mouth sores

[Nancy]

Hi all,

I officially restarted the Minocycline this Mon on a 100mg MWF schedule with Dr.T with an additional script for prednisone to help me with my severe Herxing.  I took my first pill Mon night before bed and by noon Tuesday had chills and flu like symptoms and by 3pm had joint pain all over.  I started the Pred at 4pm and it did help eventually with the flu symptoms and some of the pain.  I took my second pill Wed evening and still have no other new symptoms other than these painful mouth sores.

My question is….I had never heard that mouth sores was a side effect or Herx symptom……until I read my leaflet…..is this anything anyone knows about?  Is it an allergy rather than a Herx?  Should I be concerned?  Will they go away!

AHHHHHHH!  Help!  I am sooooo nervous and upset and want sooooo badly to be on my Mino again as the Doxy did squat for me! 

Greatly needing support and encouragement!

Thanks in advance,

Nancy

[Nancy]

Oh sorry….guess I should have said I have systemic sd and was on Mino for 2 1/2years when dx in 2000/2001 until I had children and since having children have not been able to tolerate Mino…..wasn't sure why but think it was severe herxing.  Thus the retrying of it with added help from prednisone.  It is just this mouth sore thing that is concerning me.  I am not sure if I should take tonights pill or wait until Mon to talk to the doc.  The pharmacist of course just said it is a side effect and I need a different abx.  Ugh!  It is so hard to discuss this with anyone other than you guys! 

Thanks again for any input!  Scared and feeling all alone in this….and it is my bday to top it all off!  Happy day to me….Ha!  This stinks!

Sorry for my frustration! 
Nancy

[Maz]

[user=149]Nancy[/user] wrote:

It is just this mouth sore thing that is concerning me.  I am not sure if I should take tonights pill or wait until Mon to talk to the doc. 

Nancy, happy birthday!!!!! :roll-laugh:  Just so sorry to hear you're having a rough day, today of all days in the year. :crying:

Probably a good idea to speak with Dr T about this, as it's causing so much discomfort. I did a search on the old BB looking for sclero and mouth ulcers, but nothing came up and don't recall this being mentioned on the new BB either. However, you might find this article interesting!

http://dermatology.cdlib.org/132/original/tcn/gorsky.html

It's a dermatology study that was done using a mouth wash of minocycline for oral mouth ulcers! So, I wouldn't be surprised at all if this is a herx you're experiencing from the oral med.

One thing to check with Dr T is the possibility of Minocycline-induced lupus. Of course, the jury is out on whether this condition is actually a herx or a drug side-effect. In your case, it may depend on whether you are just prone to mouth ulcers and the mino brought them out in a big way in combination with your other symptoms (herx) or whether you might need to switch up your antibiotics, change your dose, start more slowly, take a break and restart to see, etc.

Also…any chance this might be oral thrush? This can be a really painful condition that would need nystatin or something a bit stronger like diflucan.

Hope this helps…and fingers crossed for you that this is just one momma of a herx.

Peace, Maz

[Nancy]

Hi Maz,

Thank you!  Yes, bad timing….shoulda thought about it when starting it….ah well.  It has been a cruddy week.  In any case, no, it seems to really be canker sores and not thrush as that did cross my mind as well.  I guess I have gotten one or two before in my life but nothing this painful and certainly not 3 at once.  Unfortunately, Dr T doesn't seem to be too knowledgable about what is really going on and this trial (my third) was by my push.  He was ready to put me on immunosuppressants instead of AP.   I had done A LOT of reading and really thought/think that what I am experincing is Herx, but this threw me a knew curveball.  Now I am questioning again if this is really right or not.  I guess I will skip tonight's dose and check in with him Mon.

 I may be facing the fact that I just may have to get my hiney out to Dr. S and try Clindy although….not sure how he would approach the mino thing seeing that is the follow up to the clindy.  Do you or anyone else know of anyone using just clindy and zithromycin???  I seem to be running out of options too quickly. 

Thanks again.

N

[Maz]

[user=149]Nancy[/user] wrote:

 I may be facing the fact that I just may have to get my hiney out to Dr. S and try Clindy although….not sure how he would approach the mino thing seeing that is the follow up to the clindy.  Do you or anyone else know of anyone using just clindy and zithromycin???  I seem to be running out of options too quickly. 

 

Nancy, you could call Dr S for a phone consult. Drop a line to apdoctors@roadback.org and Diane will give you contact details. Just be sure to ask for his specific phone consult days/times. I have a feeling Monday or Tuesday may be one of his lunchtime consult days, so see if you can get the info over the weekend and then try early in the week….as well as calling Dr T, of course. Would be good to get two AP doc opinions, as one may offer options the other doesn't. Dr F in CA is another alternative and I understand he offers a number of different protocols to be sure of patient fit.

Cheryl, Richie, Kim, Lynne, Steph or another sclero patient may know more about possible alternatives to mino after IV Clindy and which doctors may be open to prescribing these.

Don't give up hope yet….these are very early days and may just be one of those transient hiccups on the road….early worsening is pretty common – expected even -and you've taken breaks from AP, which can sometimes complicate the picture a bit.

Hope your weekend finds you feeling a bit better and please let us know how your researches go.

Peace, Maz

[linda]

Hi Nancy,

Are you currently taking mtx? It can cause mouth sores. If you are you should call your doctor, if not, just disregard.

linda

[Kim]

Hey Nancy,

Good luck on your restart.  The regimen that got me the best results was:

200 Mino MWF, and every other Friday substitute the Mino with two 250mg Zith.

I also had one round of 10 Clindy IVs with Dr. S.

(We first tried combining the Mino with oral Clindy which did not work, but the Mino/Zith combo proved to be successful).

Good luck…..kim

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