the best on your journey as well.
Since we are stating our personal preferences on medication risk taking, I came to the conclusion I'd rather run the risk of something like a temporary  DIL which is completely reversible once you stop the medication rather than permanently damaging my vital organs as well as increasing my chance of lymphoma. But that's just me. After what I saw my brother go through, I want to do everything I can to steer clear of that. I mean we definitely have it rough sometimes, but cancer is a whole nuther ball game, and I do not want to play 

[Jesse88]

Missy, thanks for the clarification.  I also researched antibiotic protocol and was "this close" to trying it because of my fear of the drugs I take.  I read up on it, discussed it online with "The Roadback" people and really wanted to give it a try.  However, when I discussed it with my RD, he became very concerned about my trying it and said it could be a great danger to me because it usually doesn't work and would give my disease a stronger foothold on me.  With your family history, I can certainly see why you would want to use a relatively benign antibiotic regimine instead of the drugs we are usually prescribed.  I know of many people (via the Arthritis Insight forum) who swear they've been helped a great deal with antibiotic therapy.  I'm glad you're doing well and wish you continued success. I have to admit, I'm still intrigued by it, but my RD really put a scare into me. 

Having said all that, would you please discuss the minocin/lupus link with your doctor again?  While doing my antibiotic protocol research, I read time and again that minocin is one to avoid for the very reason Kim mentioned.  There are other tetracyclene-related drugs you can use that will give you the same benefit without the lupus-link.  It surely can't hurt to ask him about it.  Please understand that Kim and I have nothing to gain by trying to get you to reconsider this drug.  We're not trying to freak you out.  (I assume she's not.  I don't even know her, LOL!) ) It's just a friendly caution to a fellow Soggie. 

[kim31072]

Nope Im not... ...just wanted to be sure that she was aware of this aspect of the treatment also...and if nothing else at least others on here who read her post are now aware that the antibiotic protocol using this specific drug also carries a risks(as they all do)I wouldnt want others to try this,not have a rheumy who told them about the risk and then up experiencing further worsening of symptoms and be led down the "you have SLE" road...lots of times people go off on their own and dont keep their drs informed and communicating with one another which in some instances could spell disaster.At least if you are aware the drug can do this...if it does your dr and you know where to look first.

I just wanted the side effects of minocin/minocycline treatment to be heard too...just like Imuran carries an increased risk of Lymphoma...this deserved to be mentioned too.

I completely understand her hesitancy and desire to be off Imuran and am glad she found a Dr she likes and a treatment that suits her.Hope her luck continues.Just wanted to present the other side of the coin.

Kim

[Epson]

A read a book about the drug industry that said if aspirin were invented today, it would be a prescription drug, not over the counter due to the possible side effects.  I use to try to stay away from drug as much as possible, because they all take a toll on our body.

But now we have the FDA setting standards on how much poison can be in our food and baby formula, growth hormones in milk and meets, salmonella in eggs and chickens.  What, shouldn't it be zero or near zero.  Then look at the harmful chemicals in your cleaning product tooth paste etc.  What about the poisonous chemicals found in medication that use ingredients from China (and we can't buy drugs from Canada because it might be unsafe ROFLOL). We are all doomed.

[Chana M]

Epson - you're the best!  We are definitely all doomed, as you say, but at least we've got each other for company on the way there!

It's hard to keep all this in perspective but you're a great help.  Of course we're all doomed but let's enjoy the good bits while we go.  Today the sun is shining here in Brighton, England after a night of storms.  The sea is a glorious aqua blue and I'm going to a friend's birthday lunch.  I'll be in a cold sweat because of drug side effects, and my hands are a shaky mess plus my walking is the pits.  But hey ....

Thanks again.

Chana xxx

[Epson]

Chana,

Are you sure you saw the sun?  Every time I have been to the UK it did nothing but rain, then again I am in Cleveland and we get scared when the sun comes out, because we see so little of it, we forget what it looks like.

[missyb]

Again, thank for your concern, but "she" was well informed by her rheumatologist who has been practicing medicine for over 25 years about the potential for any side effects, which are completely reversible *IF* they were to occur and are actually exceedingly rare among his patients. When I asked my former rheumatologist  about antibiotic therapy told me that minoncin only "puts you in a prolonged remission"..After I got home I thought,,,  hmmm well  a prolonged remission sounds pretty good actually! 
I feel great right now, if it lasts forever, that would be awesome. But even if it just  buys me time off the heavy meds, that's still awesome because it's less abuse my liver and kidneys have to take. I guess the fortunate side of Sjogren's is that our joints are not usually damaged by the arthritis as in RA so shouldn't be any silent damage going on while I try this..

I will add that my Dr told me that the very best medicine I can take is eating healthy, chemical and preservative free food and avoiding those things that trigger an immune response. The other thing is really keeping ahead of the water intake. I have to say that has been the most helpful advice along with getting consistent exercise. He runs a yoga clinic, I don't go there, but I just think it's cool that there are MD's out there who really focus on real health and your whole package, not just pushing pills, know what I mean?

[kim31072]

Sorry if female pronoun usage caused upset...I thought you were female based on your screen name...apologize for any confusion/upset.

Now I remember why I mainly lurk .Thanks for the reminder..