A friend of mine is trying to convince me that I might have drug induced lupus since I take blood pressure medicines which sometimes have that effect. I'm not sure what to do with her theory. Of course, I can go off the medicines and see if I am completely cured but how do I even know what symptoms are lupus and which are not and why would I go off of these meds? I'm a bit perplexed. I guess it could be the cause but I am very doubtful. In her case, she took a med and got a full blown case of lupus. My lupus was a lot more subtle than that and there is not a clear cause and effect because I don't even know when the lupus "hit". Any thoughts or ideas on whether I should follow up on my friend's theory?
Here is a link with information on drug induced Lupus, as well as a list of drugs that could cause it. I would discuss it with your doctor. In most cases, if they think a med could be causing a problem, there are other meds they could try in their place.
Had I been on one of those drugs when I got Lupus, I would have wanted to try going off of it. I was on absolutely nothing when I started having problems though - I was the healthiest person ever. Lol.
Good luck.
Sharon
This is something that should be left to your doctor Out of the 100s of thousands of drugs available only 38 are associated with lupus and only 3 are frequently associated according tothe Lupus Foundation website. It can be dangerous to just stop your medicines on your own either for your HTN or your lupus. You are never really cured of lupus although you can have periods of remission.
Not knowing what meds you are taking it would be worthwhile to check it out though
There are drugs that I am taking that could be associated with it but I did not just suddenly "have" lupus as far as I know and I am still not sure what symptoms are definitely from that. I would never just stop taking my meds - especially since the ones in question are blood pressure meds. I am very dubious about my friend's claim. In her case, she started taking a new medicine and suddenly had lupus. I have been taking one medicine at different doses for 20 years and the other for probably 10 but I just wanted to know if anyone had any experience with this phenomena.
I don't know anyone with drug induced lupus, so I have no personal knowledge at all. According to the Lupus Foundation of America (the link I posted above), it usually takes months or even years of being on a drug before symptoms of SLE appear.
Your best bet is to discuss it with your physician if you are at all concerned about it.
I kind of feel like I am between a rock and a hard place. It COULD be from the meds but how could we even prove or disprove that? At this point, my ANA is ok because of being on all the meds to control the lupus and arthritis. I happen to think it is highly unlikely to be from that and, in many ways, resent my friend playing doctor and pushing her theories on me (she already does it to her poor doctors). And I know that sometimes we do have to push to get doctors to figure out what is wrong but I hate to play with my blood pressure meds which are fairly low doses and working well. I guess my issue is should I listen to my friend and give her theory any credence when no one else even considered it.
Hello Lynn,
I found this fantastic web page on yahoo answers.com the link is below. I just went ahead a copied the whole page for you. I hope this helps.
debbie
http://answers.yahoo.com/question/index?qid=20110107191441AAz2cXG
Here is a list of the most common drugs that cause Drug Induced Lupus:
http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutindividualized.aspx?articleid=377&zoneid=18 http://en.wikipedia.org/wiki/Drug-induced_lupus_erythematosus * Alferon N
- Carbamazepine (Tegretol)
- Hydralazine (Apresoline)
- Inerferon Alfa
- Infergen
- Intron A
- Isoniazid (INH)
- Methyldopa (Aldornet)
- PegIntron
- Phenytoin (Dilantin)
- Procainamide (Procan, Pronestyle)
- Quinidine (Quinaglute)
- Some anti-seizure medications
Read more at http://www.wrongdiagnosis.com/l/lupus/medic.htm?ktrack=kcplink Although as many as 100 drugs have been reported to cause DRL, most cases are caused by the following 4 drugs: procainamide (Pronestyl), hydralazine (Apresoline), minocycline, and quinidine (Quinaglute). With these 4 drugs, the risk of developing DRL after 2 years of drug use is 5-20 percent. With the other drugs reported to cause DRL, the risk is less than 1 percent.
Drugs with a definite association to DRL include: chlorpromazine (Thorazine), hydralazine, isoniazid (used for tuberculosis), minocycline, methyldopa, and the heart medications procainamide and quinidine.
Drugs reported to have a possible association with DRL include: the beta-blockers propranolol, metoprolol, and atenolol; captopril; the anticonvulsants carbamazepine (Tegretol), primidone (Mysoline), ethosuximide (Zarontin), valproic acid (Depakene, Depakote), trimethadione (Tridone), and phenytoin (Dilantin); hydralazines; interleukins; interferons; levodopa, tumor necrosis factor (TNF), tiotropium bromide inhaler, ophthalmic timolol, lithium; the anti-thyroid drugs methimazole and propylthiouracil (PTU); the chelating agent penicillamine; the antibiotics nitrofurantoin, sulfasalazine, and sulfonamides.
Drugs reported to have an unlikely or very low association with DRL include: allopurinol (used for gout), chlorthalidone and hydrochlorothiazide (diuretics), gold salts, griseofulvin, methylsergide, oral contraceptives, lovastatin, minoxidil, perphenazine, penicillin, phenylbutazone, reserpine, streptomycin, and tetracyclines. http://www.lupusalliance.org/content.asp?id=312
no no no..do not go off with out your doctor involved. I just read interesting story in health letter about that the old bp medicines actually are better...have no side effects easier on body. One they kept talking about started with Minoxidil...i am pretty sure it was this one. Just tell your doctor that it was one of older drugs originally used for high bp and has no bad side effects.
Which might be positive for you period...but here is my question has doctor diagnosed you? If so..than has the doctor gone over all the drugs you were one prior and taking still now. By prior if there were any you stopped recently but had been taking for long period of time..at least 6 months. Your doctor should have checked this out, i would hope. But it would not hurt to ask them and make sure it is not from one of your drugs.....i mean it would be wonderful to be able to stop symptoms if it was just a drug!!
hope it is just a drug to make your life easier!!
I never said I would go off any medication. All I might do is ask the doctor about my friend's theory. One of my blood pressure medicines is Methyldopa which is ancient. I started taking it almost 20 years ago when I was pregnant with my son. Eventually, the dose rose and though it took a while, the doctor made the connection that my dry eyes, mouth, nose, hair, skin could be connected and cut it way back and added in another blood pressure med. Both the meds are in the less associated with drug induced lupus list but they are there.
Has the doctor diagnosed me with lupus? Yes, that is where the diagnosis was from. He (the rheumatologist) ran an ANA on my first visit because of the severity of my arthritis and when the results came back, he said it resembled RA and lupus. I was put on Plaquenil after the ANA results came back. I honestly had never heard of lupus but it turned out that I had a lot of the symptoms from "the list". Several visits later, I had gone from the maybe category for lupus to the definite category in his book.
I just started seeing this doctor at that time so the only new drugs are things related to pain control, the doubling of the arthritis meds and the Plaquenil. I brought that doctor a list of all my meds and all the doctor visits and lab results including even MRIs. And, I agree, it would be great if I stop taking drug A or B and suddenly some symptoms disappear BUT I am not sure which are even my lupus symptoms except for the rashes. My lupus lists includes nose ulcers/rashes (these were really puzzling the doctors and specialists for quite a while), a very light version of the butterfly rash, severe arthritis, the "right" kind of results on the ANA and protein in my urine (which could be a result of meds).
My fingers are hurting so much (new symptom) that I am seeing the doctor about that - this is my internist and I have an appointment with the rheumatologist soon also but unlike my friend who had a very sudden case of lupus after some new med was introduced, these symptoms have appeared gradually over time and would be hard to pin down easily (I think). The nose ulcers did start suddenly many years ago but there were no new medications, I don't think but that would be easy to check because I got that ulceration something like 16 times in two years so it was well documented.
I am a living proof of Drug Induced Lupus. Or am I? I woke up one September morning with Psoriatic Arthritis. Two years later and various medications, I developed a rash while on Humira and Sulphasalazine. The dermatologist feared Lupus, but was afraid to diagnose, given the PsA. (research has doubts that the two can coexist, because many of the prescriptions mimic Lupus) After several skin biopsies (dr. wanted to be really sure), the diagnosis was Lupus. I had read and suggested the Lupus Like Syndrome instead. The dr. changed his diagnosis to it. I chose be on denial. I was off the meds for 9 months and it did not make much dent on my symptoms, just nearly killed me the experiment. The Rheum dr. just "doesn't know" why my heart, lungs, pancreas, and liver are so busted because he still insists that the two diseases cannot coexist. Still, I prefer being on meds than without, being able to smile once in a while.
I had to register myself to the FDA as DIL, side effect of Humira.
I am so sorry to hear that you have drug induced lupus. I thought though that it goes away when the drug is taken away. Is that not the case? The fact that you woke up one morning with PsA sounds like it could be drug induced too as the onset was so sudden. Are you still on the Humira?
My dr. thought so too but no, my "Lupus" did not go away. I think I really do have PsA. (an indicative seems to be to wake up one day and it be there) My hands and toes have and continue to swell up as "sausage". My x-rays show the joints juxtapositioned. My Rheum dr. happens to do research in the PsA field.
No, I had to stop the Humira and Sulphasalazine for life. My dr. says I may never go in remision. But, that is not up to him. God always says the last word. Meanwhile, every day and night is precious. Every moment to be treasured. I have mourned my health for far too long. I am in the acceptance and adapting process. I have stopped looking at the things I cannot do and concentrate on the ones I can still do. Those I find out I cannot, I try to look for ways to manage them (adapting).
I spent time, money, and headaches trying to get a valid diagnosis. Went to Mayo and Cleveland Clinics and all I heard was "I know there is something wrong, I just don't know what it is." Now, I am searching for peace of mind. The two roads to get to my house's names are Peace and Quiet. Funny, but true. Life is a matter of perception. Peace is acquired within the soul. Every accomplishment is a victory. So many doctors say that I have defied death so many times. I thank God, for every problem is nothing but an opportunity for God to glorify His name in me. And I'm fine with that.
One thing bugs me is doctors who are negative....they do not know if you will go into remission or not...just like you stated. I am so happy that you have a positive outlook as time and time again that has been power!
I am sorry it sounds like complicated and atypical case.... you might go on psoriatic support group site here Ben's Friends and ask people over there.
wish you best in finding a solution!
I am there. Thanks.
siskiyousis said:
One thing bugs me is doctors who are negative....they do not know if you will go into remission or not...just like you stated. I am so happy that you have a positive outlook as time and time again that has been power!
I am sorry it sounds like complicated and atypical case.... you might go on psoriatic support group site here Ben's Friends and ask people over there.
wish you best in finding a solution!
I try to be nocturnal as much as I can to avoid sun.
Ann A. said:
The activity level of the lupus with which I have been living is low enough that I do not need any lupus medication. The side effects from the Plaquenil are worse than the lupus symptoms, so I stopped the med. As long as I remember to avoid sunlight and other known triggers I appear to be in remission. I am saying that with my fingers crossed and knocking on wood.
I get to worry about my blood pressure and my cholesterol levels and what most 66 year old women worry about. If I had known this was possible I would have worried about those things when I was younger. Truthfully, I never expected to live this long. I certainly never expected that at age 66 the activity level of the lupus would be so very low.
Stay optimistic.
Hello Lynn,
Sorry i'm late replying to your thread and i've been reading your replies...if you want my advice leave well alone with what your friends saying you could harm your body more by pulling off your meds which have helped you for so long.
DIL is a rarer disease in itself than Lupus...yes you have it, some members are born with it, some member's it's developed through giving birth to their child and otherwise it's just occured out the blue but i did a discussion on Lupus, fibro and Lyme disease they're all gene related from the same organ and it only takes something to kick the gene off more just the same as Cancer...then you have it more active in the body.
Here's the discussion i did on all 3 diseases being the same Gene related if you want to read it.
http://forum.lifewithlupus.org/forum/topics/the-gene-link-for-lupus-fibromyalgia-lyme-disease-cfs
What your main hope for in life is being on meds which suite your lupus besides the correct dosage to help you besides meds in the same way with what you have otherwise and i read what you suffer and those are Lupus related symptoms.
I'm not being ignorant but if this is how your friend reacts plus also with doctor's she does'nt know the extent to what degree of harm she may put on her body.
All my love Terri xxx