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Medical Forum / Diseases and Disorders / Lupus / September 2006Lupus meds
Hi everyone, I don't post much, try to read but I've been absent long time. :( My PCP found me a wonderful Rheumy, he wants me on Plaquenil but wants me to go for eye exam first because he said it could cause problems. I have seen the thread on this med, and I looked it up and it has sulfites in it, I am very reactive to sulfa so doubt I can take it, I am not wanting to add so many new symptoms to my long list <lupus is not my only dx>. My question is, do you know of something else that would help the joint pain? Thanks, Zinn Hey Zinn! how ya doin? I take methotrexate, which is an antimetabolite used for cancer chemotherapy. It is given in small doses for RA and for lupus... ask your rheumie about it.... Mair > Hi everyone, > I don't post much, try to read but I've been absent long time. [quoted text clipped - 13 lines] > Thanks, > Zinn Hi Mair, I knew you would answer <G> Oh gosh, I forgot about the methotrexate. I have in big red letters on my chart at doc NO CHEMO stuff, guess there isn't many choices. I have been better, been worse too, thanks for asking Mair. Hope your birthday went well! I saw J started the b-day thread, is she the next b-day gal here? The Rheumy said the Plaquilnel use changes eye vision, that colors would look different, I already see them different , so wondering if I would see normal, haha. I doubt I give it a try. As always its good to see you. hugs, Zinn > Hey Zinn! > [quoted text clipped - 23 lines] > > Thanks, > > Zinn Zinn, I don't think there is any way to know if you take it until you try. I think they start at a very low dose anyway, and it has to build in your system to be helpful. It could be your wonder drug. Are you color blind? That doesn't happen too often in females but it does happen. Bev > Hi everyone, > I don't post much, try to read but I've been absent long time. [quoted text clipped - 13 lines] > Thanks, > Zinn I will really have to ponder and talk to PCP on tuesday, I am very chemical sensitive, my disability was awarded for chemical poisoning/severe allergies. I often see the 'yellow' street lights as amber, if colors are mixed like a 'blue-green' I can't tell what it is, reds often look orange, things like that and after a bright day it takes my eyes long time to adjust. Thanks for your input, and yes the doctor did say small dose's to start. Zinn > Zinn, I don't think there is any way to know if you take it until you try. I > think they start at a very low dose anyway, and it has to build in your [quoted text clipped - 21 lines] > > Thanks, > > Zinn Hi Zinn, I too am sen to sulfa, but have been on Plaq. now for about 5 yrs with no probs. except going to the eye dr. every 6 mos to check my eyes, so far no prob.in that dept.Hope it helps with your question,Tina > Hi everyone, > I don't post much, try to read but I've been absent long time. [quoted text clipped - 13 lines] > Thanks, > Zinn hi moonlightonly, I am glad it works for you, can you tell me what symptom of lupus it releives for you? I think the fatigue and joint pain is becoming more than I can bear anymore, but now to add 2 more doc's to my schedule is overwhelming, we/I need less not more... I know all must relate to that one, this is a full time job. Thanks for responding, gives me more to work on. Zinn > Hi Zinn, I too am sen to sulfa, but have been on Plaq. now for about 5 > yrs with no probs. except going to the eye dr. every 6 mos to check my [quoted text clipped - 16 lines] > > Thanks, > > Zinn Hi again Zinn, the plaq. works with the pred. to I think keep the flares down and from the Lupus from attacting u inside, that is the best that I can explain,it from my point of view, it does help with the tireness as it starts to works and with the flares.As far as pain meds I take Ultram and valium for my legs and reqip for my legs too,Tina > hi moonlightonly, > I am glad it works for you, can you tell me what symptom of lupus it [quoted text clipped - 27 lines] > > > Thanks, > > > Zinn I take Requip too for Parkinson's, can't take ultram, do take xanex, aleve and tylenol <other things also>. Perhaps I do not have the type of lupus you do, Rheumy said it is the joint and skin involvement, and extream fatigue, so not sure of my insides unless a worsening happens, perhaps trying to avoid it, he was one of the nicest doc's I've been to, but did not take time for questions or show me test results, just told them to me. I will let you know tuesday evening what my PCP does. I am getting confused in this google format, posts do not appear like in the outlook forum. :( thanks for your patience and info, Zinn > Hi again Zinn, the plaq. works with the pred. to I think keep the > flares down and from the Lupus from attacting u inside, that is the [quoted text clipped - 32 lines] > > > > Thanks, > > > > Zinn >Hi everyone, >I don't post much, try to read but I've been absent long time. [quoted text clipped - 5 lines] >I have seen the thread on this med, and I looked it up and it has >sulfites in it, I am very reactive to sulfa so doubt I can take it, These may be as a preservative. Can your PCP find a different formulation, probably from another maker?  SignatureAndy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more! > >Hi everyone, > >I don't post much, try to read but I've been absent long time. [quoted text clipped - 11 lines] > Andy Taylor [Chair, N E Lupus Group] > See http://www.northeastlupus.org.uk for more! Thanks Andy, that is exactly where my thoughts are going too, my PCP keeps a very close eye on me and I've grown to trust him with my health. I see him Tuesday and will give an update, should have seen him on Thursday, but we had a tornado and most of our county did not have power and many lines and tree's down. :( Thanks, Zinn Wow, I didn't know you guys had tornadoes too. I guess swirling air can happen anywhere but I don't think I've ever thought about it happening much elsewhere. Did it do a lot of damage aside from knocking out power lines? Bev > > >Hi everyone, > > >I don't post much, try to read but I've been absent long time. [quoted text clipped - 22 lines] > Thanks, > Zinn yes, many trees down, big ones too. 2 tornado's came from Millwaki Wisconsin, straight down the middle of lake Michigan and hit hard, I am about 15 miles from the shoreline, I do beleive that never has tornado's taken this path. We do get tornado's but they usually come from the southwest. The experts still studing to see if it really was a tornado, duh, it was seen but not by the right people I guess. Zinn > Wow, I didn't know you guys had tornadoes too. I guess swirling air can > happen anywhere but I don't think I've ever thought about it happening much [quoted text clipped - 29 lines] > > Thanks, > > Zinn Oh, do I feel stupid. I was thinking you were in the UK for some reason. Still you do seem very north for tornadoes. We get one once in a while around here but not often and they usually only hit a neighborhood and do a little damage, power lines, roof shingles, sheds, and a few trees - once in a blue moon they really stir some damage. Bev > yes, many trees down, big ones too. > [quoted text clipped - 41 lines] > > > Thanks, > > > Zinn >Oh, do I feel stupid. I was thinking you were in the UK for some reason. We get tornados too. Unusual, though getting less unusual. SignatureAndy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more! Don't feel bad, I have to get my map out alot to see where things are, even in my own area! Zinn > >Oh, do I feel stupid. I was thinking you were in the UK for some reason. > > We get tornados too. Unusual, though getting less unusual. > -- > Andy Taylor [Chair, N E Lupus Group] > See http://www.northeastlupus.org.uk for more! a.. chloroquine (Aralen) a.. quinacrine (Atabrine) a.. are both anti-malarials that can be used in lupus. http://www.lupus.org/education/brochures/antimalarials01.html Are you taking any NSAIDS for the joint pain? If that doesn't work, I suggest you find a pain management doctor. A lot of rheumatologist will put you on steroids for joint pain. I refuse to go this route since pain meds are safer and I don't have to worry about the short/long term affects of the steroids. HTH Nicole crimsonshedemon at hotmail.com > Hi everyone, > I don't post much, try to read but I've been absent long time. [quoted text clipped - 13 lines] > Thanks, > Zinn [ >A lot of rheumatologist will put you on steroids for joint pain. I refuse >to go this route since pain meds are safer and I don't have to worry about >the short/long term affects of the steroids. Agreed, (almost) anything else is better. However I recall my wife's conversation with her doctor about steroid nose sprays. He: We don't want those nasty steroids, do we? She: It would be nice if I could breathe from time to time. SignatureAndy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more! Pulmonary doc said no steriods, but I would take a short round in a crisis, need it for poison ivy. Pharmacist said something of Quinine, I know that is awful and would change food and taste. I used to take Symmetral, but was told they stopped making it, was an antiviral. I have so many things I do not know where symptoms are from, I will look up the meds you wrote, thank you. Zinn > a.. chloroquine (Aralen) > a.. quinacrine (Atabrine) [quoted text clipped - 26 lines] > > Thanks, > > Zinn My rhem went to pred route for my pain and I now take 7.5 mgs a day and get a shot of it every 2-3 months. I know the risks and the side effects r not pretty, but it keeps me pain free and moving most days to do what I have to do,Tina > Pulmonary doc said no steriods, but I would take a short round in a > crisis, need it for poison ivy. [quoted text clipped - 39 lines] > > > Thanks, > > > Zinn I was 20 yo when diagnosed so there was no way.... if I started steroids then plus a shot every couple months, I'd have diabetes, need a hip replacement, etc. When my other drs found out what the rheumy wanted to do, they threw the fit of all fits. They're the ones that have to deal with all those lovely side effects (at least here) That's why I take pain medications so I can be pain and moving.... all without the side effects > My rhem went to pred route for my pain and I now take 7.5 mgs a day and > get a shot of it every 2-3 months. I know the risks and the side [quoted text clipped - 47 lines] >> > > Thanks, >> > > Zinn > Hi everyone, > I don't post much, try to read but I've been absent long time. [quoted text clipped - 13 lines] > Thanks, > Zinn Hey Zinn, For my joint pain I take Prednisone, I started on high dose and now 5mg controls it and I have hardly any pain. Hope this helps. Feel better Maureen Shortie, yes, it does help... gives me hope, I am glad you found relief. Zinn > > Hi everyone, > > I don't post much, try to read but I've been absent long time. [quoted text clipped - 18 lines] > Feel better > Maureen Hope I did not miss anyone, thank you so much for your input, I feel a bit better informed now when I go to the doc. Zinn > Hi everyone, > I don't post much, try to read but I've been absent long time. [quoted text clipped - 13 lines] > Thanks, > Zinn I started plaquenil in June and have done the first eye exam. According to my opthamologist, The dosage I am on which is 200 mg twice a day, it is very UNLIKELY for there to be any eye damage. The dosages used to be higher but the rheumys have now found that the lower dose works just as well in most cases but without the risk of eye damage. Just thought I would share the info I had learned. Janice in BC > Hi everyone, > I don't post much, try to read but I've been absent long time. [quoted text clipped - 13 lines] > Thanks, > Zinn Thats great, what does the med do for you, what symptom does it releive? The Rhumey did say he would start me out with very very small dose, like maybe just 2 times a week to begin, I was glad he understood my system reacts to meds when I start them. I am not comfortable though. My eyes are so bad already <sigh> At this point I have more questions than anything helpful, I have never been able to be a asset in this group as lupus is a mystery to me even though I have read much about it since my first confirmation of having it in 1999, mostly I just have forgotten about it, strange isn't it, then I get re 'validated' and forced to think about it again. Zinn > I started plaquenil in June and have done the first eye exam. According > to my opthamologist, The dosage I am on which is 200 mg twice a day, it [quoted text clipped - 20 lines] > > Thanks, > > Zinn Zinn, I have had sulfa allergy since 1950, almost died from not enougn air, swelling in face, etc. I have taken Plaq safely with no signs of allergic reaction for years. I think the sulphites in the Plaq are different enough that they don't harm us. O, and I know that my sulfa allergy is still active. In 2000 I had a reactin to Lasix, a diuretic related to sulfa. Plaq is an important tool and really helps many symptoms of SjS. It's JMHO, but I would look at Plaq as worth trying at least. SignatureNancy F , SoCal, USA Christ, Chorus, Cats, Computers : I have seen the thread on this med, and I looked it up and it has : sulfites in it, I am very reactive to sulfa so doubt I can take it, : Thanks, : Zinn I can't do lasix either, is Sjs a type O or is it for Sjogrene's? I have that too. Me thinks the majority of the people are encouraging me try the Plaqinel, thanks for input, gotta wonder though, I am 60 years old and I think most of you be younger, yes! good thoughts to all, Zinn > Zinn, > I have had sulfa allergy since 1950, almost died from not enougn air, [quoted text clipped - 13 lines] > : Thanks, > : Zinn Has anyone here researched "lupus like syndrome" which can be caused by statin and some hypertension drugs? It also can cause peripheral neuropathy and rashes and joint pain. Just thought I would throw that out there. >Hi everyone, >I don't post much, try to read but I've been absent long time. [quoted text clipped - 15 lines] > > >Has anyone here researched "lupus like syndrome" which can be caused by >statin and some hypertension drugs? It also can cause peripheral >neuropathy and rashes and joint pain. Just thought I would throw that >out there. This sounds like "drug-induced lupus"; at the last count there were over 200 drugs alleged to cause this! Nearly always, the symptoms disappear within 3-4 months after stopping the drug. SignatureAndy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more! Here is a abstract from the National Institute of Health, it always seems to get no notice, but really needs to be out in the public for all to see, every doctor I have given it to was extreamly interested. http://ehpnet1.niehs.nih.gov/docs/1999/suppl-5/723-727shaheen/abstract.html Again, I thank everyone for the wonderful list of helpful information. Tomorrow I will know more about how my other meds and health problems will affect lupus treatment. Zinn > >Has anyone here researched "lupus like syndrome" which can be caused by > >statin and some hypertension drugs? It also can cause peripheral [quoted text clipped - 7 lines] > Andy Taylor [Chair, N E Lupus Group] > See http://www.northeastlupus.org.uk for more! Well, here goes! I like and trust my PCP, he wants me to give the Plaquinel a chance, very low dose to begin and add slowly to the dose the Rheumy wants, so see a eye doctor on the 13th of Sept, then I reckon I start the med. Doc is all concerned now, duh, I was diagnosed in 1999 in Oklahoma. Thanks for your patience and support, I only wish I knew more of how to do and say right things for all of you, I know so little of Lupus. Its hard to figure out. hugs to all, Zinn > Hi everyone, > I don't post much, try to read but I've been absent long time. [quoted text clipped - 13 lines] > Thanks, > Zinn Zinn, Just remember that Plaquinel is the type of drug that has to "build up" in your system and sometimes it takes several months before you notice any change or improvement. I so hope that it works for you and that you are not allergic to it. We are all here to help when we can and just to give hugs when hugs is all we have! Lupus has so many different ways that it strikes that it not only baffles those of us who suffer but at times baffles those that are trying to treat us. Hugs, Sherry Thanks Sherry, I reckon I will just settle down now and know it may take a long time. You all have said just the right things to me, I hope I can give back something. hugs, Zinn > Zinn, > [quoted text clipped - 11 lines] > Hugs, > Sherry Zinn you really helped me when you reminded me that Plaquinel taken with prednisone makes both of them work better. Ran out Plaquinel and hadn't bothered to get it refilled. So thank you for your help..............big hugs ruth > Thanks Sherry, > I reckon I will just settle down now and know it may take a long time. [quoted text clipped - 18 lines] > > Hugs, > > Sherry Hi Ruth, gosh, I am not that smart, must have been mentioned in someone else's post. I sure am glad the topic also helped others. :) hugs back at ya!! Zinn > Zinn you really helped me when you reminded me that Plaquinel > taken with prednisone makes both of them work better. Ran out [quoted text clipped - 23 lines] > > > Hugs, > > > Sherry > Well, here goes! I like and trust my PCP, he wants me to give the > Plaquinel a chance, very low dose to begin and add slowly to the dose > the Rheumy wants, so see a eye doctor on the 13th of Sept, then I > reckon I start the med. Doc is all concerned now, duh, I was diagnosed > in 1999 in Oklahoma. Good luck with the eye test Z, hope it's fine so you can finally try medication to see if it will help you. I'll be lurking/reading and I'm sure the group will be looking to hear how you're making out with medication. Please keep us updated. Hugs to you. J- back to lurkdom |
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