Lip problem with Doxy…

[fastspinW]

Hi,

When I first started on AP Dr. T put me on Minocin and for 4-5 years I did very well on it. Eventually, however, I began to experience terrible leg cramps (and I mean TERRIBLE!!!) which went away when I stopped the Minocin and switched over to Doxy.

Sadly, once summer came around last year my job as a boat captain resulted in terrible sunburns related to the Doxy so for awhile I switched back to Minocin. Alas, within a few weeks time the terrible leg cramps returned and I was really in a bind. Eventually despite my local doctor assuring me that the doxy caused sun sensitivity was not dose dependent I tried cutting back from 2 doxy tabs a day to pulse dosing of 2 on MWF. Happily this resulted in the sunburn problem going away.

Over the course of last winter I had to go back to the 2x7days dosage as my RA had begun to flare but once summer came round I was once again forced to switch to the MWF schedule. While this cured the sunburn problem I had a fair number of sore hands days all summer so once my boat season wound up I switched back to the daily dosage of 2 tabs. I had thought of trying to weather the sore hands but bit by bit it appeared I was headed for a full body flare.

Within a week or two of going back to 14 tabs a week my RA symptoms appeared to improve but now I have a new problem. To whit, my lips became sore and slightly blistered within a few days of going back to the twice a day dose of doxy. At first I thought this might be sunburn as I am an outdoor photographer in the non-boat season and still spend a fair amount of time in the sun. Alas, I decided to stay inside for a week and see if the lip discomfort disappeared but it didn’t. My lower lip is still quite sensitive as if sunburned but as I haven’t been in the sun for days it appears I may be reacting to the doxy.

Any body have any experience with this? Or any thoughts on how to proceed?

All best,
Winston

[BG]

So sorry to read of your problems with doxy. I haven’t had a problem on my lips but have repeatedly experienced the problem you describe on my nose and cheeks. Not only can it be caused by exposure to the sun but also by toxic buildup of doxy in the tissues. Whenever I developed the problem, I would go off doxy for a minimum of two weeks to flush it out my system. I also was vigilant about wearing a large brimmed hat and other sun protection while on the full dose of doxy. The problem got so bad for me that I became concerned my skin would fall off (which my rheumatologist warned could happen if the toxic buildup in the skin gets high enough) but I also felt bad when I was off doxy for any length of time so my solution was to cut back the doxy to 100 mg taken at 9pm every other day. I still have to wear sun protection but I haven’t developed the toxic buildup in my skin and the problems associated with that. I was on a full dose of doxy (100 mgs two times a day) for seven full months followed by many months of two week periods on the full dose before I cut back to 100 mg every other night so the lower dose is working out for me presently.

Barb

[Maz]

Just wondering, have either of you tried tetracycline instead of doxy? I had more sun sensitivity with doxy (I’m a real sun-lover and out in it whenever possible), but it’s not a problem with tetracycline. I don’t seem to burn and my skin doesn’t sting like it did with doxy.

In terms of dose equivalency: 100mg doxycycline = 250mg tetracycline

Winston, one other thought…with regards to your sore lips, as it doesn’t seem to be sun-related, is it possible you’ve developed oral candida? Oral candida, if it’s going to affect the lip area, usually causes sore, cracked, red areas near the angles of the lips where the upper and lower lips meet.

[hopefulmama]

This is really interesting to me, because recently (before I was instructed to go off my doxy) I was having problems with blistering on my lower lip. I had a blister that looked something like a cold sore that lasted for almost a month. I’ve never had anything like that before in my life. My lip was so sore, even in the parts far away from that blister.

Once I stopped taking the doxy a few days ago, the blister vanished and my lip looks completely normal.

I never realized it could be an effect from toxic buildup of doxy… but maybe that would explain the headaches I was having that caused my AP doc to take me off it.

We renegotiated tonight and he is going to let me try it again at 100mg every other night, on the strict understanding that if I get so much as one headache, I will discontinue immediately.

Thanks for posting Winston and I really hope you can get the blistering problem resolved. I don’t know if it helps to know that my lower lip returned to normal when I stopped the doxy on Monday… maybe it gives you more information with which to proceed forward. Would it be possible to take a week off and see if your lip resolves?

Best wishes and I hope you find an answer very soon!

A

[fastspinW]

Hi,

Thanks for all the input! As always “misery loves company” and while it’s sad to know that others have had similar problems it does leave one feeling less alone. And if there is anything that my multiple chronic illnesses accomplish in my life (other than medical bills aplenty) it is that feeling of “aloneness.” Thank God for groups like this and for folks willing to reach out and help one another during difficult times…

On the good news front after spending 4 days indoors out of the sun my lower lip seems on the mend. No blisters or soreness at this point. I’m hoping that the sunburn I apparently got on the day I forgot to put on lip protection was just a bit more severe than usual and thus took longer to mend. Hopefully I won’t forget again to put stuff on my lip before going out to make photographs in the mountains! (I should mention here that I used vitamin e oil in combination with good old fashioned Vaseline Petroleum Jelly to speed the healing process and it seemed to work like a charm!)

Speaking of lip protection, I have used just about every lip sunburn ointment on the market and most of them have not been very effective. Several months ago my lovely wife Joyce came home from the drugstore with a product called Solar Sense Clear Zinc. When she showed it to me I said, “Take it back hon I can’t stand the taste of zinc sunscreens, they make my mouth taste like metal.”

Now it would be impolite to say that my wife more often than not ignores me, and it might make her appear immodest if I were to say that more often than not she feels that she is right and I am WRONG. So, ever the devoted husband, I won’t say either of those things. I will, however, say that some weeks later after repeated urging on Joyce’s part I finally did give this stuff a trial run. Drum roll please…. and Wow! does it ever work well! Better yet, there is no metallic zinc after taste and although it goes on white like other zinc preparations it quickly fades to invisible. I know it’s cool to look like a lifeguard muscle wise but I’ve never bought into the white lips bit. 🙁

Anyway, Solar Sense Clear Zinc is far and away the best lip sunburn protection I have ever used! Without it I wouldn’t have been able to run my boat tours this past summer. If you’d like to try some pay a visit to this website and there is a complete list of all the drugstores and supermarket chains that carry it in the USA: http://solar-sense.com/where-buy.shtml.

Maz, thanks for the list of docs as well as for the suggestion that I try switching to tetracycline. Hopefully the doxy will work out alright this winter without Maine’s less than stellar sunshine but I may well give the tetracycline a try when the boat season begins next summer.

All my best,
Winston

P.S. My wife Joyce just stuck her head into my
office and said, “What are you up to now?” When
I replied that I was telling folks about Solar
Sense lip protection she asked, “And did you mention
that as usual I was right?” 🙁

[dianne-sunshinecoast]

hi winston, so sorry about all your health problems, and yes the aloneness with chronic ill health is certainly a challenge 🙄 , however i just wanted to say how much i enjoyed your attitude and sense of humour 😀 , it really has given me a lift today 😀 ..kind regards ..di.

[fastspinW]

@dianne-sunshinecoast wrote:

hi winston, so sorry about all your health problems, and yes the aloneness with chronic ill health is certainly a challenge 🙄 , however i just wanted to say how much i enjoyed your attitude and sense of humour 😀 , it really has given me a lift today 😀 ..kind regards ..di.

Dear Diannne,

I was pleased to hear that my post gave you a lift! Lord knows we all need one of those from time to time…

All best,
Winston

[Author]

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