Fibromyalgia Support Group
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Hi Everyone,
I went to see a new rhuematologist yesterday. And we're back to the question of whether I have fibro or sjogren's.
Ten years ago, my first rhuemy doc diagnosed me as "possible sjs (sjogren's)". My SSA antibodies were boderline. I didn't have any dry eye/mouth symptoms (symptoms of sjs). But I did get fatigue and progressively more joint/muscle (couldn't tell which one) pain. Then my SSA antibodies progressive went up off the chart. She suggested Plaquenil, if I wanted, because there are side effects such as irreversible blindness and stomach upset. I didn't take it--we both thought the risks were higher than the benefits.
A few years back, that rhuemy doc retired. The new rhuemy doc (Doc #2) didn't think I have sjs. He thought I had fibro instead. He said that I had SSA antibodies, but the other blood test markers did not correlate with sjs. If had sjs, then markers for inflammation would be positive (C-reactive protein and Westergren Sedimentation rate); but they showed no infammation. Meanwhile, my syptoms matched those for fibro: muscle pain, joint/muscle stiffness, sensitivity, anxiety, extreme fatigue. He didn't follow up with me. He only told me to get more light exercise.
Since I didn't get any follow up for a few years, I want to see another rhuemy doc (Doc #3). She thought I had sjs, and was very aggressive about treatment: Plaquenil (without any baseline eye exam, "Don't worry about it." she said.) I didn't like her attitude--very patriachial and dismissive of my concerns. Didn't take the Plaquenil. Didn't see her again.
I saw my latest rheumy doc (Doc #4) yesterday. Just based on my oral history and my old blood test results, he thoguht I have sjs. He didn't seem to ask much about my fibro symptoms. He ordered blood and urine tests. He suggested some meds, which I had already tried and had bad side effects (gabapentin, lyrica, etc.). He also suggested Plaquenil (WITH eye exam), but will wait on this one. Meanwhile, he suggests that I take Prednisone. This is without even getting my blood test results yet.
Has anyone here taken Prednisone? What are your side effects?
I'm concerned about Prednisone. No other doc has ever suggested it. Then I read about it. It is an anti-inflammatory, and suppresses the immune system, and has long term side effects.
I am about to take an overseas trip and am about to take some travel vaccines (for Typoid and Malaria). Taking a med that suppresses my immune system seems kind of risky. I told him this, but he said not to worry.
Any thoughts on this?
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Another day, another ouchie?My bruised achilles tendon (don't ask) makes my foot numb. Wonky on meds, whacked it.Now, as to fibro:A lot of reports are going around some parts of social media that fibro (and dang near anything else) are caused by post-Covid, post-flu, post-vaccinations, post-pick-something.1. Your risk of death or serious complications beyond "ow, that shot hurt!" are typically...
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Today (August 8) is INternational Cat Day. Don't click away! International DOG day is August 26! Both were created to raise aweareness and funds for the well-being of critters. We have many such dayts, to the pint that every day is like an old Catholic saints' day calendar: Take your pick!I'm home, obvs, and still ill. Left calf and foot not great after a tangle-fall, but i'll live. Just can't...
Mu suggestion to you if you do take it lay off until you get home from your trip. SUGAR BEAR!!!
Did any of the doctors you've seen suggest a salivary gland biopsy for Sjogren's? In addition to bloodwork, that's pretty much the gold standard to determine if that is the problem. You may simply have mixed connective tissue disease but I'd get the biopsy to rule Sjogren's out once and for all.
And, did anyone bother to tell you that Plaquenil takes about 6 months to take full effect? As far as side effects go, I don't have much patience with them as manufacturers now have to list every possible scenario that *could* happen. You can thank our litigious society for that. As long as you are taking reasonable precautions such as an eye exam, try it.
Steroids have their uses. You don't mention the dosage or how long you are expected to take them. My experience is that they can cause sleeplessness (very common), an increase in appetite (very common) and possible mood swings (common - the longer I need them the more I act like a sunburned rattle snake).
Yes, they do depress the immune system which is why a long course of this medication should be avoided if at all possible. I'm a high risk patient because of my lungs. I use Wild Elderberry syrup (comes in gummies too) which is a super anti viral to ward off the flu, colds etc. if I need steroids. Good hand washing is also important. I carry anti bacterial wipes with me too especially when traveling and during cold and flu season.
If this is a Medrol pack which is a short course of steroids that tapers down every day or just a small supply, I'd go ahead.
I'm highly intolerant of medication. Most of what I do take is the lowest dose possible. I've even needed to have things reformulated using a compound pharmacy. I'm not unsympathetic to having issues with medication. Side effects are common and often resolve themselves if you can stick it out.
It is fine to be educated about medication but it seems that you may be letting that get in the way of finding a solution for your health problems. The Internet is a great resource but too much information can be a bad thing too. You deserve a better quality of life. Take care.
I'm VERY sensitive to meds. For example, a tiny tiny bit of gabapentin (1/2 of the lowest dose, got it in liquid form) caused me insomnia, made me hyper, angry, etc. Same with Lyrica.
The doc recommended Prednisone at 5 mg, 2x/day--that's 10 mg/day. Is that considered high? He didn't say how long to take it.
Prednisone is for anti-inflammation, but the blood tests consistently show that I do not have systemic inflammation (SED rates, CRP).
The 3rd rhuemy doc wanted me to take the lip biopsy test. I was going to do it, but changed my mind. The cut would hurt like hell and may even cause nerve damage. Yet it wouldn't do anything for me. It would not change the plan of treatment at all. SJS has no "cure", just like fibro. You can only treat the symptoms. I wouldn't go thru all that pain only for the doc's academic curiosity. (I was actually going to do it, but when I arrived at the ENT doc's office, they told me the machine broke that morning. A sign?!)
My primary care doc called me today and he's concerned about my taking the Prednisone along with the travel vaccines. We're playing phone tag, so I didn't get to talk to him yet.
Fibro is a nervous system disorder, whereas Sjs is an autoimmune disorder. Both do not have a cure; can only treat symptoms. The prime symptoms of Sjs are dry mouth and eyes, but mine are so mild that they don't bother me.
The fatigue and pain may be due to either (or something else).
And by the way, my pain has decreased substantially the last 2 months from about 7/8 to about a 3. Energy now comes in bigger spurts. (Remission?) I had been doing "meditation" every night to calm down my nervous system.
I likely would not take the Prednisone--definitely not before trip.
Sugarbear, Can you come clean my house?? ;)
My goodness! It seems kind of irresponsible of him to NOT tell me the side effects when I specifically asked him. And to tell me not to worry about taking it at the same time as I take my travel vaccines--without even asking me whether I was taking oral vaccines with LIVE bacteria. That was what my primary doc had prescribed (oral vaccine) instead of injection (of dead bacteria) because of lower cost (no insurance coverage for travel vaccines). My primary doc called back--I will take the injection instead.
Also, my trip is to a tropical country where there are mosquito-carrying diseases that even vaccines cannot prevent. It'd be nuts to take something that'd depress my own natural immune system.
Anyway, I won't be taking the prednisone before my trip. I may not even take it afterward. The negatives seem to outweigh the positives.
Thank you all for your info.
But my father has RA and has been on prednisone for years, maybe more than a decade and a half now. He was an occasional SOB before that. But then his RA, plus bipolar, plus steroids made him frightening. Idk how much the prednisone contributed to his mood issues but I believe it was a hell of a lot. That’s way too long to be on prednisone. His RA is bad and other meds don’t help him. So not a lot of options for him medically. Even if there were at this point, his mind and mood isn’t right and with his temper, violent explosiveness, and stubbornness, I just stay the hell away. I don’t speak to him anymore.
Generally, it’s supposed to be used for short term courses. They can put you on it for a while then cycle off of it and put you back in if you need it again.
Thanks for letting me know. I certainly don't want anything to mess with my moods; they're fragile enough.