Hi everyone,
Just a quick question. How concerned are some of you about the side effects of the drugs you are taking? My Rheum dr. keeps telling me that the drugs are too dangerous to take and doesn't want to give me anything. Are they that bad? I have done research, but you know how that goes, always worst case scenario.
Thanks
Designer
I think it's a trade off, but my doc. begged me to go on Plaquenil telling me it's an old drug that is pretty safe as long as you keep a watch out for adverse effect.
If I were you, I'd get another opinion to prove/disprove his treatment decisions.
Janna
Hi Designer
I understand the fear of taking drugs in case of side effects. My rheumatolologist decided I needed Celebrex, as I was in terrible pain and the NSAIDs triggered my asthma. Anyway, it took me a couple of months to finally try the Celebrex, as I was really frightened of upsetting the chest - thank God I did, it was wonderful to become pain free. I've not needed any of the really serious drugs, but I have worried about taking hrt/antihistamines and amitriptyline because of my previous history of epilepsy (many years ago), yet on balance I decided to take them, as I need to be able to get on with life.
I think the only thing any of us can do is balance benefits and risks and hope for the best.
Kathys
Hi Designer :)
I'm out for quality of life rather than quantity of life! So saying - I'm in my mid fifties. I don't function well when I'm in pain so I'll do pretty well anything to minimise that.
I wouldn't take a drug that made me feel sick - but as long as one doesn't - I'll take it until it does!! Plaquenil makes some people nauseous but I tolerate it fine, so I take it. I've never been offered any of the 'heavy duty' steroids.
Take care - Scottie :)
Hi Designer,
My rheumy also begged me to try it being concerned as to why my SED rate just jumped, and there was no easy answer. Am I afraid of taking all of these drugs? Yep, but I also know that I wouldn't have any quality of life if I were still in that sheer exhausted/brain fogged place; I'd rather take that risk, then stay were I was. I'm with Scottie, the quality of life is so much more important than possible side effects (within reason that is! ;)).
Take care -
Patze
So Patze,
The meds you are on actually help with the fatigue/brain fog? I thought maybe I was depressed and have been blaming the forgetfulness and inability to focus on age, 52.
I am actually getting a little scared about my memory. One week ago I threw away my birthday card with tickets in it to go to a concert. I know that can be normal, but its not like me at all. My family is noticing it so much too. Getting more than a little embarrassed about the whole thing. :-[
Designer
I am experiencing the same thing, Designer.
I've noticed it for the last several years, but now my family does too.
Plaquenil has helped me with nausea, joint/muscle pain, and fatigue....but I don't think my memory/thinking has improved. This is the scariest part of it.
I'm going to try SAM-e on low dose (as soon as I get to town to shop) because others here have found it helps them.
I'll post about it in a couple weeks.
Janna
Hi Designer :)
Please make sure your thyroid is OK. Also - ask for copies of your blood results. If your TSH is at the top end of the normal range - that could still make you feel ill. Deep depression and severe brain-fog are classic hypothyroid symptoms and docs often brush them off as 'time of life events'. Do check it out.
Take care - Scottie :)
Your question is one I've agonized over and over again. The thought of being on these toxic drugs for the rest of my life truly frightens me. But the truth is, I have no choice. I don't know for sure there will be any long term problems from the drugs, but I do know for sure there will be many problems if I don't get and keep my disease under control. So in a nutshell, it's weighing the risk vs. benefit for each of us. If my disease was mild and not progressing, I would hesitate to take any medication with the potential for harm in the long run.
I hope this helps. I understand so well the concerns you have.
I can see this has been a really tough decision for many of you. It breaks my heart that you have to choose between quality of life and possible risks. Until safer drugs are found I guess we do what we need to do.
Hang in there everyone!
Designer
Hi DesignerS,
I understand your fear, I've been there and it still sometimes make me wonder...hang in there, it does get better.
About the brain fog, oh yes, I'm having issues with it again and I sure know about the embarrassment of it all. I know that my TSH is under 1.00 so that's good, but I have no idea why it's become an issue for me again. I did ask the neuro, but he didn't seem interested; too bad, as it's a big deal for me as I still have to work and pay the doctor bills! On to find a new neuro.
Hopefully your doctor will figure out why it's occurring for you soon!
Patze
I've been there, heck I'm there right now. I'm recovering from an ulcer caused by my NSAID use. I guess my rheumy gave me an old one that can cause serious stomach issues.
I've found, it's better to try and have a few issues and keep trying until my docs get it right. It's probably the only reason why I'm not completely miserable right now.
Nathan - Sorry to hear about the ulcer. Which NSAIDs were you on? Has the rheumy moved you to a different sort of pain relief?
I love the notion of not being 'completely miserable' right now. Is this on a scale of 1-10? Or a percentage? Maybe we could invent our own measure for misery?!
Chana x
I was on Etodolac (Lodine). It was weird because it sort of came out of the blue, I dont have stomach problems with hardly anything.
I haven't called my rheumy yet, but I need to.
I like the idea, we need a new scale hah
Oh yes, this was really getting scary for me. I was on Imuran for 3 years for a non specific autoimmune condition.. I had constant pain in the kidney area, and also in the area of my liver.I was very concerned about what it might doing to my organs I knew when I was given the imuran that it has a lot of side effects, which included lymph cancer, last year my closest brother had lymphoma :'(, so that made me even more nervous. But when I was given a firm diagnosis of sjogrens, I had to get off that stuff because of the increased risk of lymphoma of just having sjogren's! So I am off the imuran and on minocin, and doing well with it.
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.
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.
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
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
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
ps Kim, what makes you assume sure he did not discuss these things with me? ???
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
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 ;D
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.
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
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.
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
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.
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! ;D
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?
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 :-\ :-X :-X :-X.Thanks for the reminder..
If it makes anyone feel better, Plaquenil is one of the safest meds out there for treating Sjogren's, Lupus, etc. I have actually read articles that its even also been researched and found to lower your risks of cancer... double bonus :)
My fear is the Pred I'm taking. I think about it everyday. I'm on a low dose but my rhuemy has not decided when I will come off of them. It's really scary when you read all about the horrible things it does to you.
I take Lodine too and not sure if it even works that well or not, I think the biggest frustration is when you take a lot of meds... well, you don't know what is helping and what is not and you start thinking that some may be be unnecessary and your overmedicating yourself... or at least I think that, all the time.
dbab, for what it's worth, my sister has been on Plaquenil and low dose prednisone (5 mg.) for nine years with no ill effects. But she did have a problem with Ultram (seizures) which made her re-think all her meds. She's now down to 200 mg. of the Plaq. and only 2 mg. of the prednisone and wishes she had tried to cut back earlier, since she's doing so well. My point is, I think every once in a while we have to try to cut back, very carefully and slowly, with our doctor's guidance, to see what we can change in our regimine. It's possible my sister was taking much more medication than she needed for many years, but didn't know because she didn't want to mess with the status quo. Of course, there's always the possibility of going into a major flare from cutting back, which is why we have to tread so carefully. It's something to think about though.
I had no choice about going on medicine, I had been suffering with all of this and my RA since I was a teenager but wasnt diagnosed until I was 30. Whether or not I wanted/needed/could stand/side effects..etc...I had to.
I do worry though because I am only 34 now and I take so much medication it isnt even funny. Seriously every night I take 18 pills a night and on Saturday I take 25 because of my Methatrexate medication for my RA. I know I have this SJ disorder as well and I worry about my organs failing next. I cant help it, Im a worrier.
However, if you are in extreme pain and you feel u need it and he wont even think about it, I would suggest to you to see another doctor for a second opinion.
Good luck!
Cortnee',
I'm a worrier too. Several of us on here are. It sucks.
I agree with you about getting a second opinion if medical care doesn't feel "right."
Best to you little one (I can call you "lttle one" cause you are so young and I'm old enough to be your mom)!
Janna
Janna...Little one works for me, I dont mind. I have several mom figures and I am gratefulfor everyone! [/color][/b]
Cort!
I just knew I was going to like you!
Janna
*blushes* thanks Janna!