Hello,

My girlfriend has been taking plaquenil (Sp?) for a few years now after being diagnosed with Connective tissue disease. They have ruled out Lupus altogether. Lately she has had mouth sores, acne, upset stomach, feeling achey, mood swings, paranoia. She stated to me that she was having an "attack" the other day. Does this mean that the meds are not working and causing these symptoms? I want to be supportive of her but she now needs her space and is pushing me away. I dont know if she needs a med adjustment or if the meds are causing something seriously wrong. Any input would be helpful

Dear Chuck, "Connective tissue disease" is often a PRE-diagnosis, not a final diagnosis. Dr. Daniel Wallace in his lupus hardcover uses the term "undifferentiated connective tissue disease". He cites a study that looked at such a group for 5 years, then he provides stats for what happened 5 years out. A certain percent was diagnosed with something very specific (like lupus, scleroderma, rheumatoid arthrtis, Raynaud's, & polymyositis). Others were Dx'ed with something called "mixed connective tissue disease"---which sounds "fuzzy" but really does have defined characteristics & test results. Others were remained "UCTD" after 5 years. And still others were deemed to have no disease at all.

Many articles suggest that there is no one test that "rules lupus out". Plus, as the paragraph above conveys, lupus & related diseases can take a long time in "announcing" themselves.

Is your girlfriend still seeing a rheumatologist regularly for check-ups? Is this rheumie aware of her worsening symptoms? Does the rheumie retest regularly? Has she ever seen a dermatologist for her rashes?

People with lupus can get mouth sores, aching, etc., whether on meds or not. These are generally understood as disease symptoms, not medication side-effects. And as to whether someone has "paranoia", I think only a dr. is equipped to say. Lupus can affect the CNS, which includes the brain, of course. CNS complications and kidney involvement occur in some people with lupus & require top-flight specialists and meds far stronger than Plaquenil.

You could try the search box above, and also the "Resources" tab, to read more. Meanwhile, I hope she & you both keep posting here. Best wishes to both of you, from Vee

Thanks for responding. They have diagnosed her with rheumatoid arthritis and deny that its Lupus. I dont believe she has advised her Doctor of the recent symptoms nor am I able to ask her due to her mindset right now. She does go for the regular appointments every few months and she has seen a dermatologist. I have never seen her like this before- tightness in the chest that she cant breathe and muscle aches also were what she complained of yesterday. Is it possible that the she is suffering from adverse affects to the point that she may need to change meds or some type of adjustment? As for my post about paranoia, that was listed in a drug book as a side effect among many.

Hi Deb, I joined the group 2 years ago when my daughter (24 at the time) was officially diagnosed. She has been on Plaquenil for 2 years now. For her it took about a month to kick in. She felt a bit less fatique, and fewer aches. She certainly was able to function much better overall. She will still have the occassional flare - but they seem to be shorter since the Plaquenil. However, she still will have a bad one here now and then - and she temporarily goes on prednisone for those. Overall, I'd say the Plaquenil has not done away with all symptoms all the time, but has kind of "softened" them. Cognitively, the same - a bit less brain fog! I hope this helps!
Deb

Hi, Chuck. Do you know on what basis she was Dx'ed with RA? Like lupus, I think it's one of those for which one must meet multiple diagnostic criteria.

Interesting, also: Dr. Wallace writes that 25% of people with LUPUS have a positive rheumatoid factor. And conversely, 25% of people with RA have a positive ANA. So diagnosis of one vs. the other is not as straightforward as one might think, he points out, esp. early on. He also writes about an occasional person who has clinical features of BOTH: this is called "rhupus".

On those rashes, is there any possible correlation to sun exposure?

In a couple, it's quite hard to observe yet to have no real control over a situation. But FYI---I agree with you that the things you've noted (oral sores, rashes, tightness & pain upon breathing) SHOULD be reported to the rheumie. Good luck! from Vee

I was dxd earlier this year with sle. When I went to the rhuemie (after seeing a regular Dr. several times to no avail), I had a discoid rash on my back,chest arms and neck,a sunburned appearance on my face. I had a feeling of tightness or heaviness in my chest that made breathing difficult. My heart would occasionally feel as though it was literally turning over in my chest. I had sore achey muscles and joints. I also had a lot of "brain fog", and I had what I would say were heightened emotions. By that I mean that I was extra sensitive to things that wouldn't have moved me to that degree pre-lupus. I would cry over tv commercials, and I had a lot of generalized anxiety. When I felt/feel that bad I tend to want to isolate myself, kind of like a wounded animal crawling into a dark cave. I didn't want to hurt anyones feelings, it's just that everything on/in me hurt. I sort of didn't want anyone to see me like that,plus, if I had people telling me, "you look bad" or questioning my symptoms, it forced me to accept and deal with the fact that something was severely wrong. I had a lot of anxiety about whether or not friends/loved ones would still feel the same about me. As for the plaquenil, I take 200mg in the morning and 200mg in the evening, I also take prednisone. I have been on plaquenil for a few months, and I haven't really noticed a change in my physical or emotional state due to the plaquenil, although I'm told it may take 6-8 months. The prednisone really healped with all of the physical/mental stuff. I wish you both the best, Hang in there!:)

Veej,

I am not sure what gave them that diagnosis since we were not together then. They thought in the beginning that it was Lupus but ruled it out somehow Hopefully Monday she sees her Doc, to get it straightened out. She doesnt normally spend much time in the sun but she is a waitress and sweats alot.

Next question: I researched plaquenil in a drug handbook. its lists also side effects of paranoia and psychosis among other things. It also indicates that the symptoms can happen during long term treatment. She has been on this for atleast 2 years. Am I misinterpreting the drug book? My mother also interpreted it as that also


Realisticchic: She has been on it for quite some time and she has been complaining of the same things that you just stated as of late. This is why I believe that the meds arent working or she is having a adverse reaction. the mood swings resemble that of a bi-polar person.

Dear Chuck, You can actually check Plaquenil again right here, if you want, via the Resources tab (above), then Medline Plus, then Drugs & Supplements. I do see mood swings listed. But having one disease or condition doesn't bar having another---so I hope all plausible causes for mood swings are looked into.

I had terrible problems with plummeting energy & mood followed, but that was BEFORE I got a Dx and started Plaquenil. I was also anemic, which was adding to my overall picture. And some people also have endocrine problems, like thryoid (Hashimoto's). That can throw so much off, too: body temp, energy, etc.

Anyway, I really hope the dr. can tweak all this apart & find out what the underlying illness is (or are), whether her med is helping or harming, whether her med is adequate & appropriate for her symptoms, etc. You guys need a break here! Hoping you get it, starting Monday! Best wishes, Vee