View Full Version : tired of being sick....and cymbalta
12-07-2009, 10:15 AM
so everytime i mention to my drs im still having symptoms all they do is up my pain meds. they arent giving me anything else to control my disease process. i have been on plaquenil 6 months & i still have rashes,ulcers & cns symptoms(dizziness,headaches and neuropathic symptoms(burning,tingling & vibration sensations which are patchy like vasculitis) with neg tests and autonomic symptoms(intermittent elevated heart rates to 100-180s, shortness of breath,mottled redness on hands,flushing identical to my photosensitive rash etc. just to name some) I also very recently(this past week) have had trouble seeing at night when I drive and when I got out of the car it seemed like I was leaning to the right and couldn't keep my balance too well but it eventually went away. I have also had this intermittent shooting sharp pain go from my head to my shoulder blades almost down my spine. It makes me cringe when I feel it it is very intense. my dr said lets try and see if the cymbalta helps b4 trying anything else..that wont control my disease! i flare every month still..? .....as for cymbalta...has any1 taken it and how r the side effects? does it work for headaches/depression/brain fog?
12-07-2009, 10:20 AM
I forgot to mention I have been tested for fibromyalgia and I do not have any tender points or the muscle tenderness that is accompanied with fibro. My pain is also not widespread it is patchy moreso like vasculitis. So I wonder then why my 2 EMG's/Nerve conduction studies & 1 skin biopsy for small nerve fiber involvement were negative??? Can anyone relate? Also, what is the difference between Lupus Cerebritis & Lupus Vasculitis? Thanks so much.
12-07-2009, 11:55 PM
wow your symptoms sound exactly like mine. I have CIdp. but lately I have had rheumatological symtoms I get the patches or what I call phantom voids of sensation. I have been having a chaffed rash on my face and my hands, red. brain fog that has sinus pressure too. my heart rate has only gone up to 120 lately but it feels like its pounding. my blood pressure drops to 80s over 40s( that is the CIDP). I get joint pain and all kinds of different pain. I dont have the link on me right now but cross reference "fibromyalgia", "cidp" and "oxford journal" it kind of says that in many cases fibro is closer to neurology than rheumatology and can be linked to CIDP. I am going to some fancy doctors this week and I will let you know what they come up with. maybe it might apply to you.
12-08-2009, 09:24 AM
Lupus cerebritis is blood vessel damage caused by the body's own defense system and it is a symptom of Lupus that is very difficult to diagnose. When that damage is inflammation, it is usually refered to as Lupus vasculitis.
Lupus cerebritis basically refers to brain or nervous system involvement in Lupus. The symptoms of lupus cerebritis may be mild or severe and these may include depression, anxiety, headaches, stroke and seizures and others. Serious symptoms of this condition are found in about 15% of cases and is usually only found in those patients who have severe Lupus.
In some cases, inflammation of brain can be seen if the brain or the nervous system is attacked as a result of problems with the immune system. The serious problems caused because of inflammation include: headaches, seizures, vision problems, dizziness, behavior changes and even stroke.
More recently, cases with some mild form of lupus cerebritis have been seen. The symptoms of these cases include: a mild kind of depression, headache and even memory loss in some cases.
Treatment can include steroids along with immunosuppressive drugs. Brain scans are used to determine if the condition is related to a clotting problem that is called Hughes syndrome. In these cases, some areas in the blood does not get sufficient blood supply because of a blood clot, and in this case, the treatment involves thinning the blood with anticoagulants or aspirin.
In severe flare ups of lupus, some other psychiatric disorders may be experienced including mood swings or other personality disorders. In some cases however psychotic behavior may also be observed. It is important to understand that in United States, more than 50 % patients with systemic lupus erythematosus may suffer from some type of neurological involvement with their Lupus.
Basically there are two kinds of lupus cerebritis affecting the brain. The first kind is seen when lupus causes physical changes or alterations in the brain activity. The second form is a clotting disorder (such as Hughes Syndrome).
Lupus vasculitis is inflammation of the blood vessels. Inflammation is a condition in which tissue is damaged by blood cells entering the tissues. In inflammatory diseases (like Lupus), these cells are mostly white blood cells. White blood cells circulate and serve as our major defense against infection. Ordinarily, white blood cells destroy bacteria and viruses. However, they can also damage normal tissue if they invade it.
Vasculitis can cause many different symptoms, depending upon:
what tissues are involved and the severity of the tissue damage.
Some patients are not ill but notice occasional spots on their skin.
Others are very ill with systemic symptoms and major organ damage.
Internal (systemic) symptoms can include: fever, generally feeling bad (malaise), muscle and joint pain, poor appetite, weight loss, and fatigue.
Skin symptoms can include: red or purple dots (petechiae), usually most numerous on the legs, larger spots (about the size of the end of a finger (purpura), some of which look like large bruises). Less common vasculitis lesions are: hives, an itchy lumpy rash, or painful or tender lumps. Areas of dead skin can appear as: ulcers (especially around the ankles, small black spots at the ends of the fingers or around the fingernails and toes (nail fold infarcts), gangrene of fingers or toes.
Brain symptoms are very similar to those of Lupus Cerebritis: headaches,
behavioral disturbances, confusion, seizures, and strokes.
I hope that I've answered your question. Please let me know if you need anything further.
Peace and Blessings
12-08-2009, 09:58 AM
I've been on Prozac, Lexapro, and Paxil for anxiety/suspected depression, and never had good results. The Paxil probably did the best at alleviating the anxiety, but only because the dosage was high enough to turn me into a zombie. This past spring, I tried Cymbalta for a few months, and was hopeful that it would not produce the zombie-effect, since it works on both serotonin and norepinephrin, but no such luck. I've come to the conclusion that the mental symptoms that we as lupus sufferers have are not caused by the normal cause, and therefore, the normal treatments aren't very effective. Since anti-inflammatories actually help my anxiety more than anything else, I know that my mental issues are caused by inflammation. Whether it's vascular swelling or tissue swelling or something else I haven't even considered, I don't know, and my doctor doesn't care to help figure it out, since, as far as he's concerned, anxiety, dizziness, nausea, etc. aren't lupus symptoms. Anyway, to come back from that tangent, I hope Cymbalta works for you, but don't hold your breath....
12-08-2009, 02:32 PM
I too tried Cymbalta. I was on it for 6 months. No relief or any help for anything.
adsimcik, I'm beginning to think as you do about typical treatments not helping. I have heard of some using treatments like Cymbalta that helped, but not very many.
12-08-2009, 02:37 PM
Less common vasculitis lesions are: hives, an itchy lumpy rash, or painful or tender lumps.
Brain symptoms are very similar to those of Lupus Cerebritis: headaches,
behavioral disturbances, confusion
Well, I'm shocked. This is the first I've heard/read about this before. Thanks!
12-08-2009, 06:33 PM
I am right there with you...a lot of "typical" meds don't do what they are supposed to do for us. I also developed super drug sesntivites..I can hardly take anything without having some odd effect. If one more doc says.."well that shouldn't be" I am going to just ((((explode)))))!!!! Because they didn't read it in a book or journal ...it shouldn't be...well I am living proof.
12-09-2009, 12:56 PM
I tried Cymbalta for a while when they thought I had Fibromyalgia.. Went through Lyrica first, ended up quitting the Cymbalta because it gave me wicked hot flashes and night sweats so bad that I had to wash the sheets every day!! I hung on as long as I could, hoping that it was just a side effect and would go away, but alas, it didn't. I was bummed, because for once, Cymbalta actually did address *some* of my pain issues (albeit, not much).. that's when I went to Savella, no improvement and then they gave me the Dx of SLE... now I'm on Plaquenil.
12-10-2009, 04:15 AM
Ive been on plaquenil for 6 months...no relief :/
12-11-2009, 10:21 AM
Oh Shannon...I forgot how bad Cymbalta made me sweat. It did that to me too...not as bad as you went through, but oh, I was always so sweaty. I didn't get to try Lyrica.
I was on Plaq for six months too... no help.
Andrea, I'm scared to try anything new due to sensitivities like that. I've got new ones I've never had...doc prescribed an antibiotic for me that never bothered me before, years ago, but I broke out in a rash. We wondered if it was the Ai thing but it started going away as soon as it got out of my system so we're pretty sure it was the antibiotic. Ugh, it's so frustrating. Why are we so sensitive to medications?
12-11-2009, 12:08 PM
I tried Lyrica (pregabalin) without success earlier in the fall. It works by mimicking GABA, an amino acid that acts as a neuro-inhibitor. The problem with Lyrica is that it crosses the blood-brain barrier, which results in a drunk-like, tipsy feeling (I equated it to vertigo, since that was my only common point of reference). However, GABA is available over-the-counter and does not cross the blood-brain barrier, so you can get a similar benefit as far as pain reduction and energy boosting without the weird neurological side effects. However, you may want to take a few days to see how it affects you. It supposedly has a sedative effect, but it makes me wired, so I can only take it in the morning. I believe that it has had a positive effect on my fatigue. Granted, I still get tired, but not to the extant that I did before starting GABA.
On another note, I have a theory about that antibiotic intolerance. How long did you take the antibiotic (and what was it?)? Before I got positively diagnosed with lupus this year, my doctor and I were operating under the theory that it could be Lyme disease. Fortunately, I had a fairly open-minded doctor who was willing to listen to my theories and work with me to figure things out. He was very comfortable giving my doxycycline, a very safe antibiotic used to treat acne and other bacterial skin problems. I was on and off it several times, and it almost always followed a similar pattern. The day I would start, I felt like a million bucks, and then I would "crash" for two or three days, and then slowly get better over the next couple of weeks. Once I recovered from that flare, I would have to say that the results were similar to (and usually better than) the plaquenil I've been taking this year. (Plus, it cleared up the acne and mouth ulcers rather nicely!)
Now, why are we so sun sensitive? Exposure to UV rays kills skin cells, and then our immune system (over)responds by sending in 20 battalions to handle a minor local drive-by shooting. In a similar matter, when we take an antibiotic, our systems are flooded with dead bacteria, which sends our immune systems into overdrive and causes a flare. Based on my experiences (and the fact that antibiotic therapy has been proven to be effective with RA and other AI diseases), I suspect that after you make it through that first flare, lupus symptoms will be reduced because the antibiotic keeps bacterial activity below a level that triggers the immune system to overreact (ie. it removes some of the stress from our immune systems). Unfortunately, my rheumatologist doesn't seem to be too open-minded about any of my ideas (even though he readily admits he doesn't know everything about how lupus affects our bodies), so I haven't had a chance to try plaquenil and doxycycline at the same time. (On a side note, my eye doctor even suggested doxy as a treatment for my recurring scleritis, and even the rheumatologist said that it is useful for treating chronic dry eye...) If anybody has an open-minded rheumatologist and is willing to suffer a possible short-term flare for a probable long-term benefit, I would love to know how antibiotic therapy affects lupus symptoms for other people, specifically joint pain, fatigue, nausea, etc.
(Please, no replies about doxy causing drug-induced lupus - I've already researched that, and it's not true. One of it's relatives, minocycline, has been known to do so, but is still extremely rare.)
12-12-2009, 11:36 PM
I know a lot of what you are feeling, I was diagnosed with SLE, discoid, and have neurological, also. I had 2 strokes last year, to help with the neuropothy pain they put me on Cymbalta. It took awhile for it to work, but I have nothing but good things to say about it. It has now been a year now and I would recommend it as a drug to try. good luck
12-13-2009, 07:55 AM
I am picking up the prescrip for cymbalta today and starting it. I dont have high hopes for this outside of possible pain relief because = wont take it if it keeps me doped up feeling & I really think I need disease control,not necessarily pain control...that would get better with disease control anyway...well see what happens!