Hello to all members here. I usually post on the heart disorder board, as I have heart disease (duh, lol).
Let me say that I feel so sorry for all of you who suffer from this terrorizing disease. I think I have had drug induced Lupus for almost 2 years. The drug is (was for me) atenolol which is a beta blocker that lowers BP, reduces the force of the contraction of the heart muscle, and reduces the heart rate.
It is one of a couple of beta blockers on the list of drugs that can cause drug induced Lupus.
I believe it started when a rash developed where a man would least likely want a rash. I went to my urologist immediately and was afraid it might be cancer. I knew it could not have been an std.
He looked at the rash and would read my chart and said almost any one of these many medicines you take can cause a "drug induced rash". He asked me to stop one of the drugs he was prescribing, an antibiotic (one daily for an indefinite time, for chronic prostatitis), and he prescribed a very powerful cream for the rash. I would use the cream but the rash kept coming back. It would wax and wane kind of.
The Lupus symptoms had started a while before the rash appeared. I ached from head to toe. Muscles and joints. I had severe fatigue and overall chronic pain and depression from the pain.
I could find no traditional mds to help me, so I went to a naturopath. He did extensive blood tests (Mayo Clinic Lab) and found that I had some blood irregularities, i.e. low B-12 but most importantly I had what is know as "reactivated Epstein Barr Virus".
So to try to shorten this book, I went to an infectious disease doctor who diagnosed me with chronic fatigue syndrome, CFS. I went to a rheumatologist and was diagnosed with osteoarthritis, arthralgia and Fibromyalgia. This was late last summer.
I had a heart attack and light stroke in 6/28/2003, so I was in and out of hospitals due to coronary artery blockages during this time. I will have bypass surgery probably before the year is out, or early 2008.
Anyway about 12 days ago, I somehow stumbled over a list of medicines known to possibly cause drug induced Lupus. My health had got so bad that I was sleeping 15 or more hours a day. When I found this out, I contacted my cardiologist and he changed me to another beta blocker immediately. It has been 12 or 13 days since I have stopped the atenolol, and I am slowly but surely recovering I cannot believe what happened to me.
I feel so sorry for you guys. I know that sorrow does not help you but I believe you all are truly champions. If all the world only knew of the suffering.
I just wanted to relate my story and if you suspect that a medicine you are taking my be causing DIL, which is probably rare, just do a search and you will find a list of drugs that can induce Lupus. I do not believe the ANA is positive in DIL.
Dear Huckfinn, I'm glad you got yourself turned around. Awful process, isn't it? But eye-opening, as you say. I can identify. I went for years with problems, but I had a negative ANA despite being positive for anti-Ro. Like you, my EBV was thru the roof, and I was B-12 anemic; and over years, I was given the same Dx'es you list. Unlike you, I wasn't taking any meds. I was finally Dx'ed with the SCLE "subset" of lupus.
My sister-in-law went thru something similar to what you did, with a cholesterol lowering med. None of her autoimmune tests were positive. She had rashes. Her standard bloodwork was off on tests measuring inflammation. Tellingly, she improved after stopping the drug. I'm not sure whether she got a "definitive" Dx of DILE, but her rheumie still leaned to it after the dust settled.
I think ANA *is* actually positive most of the time in DILE. But perhaps ANA results fluctuate, depending on when blood is drawn, what lab does the labwork, etc.? (I have no idea & am only wondering...)
Some telling aspects of DILE vs. SLE (from mainstream sources):
* ANA & antihistones are almost always positive in DILE (as often as 95%+)
* anti-ds-DNA is rare in DILE (instead it points more to SLE), while anti-ss-DNA points to DILE
* C3/C4 is normal in DILE, vs. depressed values being common in SLE
* Raynaud's & cutaneous problems are seen in about 25% of DILE (but, of course, are also common in SLE)
FYI, Dr. Daniel Wallace covers DILE in his lupus hardcover, found in most libraries & bookstores. Another excellent lupus author is Dr. Robert Lahita. The weirdest thing I saw in the DILE sections in these books is that odds for some of the tests listed above VARY by drug---as if Dx of any form of lupus, including DILE, weren't difficult enough already.
I'm sure you've made sure that your reaction to the beta blocker is now a permanent part of your medical history. Did any of your drs. say that your reacting to this drug means that you may be more likely to react to some *other* drug? Just curious... And maybe that's something medicine doesn't yet know, one way or the other...?
Anyway, I wish you the best of luck in your upcoming bypass surgery. You take VERY good care, OK? Sincerely, Vee
VeeJ thanks so much for your response You are extremely intelligent, and since I have been reading some of the post and stickies, I have found many intelligent folks here.
Let me first tell you that I have had no testing concerning the DIL. Once I saw atenolol on the list, I almost knew it was causing it. I am still feeling better, but not as "better" as the first few days after changing beta blockers.
I don't know how familiar you are with the drug class of BBs, but they are very potent heart meds that cause fatigue in many who take them. So, it is hard to tell what is bothering me the most, lol. My knew BB may be starting to show side effects, mainly fatigue, which could very well get better.
I have some degree of heart failure from the heart attack and CAD. The failure is in the form of diastolic failure and hypokinesis of my left ventricular wall. My left atrium is enlarged and I have a leaky mitral valve.
I know that my activity is limited by my heart, to some degree. I have pain due to diagnosed osteoarthritis and if Fibromyalgia is real, I have been diagnosed with that, and chronic fatigue syndrome. My EBV titers on each test I have taken in the last 2 years show the chronic reactivation of the EBV, big time.
When I first saw my rheumatologist last year, my knuckles were really swollen and red. I could hardly use my hands. He did a lot of blood work, and most everything was normal, except for my IgA, IgM and IgG which were all below the low reference range.
The infectious disease doctor had previously found the same, which resulted in him doing some highly sophisticated blood work (per him, lol) which said it was ok for me to have these 3 low IG levels, lol.
My rheumatologist is very intelligent, but pushes his "trigger point" injections into my lower back, The cocktail is mixed; prednisone, lidocaine and something else I think. I could be wrong about the lidocaine......Anyway the first shots helped and then they began to do nothing. I stopped seeing him, but I think I need to get an appointment with him soon for more blood work and imaging of my lower spine! My back is killing me.
I am a doctor's nightmare. So many of my symptoms overlap, my diagnoses treatments tend to interfere with heart disease and I react totally strangely to medicines. The pill forms of corticosteroids (methaxxx?, prednisone) that come with the 12 or whatever day dose pac, make me totally psychotic and my intestines feel like I have ate barbed wire, lol. Seems I can tolerate a shot of prednisone in the muscle without the extreme effects as the dose pacs.
Thanks so much for all of your information and kindness. I have read for an hour or so here, but still wonder if my ANA might show up + on a repeat(ed) test(s)?
Again thanks so much for your reply. I regret mine being so long and wandering I threw down so many diagoses and symptoms in hope that you might see a pattern, other than the need to just go ahead and get ready for the long dirt nap I have to hold on to my humor. Nothing can take that away
My best to you,
P.S. I printed out your above reply for study material......
Another question.....I have small sores that always appear with scabs (sorry) on my lower arms and scalp. The ones on my scalp really itch. I just thought this may be of some meaning to you, Dr. VeeJ
Last edited by huckfinn; 10-14-2007 at 10:35 AM.
Reason: Additional info
Huckfinn, I just wish I did have medical knowledge! I'm merely a patient.
I *think* IgA, IgM, and IgG are immunoglobulins that play key roles in the immune response. I don't know what deficiencies mean; or whether each deficiency possibly correlates to some set of symptoms &/or conditions, which would be VERY interesting indeed. Or what might cause such deficiencies. e.g., condition(s)? Genetics? Long-term antibiotic use? Steroid injections? Any other meds you've taken? Etc.
For my first appt. with a rheumie, I was asked to prepare, in my own words, a lifelong medical history in chronological order. Maybe patterns would emerge. I don't think a chronology can prove causality; but a good diagnostician could maybe see something useful based on facts of which he wasn't previously aware, or maybe had pictured in the wrong order.
Usual behavior can bring unusual new results, too. For me, it was sun exposure, which had never bothered me in early life. By the way, I think some *heart meds* can make people highly sensitive to sun. Your drug printouts should contain such warnings, if applicable.
In your shoes, with such chronic lower back pain, I'd definitely go in for whatever bloodwork & imaging is recommended.
My male relatives have battled lower back pain, prostatitis, and BPH. And I know all feared prostate cancer; what man wouldn't? But they went in for their periodic urology checkups like troopers. i.e., it's so important to keep up with all standard checkups, too.
Have you seen a dermatologist for your skin problems on lower arms & scalp?
In your shoes, I would prepare that chronological list, figuring it can't hurt; and then keep updating it. Include copies of test results. Put it all in a binder & take it to appts. And see drs. who will communicate with one another as required. If possible, use a single pharmacy, so all your drug info is in one data base. Also include med "freebies" your drs. give you.
Full disclosure ( ): I had my ever-expanding binder, and it nearly pushed my GP into early retirement, or so he claimed. My breakthrough was my changing to a teaching hospital rheumie, the one who requested a short chronology--- which I, of course, was able to deftly compile in record time. He LOVED it: an attentive readership of...yes, one!
I hope something here is of some help, and I hope you just keep at it. Best wishes. Hang in there. Sincerely, Vee
VeeJ Thanks so much for your help. I just made an appointment with my rheumatologist for 11.08. I am going to ask for all the testing again and and MRI for my lower spine.
At one time I knew what the immunglobulin deficiencies meant, one was leukemia. They go further with other tests to rule it out (or not). Lymphoma is another. I do not like having the "reactivated EBV virus" (very high titers.) They are testing treatment of the stubborn, reactivated EBV virus with what appears to be dangerous viral medicines that are also used to treat HIV. I am not a risk taker
Thanks so much for your time, patience and information
Hi, Huck. I hope your rheumie runs ALL available autoimmune tests, meaning not just ANA. Some drs. wait for it to turn positive before ordering the more specific ones, meaning ds-DNA, ss-DNA, anti-Ro, anti-La, anti-RNP, RF, etc. Ordering all at once may prove enlightening, some experts say, and cut to the chase.
There have been widely publicized instances of famous men in their middle years having flat-out SLE but not getting a Dx. I'm NOT suggesting this applies to you; ONLY a rheumatologist can divine such things. But it seems to make sense, at least to me, to follow through on everything in the rheumatological ballpark. You just want all bases that seem even somewhat possible to be covered thoroughly.
Glad you're getting that MRI, too.
My then-GP never tried to treat my high EBV. He didn't believe it could be treated, even by a virologist, but that was in 1997. It doesn't weigh on my mind, ONLY because I had lupus identified as the "single bullet theory" and because Plaquenil has helped a lot.
May you get to that point of things falling into place, ASAP! Best wishes to you, Vee
Good luck with your 11/8 appt.
Last edited by VeeJ; 10-15-2007 at 09:18 PM.