Question:
Janers, Forgot to tell you I did start on 50 mg everyday for one month then went to protocol of 100 mg everday because I am extremely drug sensitive and allergic to many!!! Hope this helps , socjog
Response:
Hi Janers, Oh so sorry I was unable to respond sooner! Gal here LOL !!! Plus NO expert just a patient that did well !!! Yes, I too have overlap of MCTD/Lupus and scleroderma for 20 + yrs long standing . I am on minocycline by Lederle ONLY (this is timed released or minocin the brand is also ) . Yes, I have joint involvement and erosion in both wrists which is halted now since on ab therapy! There are 2 sites online they are : http://www.roadback.org http://www.rheumatic.org Both are free and have message boards emails etc. You can post and talk to others who have similar complaints etc. These are antibiotic sites I would first ask your DR if he is currently treating patients with antibiotics. If not he might not be current on protocols, dosage, specific instructions, etc.! This DID happen to me and I lost 6 mths on the wrong protocol. I was seeing a really well known rheumy too! He was only using the therapy limited in his practice and not supportive of it at all! I had to beg for it! When I said to him give me a good reason why NOT to try this then he agree! Its benign what is there to lose versus gain! Good luck and feel free to email me. I have studies if you need and I would print them and bring them with you along with protocols you can get at the sites I mentioned. Keep me posted, socjog
Response:
Janers, For Lupus patients, you may wahnt to try doxy( vibramycin) Its just a thought If you plan on the 3 day protocol, than Minocin is better and will stay in your systemlonger as it is time released( only the brand and the Wyeth-Lederle generic. Marge Marge
Response:
Hi I am not socjog but try Http://roadback.org. This is a new site and has some great info to help. I Have been on it for 3 1/2 yrs and reallyfeel so much better. The brain fog has left as did the migraines and I have been off cortisone( prednisone) 2 1/2 yrs. and MTX 2 yrs. Let me know if you have any questions Marge Marge
Response:
HI janers, i reread your post.The fatigue was the first thing that I noticed improvemnet in.I no longer need to plan a day I can do what I want without rest periods. I did have joint pain took Vicodin. Pnly take Tylenol for whenI really overdo. have not taken Vicodin in years. Take Care Marge Marge
Response:
Hi, Need a site on the antibiotic treatment. I go to the new rheumy this tues and I want to print out some information about this. I have MCTD with an diag of overlap lupus Raynauds and anticardiolipids. So I am on medro right now and have been reducing, with the help of rheumy. I am on low dose and do not want to start on the CO2 again because they did cause my BP to go up and I am fnally off betablockers too. I do not take anything for BP now and it is good. So again I am thinking maybe the antibiotic therapy. Did you or do you have joint involvement. That is the worst and the fatigue. I read where you are doing good and I need your expert opinion ha ha. Say you a guy or girl it makes no difference but the name throws me, but not too far lol. Thanks — JANERS
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