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[user=268]Nico[/user] wrote:
he put me on Methotrex garbage made my hair fall out! I should of thanked him for that LOL the worst part he didn”t tell me what he was putting me on, he just said take 3 of these a week!, oh by the way take some folic acid with them !
Boy I learned that the hard way, everyone NEEDS to be involved with the Dr.Nico, so true! Just so sorry you had that nasty experience. I honestly feel like weeping when I hear stories like this. That kind of behavior is unconscionable – just plain lazy. There really should be informational handouts about medications listing all side-effects from the physicians with possible options for patients to choose from… Seriously, my dog got better treatment from her vet! When she was sick last summer, the vet printed out all this information on the various drugs she needed to take, not only telling me the benefits and side-effects of each, but asking me to read the information. She then said it was up to me to choose what I felt best for her.
Sometimes I think we're all at a crossroads in taking care of our health…one road with a sign pointing down the road where you can choose to be told by a physicians what to do – which some people actually do prefer – and the other sign pointing to the road where you can choose to find a supportive doc who treats you as a partner in your own health. Thing is, there is a choice…and if there isn't there should be. Why shouldn't pet owners get the same superior care that our animals are getting???
Peace, Maz
I'm definetley at a cross road ,all my Dr. are OK with it but my Rumey, he says I will have liver & kidney failure and I will most likley come down with Lupus!
Have you heard of anyone getting all these things from AP?
Well I haven't got any of those things that I know of, but my last PFT was not as good as it was before, it had decreased, the pulmonoligist that read it said that I have Mild pulmonary Hypertension! So Now I'm debating on going to see a real AP DR, My dr. now is just my Dermatolgist that has me on the minocin, he is way cool, but he doesn't know about IV or other Drugs that they use. He just put me on minocin cause I asked him to.
So I guess I need to go geta real AP Dr. I have been feeling so good! so who do ya believe!Nico
Hi Nico;
I was one of the dummies who listened to her doctor…..at the beginning of SD.Darned methotrexate nearly put me into liver failure and the pain from that made the SD feel good.That is when I got serious about finding some other treatmentI had liver enzyme tests done every 2 months but that was not often enough to pick up on the problem.
Thanks to AP I have my nice old boring life back again.Lynne,
And after I told my Dr. I took myself Methotrexe he said to me, well actually it works better for Linear Scleroderma. So what the heck did he have me on it for ? Lord these Dr. should experiment on them self before they try it on us!
Thats not good to do to your kidneys, I hope everything will stay fine with them. There pretty important to our whole health.
I see your from Ontario, I have alot of friends who live there. I go there a couple times of year to Toronto, in fact I'm going again next month in Feb. so pray for warm weather for me. I love Canada, one of the prettiest places you can go to. I have been to all your providence except for the Yukon Providence.Nico
Nico – I'd be pretty mad if I was you. Best thing you can do, IMO, is educate yourself. The New Arthritis Breakthrough has plenty of material on all this as does the Education section of the main http://www.roadback.org site. You might also want to look up side effects of the drugs your rheumy is proposing to put you on. Below is an extract from our main site on AP side effects and the link to the page.
https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-Side-2821
Side Effects
The tetracycline derivatives and erythromycin are both highly effective and safe antimycoplasma substances. It is characteristic of microbial hypersensitivity states that the proper use of antimicrobial agents is in general surprisingly free from drug complications unless the medications possess sensitizing properties or innate toxicities. It is of additional interest that mycoplasma, unlike bacteria, do not possess a cell wall, only a thin covering membrane. Thus, long-term exposure to antimycoplasma substances would not be expected to create mycoplasma resistance which is usually dependent upon cell wall enzymatic activity. In over five decades of use, no ill effect from medication has been experienced, except the emergence of delayed sensitivity as with all drugs in this field, but on a level that is very easy to manage.
The Drug Induced Lupus effect is considered by many AP docs as a possible Herxheimer response. And, in any case, if such symptoms arise, they remit when mino therapy is stopped…..and there are other drugs in the same family which may be considered.
A few studies have shown that minocycline can cause lupus like symptoms in some patients and the PDR states that IV and oral minocycline can exacerbate the symptoms of lupus in some patients. This may be a Herxheimer expression.
(find this at same link as above)
As for liver and kidney failure, well all I can say is that this doc really doesnt want you on AP does he? Maybe the best answer to that is to have a look at the American College of Rheumatology's own 2008 Guidelines for follow-up bloodwork on a range of DMARDS. I am attaching a pdf of it for you. Frequent bloodwork is required to monitor affects of toxic medications on the body. You'll notice that mino is listed by them as a DMARD. And no follow up bloodwork is recommended in this chart after baseline. What does that tell you about the relative safety of it compared to others on this chart? And you might also ask him why there are not thousands of teenagers going into liver and kidney failure after long-term use of mino for their acne.
Anyway, this is of course, if you feel like it….sounds like the proverbial brick wall. Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)[user=268]Nico[/user] wrote:
all my Dr. are OK with it but my Rumey, he says I will have liver & kidney failure and I will most likley come down with Lupus!
Hi Nico…what a gloomy rheumy! Actually minocycline-induced lupus is not very common. According to this British study,
“Overall, the event is uncommon but the risk and benefit of minocycline therapy must be carefully considered.”
http://www.blackwell-synergy.com/doi/abs/10.1111/j.1365-2133.2007.08056.x?ai=s4&mi=1r5w
Basically what this study is saying is that mino-induced lupus (MIL) is not very common, but that patients and physicians alike should be aware of this small risk of possibility. If I'm interpreting this study right (please correct me if I'm wrong), out of approx 24000 study participants only 2.64 people came down with MIL. That's roughly a statistic of 1 in every 10,000 people. Granted that people with existing “autoimmune” diseases may have some type of increased proclivity and the stats may be higher in these groups, but to tell you you're going to end up with MIL is really scraping the barrel of excuses.
Lynnie is right…if the risks were that high, then they wouldn't be putting teens on mino long term for their acne.
Nico, if you need an AP physician list for your state or you would like to travel to the most experienced, let me know and I'll send you a list.
Peace, Maz
PS This guy, Dr Mike, talks about Fragile X and minocycline and also comments on the 1 in 10000 risk of MIL. Pretty sure that was the stat I read a while back, too.
http://drmikespsychiatryblog.blogspot.com/2008/04/new-kind-of-practice.html
Well dear friend,I don't think you would want to be here right now.It is frigging cold and we should drop to -30 tonight.-30F is the same as -30C.Guess we will have to keep the water tap open in the sink all night to prevent the pipes from freezing and having a flood in the house when things warm up.High tomorrow of -24.and I think I will go crazy before it warms up on Monday.UG!!!
Yikes, Lynne, that's brass monkey weather (as the Brits say!)!!! We're currently at 14f, so not as bad you, but bad enough. I remember those kinds of days when we lived in Montreal and I would take my eldest off to school up to road with the baby strapped into a small sled, as I couldn't get my little car out of the driveway. The snow plow would go by when hubby was at work or traveling and leave heaps of chunky ice I couldn't shovel. Brrrr…. Last year, my brother had to get on the roof of his house in Ottawa and shovel off deep snow that he was afraid would cause it to collapse. In the spring, their living room ceiling fell in due to the melting and a leak that started. Anyone who lives in those climes have to be tough cookies!
Peace, Maz
maz, how do I change my post, there too much space after my message, I can't remember how to do the profile part
.Thanks
Nico[user=268]Nico[/user] wrote:
maz, how do I change my post, there too much space after my message, I can't remember how to do the profile part
.Thanks
NicoClick on “My Account” in the upper right area.. Then third tab over is “Profile”. Click on that.. Bottom field is your signature.. You have a lot of paragraph marks you just need to delete out.
Hope that helps.
[user=27]Maz[/user] wrote:
Tom, thanks for the help there! You're a sweetheart. 😀
Peace, Maz
Please! It's the least I can do!!
Lynne,
I have always said that Toronto is the coldest place on Earth in the winter.
My husband was there on business , I finally got him a flight home on the 8th, the very next day it started snowing, and temps dropped to nothing.
If you have raynauds how do you keep your hands warm ?
I need to thank all of this board for trying to help everybody with what ever,
It means alot to me. THANKS SOOO MUCH !!!!~!!~Lynne G,
Yikes I am with you -40 here tomorrow. right now -12 without windshield!!
We must be nuts living with these winters! I am so glad someone else is posting weather. Any chance I am getting(this makes 4) I am whining about how flippin cold it is.
Everyone else is saying Blah Blah Blah . They all have those great little saunas!!Stay warm and keep smiling! It keeps the joint pain away!
Happy & warmer days!
Patti
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