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Urgently Need Info About Nsaids/other Meds


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#1 Elehos

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Posted 28 January 2007 - 01:27 AM

Hi everyone,

I know there are meds that are poison to one condition although they can help another, and those with UCTD's, MCTD's or overlap syndrome might have found this out personally. I have OA, Systemic sclero, and SLE, and it seems that there might be something else that they haven't named yet, or a possible change in one diagnosis coming. I am familiar with a long list of drugs that can cause drug-induced lupus, sometimes with symptoms of CNS lupus, but they are primarily heart and blood pressure meds and certain antipsychotics, none of which I am taking, but wonder if others could also cause problems.

Years ago I developed a sensitivity to ibuprofen, mainly horrible headaches, then last year became intolerant of acetaminophen, with liver pain and having seizure- like muscle jerking after taking it, so obviously both are off limits now. Vioxx almost killed me with the second dose, Celebrex didn't help at all, Bextra caused jaundiced, shaking, and horrible headaches within two weeks of taking it, and aspirin caused gout. Last fall the pain in my hips, shoulder, and spine became so bad that I was desperate for anything to ease the pain and asked my doctor (not a rheumatologist, but a wonderful doctor and person who is trying hard to help) for an anti-inflammatory again. pain medication can help certain types of pain, but aren't very effective if inflammation is the primary cause, so he prescribed a different anti-inflammatory for me. It did help my hip, and I hoped against all hope that it wouldn't backfire on me at some point and aggravate my liver.

After being on this particular (high octane) prescription NSAID for almost two months, I found myself sinking further into a depression that went way beyond anything I'd ever experienced before, and actually hit a point of psychotic behavior last Sunday. There wasn't even the ability to get a rational thought in my head all of a sudden, it was like moving on auto pilot, nothing planned, just an instant "snap" in my mind or brain that no one saw coming in the kitchen--not even me. I couldn't stop, and within seconds the damage was done. Since it was such a gradual change before that, with no liver pain, jaundice, or "twitch fits" as I call them, I didn't associate what was happening with this med, or I would have stopped taking it immediately. Let's just say that if my husband hadn't called 911 quickly, I wouldn't have made it.

I was treated and released within hours since the staff realized that I truly needed medical help, not psychiatric intervention, and said that they couldn't help me there--although I seriously volunteered to stay if they had a rheumatologist on staff! After returning home, I went off this med for three days only because it made me tired and didn't want to add to the fatigue, and started feeling more "normal" after a couple of days. The third day I took it since my hips were on fire, and within 45 minutes began to shake violently and cry, and that's when it dawned on me what had been causing my "loose screws" all that time. Ok, I've always had some loose, but in a good way up until then, ones that helped me deal with the pain mentally, and it's good to be back to this point again!

This might be a case where my body is simply rejecting all NSAID's apart from any of the conditions I have, but it makes me wonder if anyone else has also had something like this occur from any meds, maybe not getting to the exact same point, but just not feeling...completely sane. It doesn't have to be only with NSAID's, but with other meds too, either prescribed or OTC. At this point, I'm scared senseless to try anything else regardless of the pain since my general practitioner and other doctor don't know about complications that may arise, and I never, ever, ever want a repeat of those two months, and especially that day. If anyone has any kind of personal experience or links they can share, I would appreciate it greatly!

Best wishes to all,
Elehos

#2 Vee

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Posted 28 January 2007 - 05:27 AM

Elehos,

I'm so sorry to hear of your ordeal. It sounds like it was an awful time for you.
I used to get panic attacks and it sounds like what I used to feel.

As for the joint and muscle pain. They recently put me on the lowest dose of prednisone, which I fought tooth and nail to go on for the longest time, and it has done wonders for my immflamation pain.

I sure hope that you get things straightened out, you broke my heart with your story.

Try to keep a positive outlook on things, something HAS to work!
Happy people don't have the best of everything, they just make the best of everything they have!

Warm and Happy to you! Vee

#3 Elehos

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Posted 28 January 2007 - 10:07 AM

Hi Vee,

Thanks for your response! It's good that at least my state of mind was easily changed by stopping a med, and it was so odd since it wasn't like me to bottom out like that. After taking that one dose several days ago and feeling horrible again, my husband looked up the side effects and found that this med can cause mental and mood changes. There are days that I have felt depressed, but that is so different than being in a depression, and my outlook has always been pretty positive in spite of everything, or at least I could get back to the optimism. Pred is one med that I've wanted to try, but read about that can also cause seizures with lupus, not that it necessarily will, but I'm very cautious at this point. Until a rheumatologist deems me worthy of being a patient, I'll at least avoid meds I know are dangerous for me!

Best wishes to you,
Elehos

#4 Shelley Ensz

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Posted 28 January 2007 - 04:16 PM

Hi Elehos,

I may be wrong (I often am, and I have no medical or psych training at all, so take that into consideration in evaluating this idea.) I tend to think that it might be dangerous to write off the episode as being due to a medication, without further medical evaluation.

The reason I say that is because psychosis is a very well-known possible symptom of lupus, which you have, and it can occur intermittently. Only some cases are caused by the medications used to treat lupus, while others are caused by lupus itself.

The good news (if any) is that if it is psychosis due to lupus, then it is treatable. The way to approach it would be to ask your primary care doctor to refer you for a thorough neuro/psych evaluation. Make them give you every neuro-psych test they have, so they don't rush to judgement on the diagnosis (since that would throw the treatment off).

Just to top things off smartly, there is a very high incidence of mental health problems with scleroderma, too. Some researchers now think it may be due to inflammation affecting the brain. Which really behooves us to take all signs of any mental health issues very seriously, and demand thorough testing and treatment at the first sign of trouble.

I'm sure you agree that we all need to retain as much of our wits and equilibrium as we can, regardless of what the illness throws at us. Please don't just brush this off as only due to the meds, until you've had a thorough evaluation. It might be something more serious lurking around, which may really need medical treatment (like lupus psychosis).
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#5 emmie

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Posted 28 January 2007 - 07:15 PM

Elehos,

My heart goes out to you. I agree with Shelley. I have a diagnosis of Hashimoto's Encephalopathy with is considered an autoimmune attack of some sort on the neurons of the brain. It is rare, first written up in 1966 I believe and under diagnosed since most doctors. are not familiar with the disease.

I mention it only because other diseases that might have been causing my symptoms had to be ruled out. CNS lupus involvement, Sjogrens can have CNS involvement, MS, vasculitis in the brain etc etc.

In other words, medication or reactions between meds may or may not have been the cause of your experience. I truly understand how frightening it is. Do advise your dr. about it and see if you can get a neuro consult at the very least. Keep us posted.

xoxo emmie

#6 Elehos

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Posted 30 January 2007 - 06:46 AM

Hi Shelley and Emmie,

It struck me as odd that one of my doctors didn't have too much of a reaction when I mentioned the seizure like activity after taking acetaminophen, along with other electric shock symptoms in not only my head, face, and through the feet. There are times I wondered if I had had a stroke, but only an MRI or CT scan can check for damage to my brain. Some of the symptoms I've had sound like MS, and I think I'll make an appointment with my neurologist again. He's sharp as a tack and will probably be the one to figure out what's wrong with my wiring, and may have other patients with sclero and lupus. Thanks for your input, and now it's time to look through my journal and add a few more pages to take to the doctor. Without the "dreaded med," I definitely feel like myself again!

Hugs to both of you,

Elehos

PS

Hi Whirlway--I got your PM, and will respond in a bit. Typing is slow at the moment...grrr...(lol)

#7 sadie20

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Posted 30 January 2007 - 04:56 PM

Elehos,
Welcome to the "liver cannot tolerate any drug club". After waiting 4 months to see a liver dr. due to elevated enzymes and periodic pain, I was told my slides from the biopsy(also evaluated by 2 pathologists was "not definitive" for Autoimmune Hep which I thought was GREAT news. However, The bad news is that I cannot EVER take any immunosuppressive drugs or nsaids or Tylenol. For some reason, my liver does not process these drugs. Like you, I have Systemic Sclero and OA. I have been off all meds for 2 weeks prior to my latest enzymes so I really do understand the level of pain(muscle and joint). Anti-inflammatory drugs work great for this. Multiple showers, heat, mild exercise all help this..but it is not very practical or good for out skin. Terribly frustrating isn't it?

#8 Elehos

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Posted 31 January 2007 - 05:57 AM

Hi Sadie,

Not a fun club to belong to, is it? After doing a bit more research online, it seems that the reactions I was getting to NSAIDs were actually symptoms of an overdose due to the fact that another med I'm on causes kidney function to slow, and my body can't eliminate NSAIDs at a normal rate these days. Sclero and lupus do enough to the kidneys, but at least things are starting to make sense now, and eliminating certain meds is the best way to go. Since I still can't get into a rheumatologist, I'll have to keep my other doctors updated with info I find so this type of thing never arises again.

Sadie, I'm so sorry that you can't take most, if any meds, especially since I understand the pain that OA alone can cause, and coupled with sclero it's very rough. Most of us seem to have more than one condition going on in our bodies and the cure for one is poison to another. Physical pain is still easier than mental pain any day, so I'll play it safe and stick with that :blink: . Thanks again for your response, and will talk to you again!

Best wishes and hugs to everyone,
Elehos

#9 Sweet

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Posted 31 January 2007 - 06:35 AM

Elehos,

Wow you have become a super sleuth! It pays to be proactive about our disease doesn't it. We can't always rely on the doctor to figure things out. I'm glad you were able to come up with a reason for what was happening.

Thinking of you....
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)