Sandi's Scleroderma Story and a couple of questions

[Anonymous]

[align=center]Sandi's Story[/align]

In late Nov.06 I had a tooth on the lower left side give way. The tooth had been root canaled before and was being used as an anchor tooth for a bridge. I had to have the tooth pulled so a new bridge could be anchored to the tooth in front of it. Pulling the root canaled tooth was no easy task. After going to my dentist and getting numbed with Novocaine in order to remove the bridge at 9 am, I stayed numb and went to the oral surgeon at 230. I always feel like I'm drowning and can't breathe when I am numb and hands are going in and out of my mouth.

I was holding on for dear life and panicked beyond belief. Then of course the tooth broke off and it took 4 people to dig it out. I was a mess when it was time to go back to my dentist at 5 and have a temp bridge put in. One week later all went well when the new permanent bridge was put in.

Almost six weeks later on Jan 6 07 I awoke so sick and hurting, felt like I had fever and flu like symptoms, but most of all I felt like I had crushed my hands, shoulders, elbows, and arms during the night. This went on for 4–5 days and then the flu and fever symptoms went away but the pain in my wrists and hands stayed. My hands especially were swollen badly. and very puffy.

Went to my PCP who put me on Celebrex with no relief at all. In Feb 07 I went to Neurologist thinking a pinched nerve. She ran all kind of tests and even a scan and saw nothing unusual…maybe carpal tunnel but said you might want to see a Rheumy even though she didnt think it was RA from the bloodwork. Back to PCP who said just osteo arthritis in your hands, take the celebrex and rest hands. No big deal.

The joint pain got worse and I got weaker and weaker until I could not even walk a mile. Kept telling PCP the Celebrex was not working but he wasn't listening.

I began reading books, taking supplements, eating less meat and more fruits and veggies but no real change. By now my eyesockets, nose bones, cheeks, chin and every joint hurt and the weakness was much worse.

In Sept 07, desperate, I went to see a Rheumatologist. Wish I hadnt waited so long. He looked at my hands and said I think its Scleroderma. Now it started to make sense. The symptoms were perfect with the skin thickening and pain. He put me on Methotrexate, 4 pills once a week. Went to PCP who said you dont have Sclero just arthritis. I have since changed PCPs.

Next month at the Rheumy he took me off the Celebrex the PCP had had me on for 6 months and substituted Mobic. What a relief. It did help the pain some.

Next month he doubled the MTX and by then we had discovered RBF and AP. We asked him about an oral antibiotic. He said if you want to try an antibiotic it was fine with him and he prescribed Minocycline 50 mg twice a day…that was Dec 18 06. He also said we might want to go to Duke or Cleveland Clinic or U of Pittsburg I think. Four weeks later we were back and he discontinued the MTX because it had shown no progress and instead started Cuprimine which I have been taking for 3-4 weeks now. Dont really notice any difference so far. He also switched me to Minocin (brand, not a generic) at our request 100mg twice a day and I am still waiting to get it. The Mobic has definitely eased the face and joint pain I think.

The extreme weakness was because I had steadily become anemic more and more since Feb. I began taking iron Vit D Vit C Magnesium (but not near the MIno or anything else) and anemia has improved.

So currently my hands are still tight and hurt all the way up my arms to my shoulders as they have for months but seems to be no organ involvement and I can still open my mouth eat and swallow ok. I am taking acidopholous and a probiotic 2-3 times a day to avoid yeast and eating less sugar and more veggies again.

It was the article on root canals on rheumatic.org http://rheumatic.org/teeth.htm that made me think maybe there was a connection. Anybody else have dental work shortly before getting sick with RA or Sclero? And am I correct that patients have had better results with Minocin than Minocycline?

We have learned so much from the postings on this board, look forward to reading them and thank everyone for caring so much and for all the support they give to everyone.

Thanks

Sandi and Wy

[Cheryl F]

Sandi,

Welcome, I don't have a specific answer to your question, but I can tell you that many patients associate the onset of their illness with a dental adventure (infection).  There have been many posts in the past regarding this subject.  If you are brand new to the Road Back Foundation Bulletin Board, you may not know that this is a new bulletin board that has only been implemented in the past week.  The old bulletin board has search able archives which contain many posts about the subject that you are inquiring about.  We are in the process of cleaning up the archives and they will be available for searching soon.  Hopefully, some members will step up to give you input on your question.  Please check back when we are able to post the archives, there is a wealth of information and they will be available soon (I hope).

Cheryl Ferguson

[Cubby]

I have no proof, but I will always believe that my Scleroderma was caused, or at least triggered by a dental infection.

[Author]

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