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Laurainaustin

Member
Joined
Dec 24, 2013
Messages
17
Reason
DX FIBRO
Diagnosis
03/2014
Country
US
State
TX
I had surgery on my tear duct a few weeks ago and am on 2 mos of doxycycline because it thins the mucus or somesuch. I realized about a week in that I was feeling GREAT - getting in and out of bed, car, couch with no stiffness or pain whatsoever. I started walking...OMG I could go on walks and feel *pleasantly tired* after and not sore and exhausted. I googled and had ridiculously high hopes - doxy used to be commonly used for inflammatory arthritis, but has fallen out of use because it's a generic and no one speaks up for it much. Also - even tho I couldn't get ANYONE to order me a Lyme test, it's been in the back of my mind for years - is this really Lyme? And Doxy is the drug of choice for Lyme, although at this point I think oral doxy wouldn't make that much difference (my son had Lyme a few years back - needed 6 weeks of IV abx for his recurrence and that knocked it out as far as we can tell), but maybe.

A couple of weeks go by and I'm suddenly tired, irritable, needing naps every day, my shoulders hurt and arms ache all night because I had to carry something extra in my purse that day. Today I woke up and my legs huuuurrrrrrttttt, I took 2 naps and finally an epsom salt bath and put on my pjs at 3:30 - it's a flare.

But I'm NOT STIFF. I can still get up and get down without being slow or hunching over. I can stand up from the couch and walk immediately.

So what is the doxy doing that is helping the stiffness but not the actual flare? Could they be separate things? Any thoughts?
 

karmakitten

New member
Joined
May 2, 2014
Messages
8
Reason
DX FIBRO
Diagnosis
09/1989
Country
US
State
Wisconsin
Be careful. The reason they don't use doxy anymore is due to the side effects, per my *new* rheumie.

But my *old* rheumie tried it on me as a last ditch effort to help me. The side effects I experienced were truly awful. And apparently not that rare cuz they rolled their eyes at me in the ER. I had such severe pitting edema in my lower legs and arms, I looked like Popeye's arms, if you get my visual. Ankles bigger than knees/thighs etc. the edema was awful. Took 6 months to go away and the pain and numbness was awful. All I'm hoping is you'll read this and take NOTE, that's all. Hopefully none of the side effects will happen to you. Just be aware, ok? Also beware of sunburn and heat stroke, both are more common on doxy.

Here for your reference is a list of side effects.

Abdominal or stomach tenderness
bloating
clay-colored stools
cough
dark urine
decreased appetite
diarrhea
diarrhea, watery and severe, which may also be bloody
difficulty with swallowing
dizziness
fast heartbeat
feeling of discomfort
fever
headache
hives, itching, puffiness or swelling of the eyelids or around the eyes, face, lips, or tongue
hives or welts
increased thirst
inflammation of the joints
itching
joint or muscle pain
large, hive-like swelling on the face, eyelids, lips, tongue, throat, hands, legs, feet, or sex organs
loss of appetite
nausea and vomiting
numbness or tingling of the face, hands, or feet
pain
rash
redness and soreness of the eyes
redness of the skin
shortness of breath
sore throat
sores in the mouth
stomach cramps
stomach pain or tenderness
swelling of the feet or lower legs
swollen lymph glands
tightness in the chest
unusual tiredness or weakness
unusual weight loss
wheezing
yellow eyes or skin

Some side effects of doxycycline may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. Also, your health care professional may be able to tell you about ways to prevent or reduce some of these side effects. Check with your health care professional if any of the following side effects continue or are bothersome or if you have any questions about them:
Incidence not known

Back, leg, or stomach pains
black, tarry stools
bleeding gums
blood in the urine or stools
blurred vision
bulging soft spot on the head of an infant
change in the ability to see colors, especially blue or yellow
chest pain, discomfort, or burning
chills
cracks in the skin
decrease in vision
difficulty breathing
discoloration of the thyroid glands
double vision
general body swelling
heartburn
increased sensitivity of the skin to sunlight
loss of heat from the body
lower back or side pain
nosebleeds
pain or burning in the throat
pain with swallowing
painful or difficult urination
pale skin
pinpoint red spots on the skin
rash with flat lesions or small raised lesions on the skin
red, swollen skin
redness or other discoloration of the skin
redness, swelling, or soreness of the tongue
scaly skin
severe nausea
severe stomach pain
severe sunburn
sores, ulcers, or white spots on the lips or tongue or inside the mouth
unusual bleeding or bruising
vomiting blood
 
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mariposa

Senior member
Joined
Apr 19, 2013
Messages
459
Diagnosis
00/0000
Country
US
State
PA
A couple of weeks go by and I'm suddenly tired, irritable, needing naps every day, my shoulders hurt and arms ache all night because I had to carry something extra in my purse that day. Today I woke up and my legs huuuurrrrrrttttt.

Just checking up to see how you're doing now, Laurainaustin. I see you wrote this about 2 weeks ago... is the flare gone and/or under control for you now? Did your doc have anything to say about the side effects of the Doxy?
 

Trellum

Legendary member
Joined
Jul 17, 2013
Messages
1,788
Reason
DX FIBRO
Diagnosis
04/2011
Country
NL
State
NL
Be careful. The reason they don't use doxy anymore is due to the side effects, per my *new* rheumie.

But my *old* rheumie tried it on me as a last ditch effort to help me. The side effects I experienced were truly awful. And apparently not that rare cuz they rolled their eyes at me in the ER. I had such severe pitting edema in my lower legs and arms, I looked like Popeye's arms, if you get my visual. Ankles bigger than knees/thighs etc. the edema was awful. Took 6 months to go away and the pain and numbness was awful. All I'm hoping is you'll read this and take NOTE, that's all. Hopefully none of the side effects will happen to you. Just be aware, ok? Also beware of sunburn and heat stroke, both are more common on doxy.

Here for your reference is a list of side effects.

Abdominal or stomach tenderness
bloating
clay-colored stools
cough
dark urine
decreased appetite
diarrhea
diarrhea, watery and severe, which may also be bloody
difficulty with swallowing
dizziness
fast heartbeat
feeling of discomfort
fever
headache
hives, itching, puffiness or swelling of the eyelids or around the eyes, face, lips, or tongue
hives or welts
increased thirst
inflammation of the joints
itching
joint or muscle pain
large, hive-like swelling on the face, eyelids, lips, tongue, throat, hands, legs, feet, or sex organs
loss of appetite
nausea and vomiting
numbness or tingling of the face, hands, or feet
pain
rash
redness and soreness of the eyes
redness of the skin
shortness of breath
sore throat
sores in the mouth
stomach cramps
stomach pain or tenderness
swelling of the feet or lower legs
swollen lymph glands
tightness in the chest
unusual tiredness or weakness
unusual weight loss
wheezing
yellow eyes or skin

Some side effects of doxycycline may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. Also, your health care professional may be able to tell you about ways to prevent or reduce some of these side effects. Check with your health care professional if any of the following side effects continue or are bothersome or if you have any questions about them:
Incidence not known

Back, leg, or stomach pains
black, tarry stools
bleeding gums
blood in the urine or stools
blurred vision
bulging soft spot on the head of an infant
change in the ability to see colors, especially blue or yellow
chest pain, discomfort, or burning
chills
cracks in the skin
decrease in vision
difficulty breathing
discoloration of the thyroid glands
double vision
general body swelling
heartburn
increased sensitivity of the skin to sunlight
loss of heat from the body
lower back or side pain
nosebleeds
pain or burning in the throat
pain with swallowing
painful or difficult urination
pale skin
pinpoint red spots on the skin
rash with flat lesions or small raised lesions on the skin
red, swollen skin
redness or other discoloration of the skin
redness, swelling, or soreness of the tongue
scaly skin
severe nausea
severe stomach pain
severe sunburn
sores, ulcers, or white spots on the lips or tongue or inside the mouth
unusual bleeding or bruising
vomiting blood

*Sigh* That's why I no longer take everything my doctor gives me without actually checking it online. Scary stuff! Can you believe some medications can actually cancer after a while? i know because I was taking some meds that are known for causing hepatic tumors... wish doctors were more honest and open about the possible side effects, I mean, if a medication poses this kind of risks the patient should know right?

I think everyone has the right to decide if a medication is wroth the risk and if there is a better option to treat their health issues... at least one with less side effects. Feel so bad for having taken Diane 35 for nearly 3 years!
 
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Laurainaustin

Member
Joined
Dec 24, 2013
Messages
17
Reason
DX FIBRO
Diagnosis
03/2014
Country
US
State
TX
Still doing great. Occasional soreness - much less than before, and still no stiffness unless I miss a couple of doses in a row (overnight with girl scouts, forgot to bring it). I am walking 3 miles (sometimes hills) 4-5 times a week. OMG, that alone is stupendous! I haven't been able to walk for exercise or fun in years. No side effects that I am aware of, except that my migraines are a little more frequent. This is a bummer, but manageable. I'm drinking a lot less since you are supposed to avoid alcohol on Doxycycline, and that is surely for the best for a lot of reasons.

The original script has a month to go, so I would be on it anyway, and then I'd be back on it for work (trip to India, we take doxy instead of malaria meds because the side effects are so much better and it's protective against other things we might run into). Interestingly, I have (had) chronic intestinal issues since I was a kid, and the doxy has helped with that too. I thought it would make it worse - abx, you know, but apparently not. I'm not taking any probiotics since my gut seems so much better....will probably start though. Months on abx do take their toll.
 

Laurainaustin

Member
Joined
Dec 24, 2013
Messages
17
Reason
DX FIBRO
Diagnosis
03/2014
Country
US
State
TX
Well well, as it turns out, the doxycycline started giving me esophagitis this week, and thanks to you, Karmakitten, I was primed to wonder if it was the doxy, rather than assume it was something else. I take the pills at night and go to bed right after. They are sticky, and apparently that is a perfect storm for the pill to dissolve only partway down my esophagus and burn it. OMG ouch!

I'm off it while I deal with that (tagamet, mylanta) and stiffening right back up and hurting in places I forgot could hurt. And I am irritable and impatient again, which is a big bummer.

So I'll be happy to get back on it and be more careful with how/when I take it - 2 hrs before bed with more-than-plenty of water. And really, it was nice to take a break and have all the symptoms come back - more confirmation that it was the doxy helping.
 

Brismom

Active member
Joined
May 14, 2014
Messages
53
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
CA
Wow. one time a dentist wanted me to take it on a regular basis to prevent gum disease. I took one or two and I was a sick as a dog (stomach)...I couldn't tolerate it at all.
 

ramsvcu

Member
Joined
May 18, 2014
Messages
21
Reason
DX FIBRO
Diagnosis
05/2014
Country
US
State
VA
Doxycycline is an antibiotic for infection. Never heard of it being used for inflammation or arthritis.
 

Laurainaustin

Member
Joined
Dec 24, 2013
Messages
17
Reason
DX FIBRO
Diagnosis
03/2014
Country
US
State
TX
Doxycycline is an antibiotic for infection. Never heard of it being used for inflammation or arthritis.

It has anti-inflammatory properties and also is used for dry eyes, which I also have as part of Sjogren's syndrome. It did used to be used regularly for inflammatory arthritis. It's not *the best* for longterm use, but it's pretty decent for mid-term use under certain circumstance. It's the end of June now - it kind of quit on me in May so I went off. I'm considering going back on tho after a break.
 
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