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- This topic has 12 replies, 8 voices, and was last updated 16 years ago by Rhonda.
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March 9, 2008 at 1:15 am #299927AnonymousParticipant
HELLO OUT THERE-
I have had RA for 8 mos, and not much has been helping inthat time.
I've tried Melthyltrexate for @ 8 weeks with no results, till I just got weirded out.
It makes no sense to supress the immune system in exchange for 'possible' temp relief.
I have fired 3 Rheumos until finding one that was willing to Rx Minocin (“since it can't do harm”. Did the min for @ 7 weeks with no changes (2 daily, not 'pulsed') with not much change either.
Hired a new doc whom actually ordered the mycoplasm testing from the Arthritis Inst. in Baltimore. …she Rx Doxocycilin, pulsed M W F 2x daily…this only gave me a regular acid stomach. …the only thing that helps me get by is 'Indocin' for the pain (hands. hips, shoulders, and feet}.
Got a new Doc and I'm about to switch to Clindomycin 'daily for 10 days' (orally, since I heard it is very readily absorbed)since I felt some relief with clindo after taking it preparatory to a tooth extraction@ 2 mos ago ….QUESTION: …
…HAS ANYONE HAD ANY POSITIVE RESULT WITH CLINDOMYCIN (ORAL OR IV) ?
March 9, 2008 at 1:21 am #310048Cheryl FKeymasterAllan,
Have you taken the opportunity to read the book, The New Arthritis Breakthrough, by Henry Scammell? This book also contains, in its entirety the book, The Road Back, by Tom Brown. There are many examples of the use of IV Clindy in this book.
There are many people who visit this board regularly that use the IV clindy, they will be able to share their experiences.
Cheryl
March 9, 2008 at 3:10 am #310049KimParticipantHi Allan,
I agree with Cheryl that reading the book is Step 1. Having said that, my experience with Clindy is that the IV was more effective than the oral. The oral combo that has worked best for me is Minocin and Zith.
Good luck…Kim
March 9, 2008 at 3:58 am #310050Cheryl FKeymasterJess just saw her new AP doctor Tuesday. Overall, it was a good appointment and we finally got an RX for the Zith mino combo, I had been asking her prior AP doctor for this combo with no success. This time I didn't even have to ask. Dr. F also wants to do the iv clindy, but due to a pretty severe allergic reaction when she did iv clindy in 6/06, he wants to desensitize her to the clindy, 10mg at a time, I guess it will be like allergy shots.
Cheryl
March 9, 2008 at 4:05 am #310051AnonymousParticipantCheryl,
How are they dosing the Minocin and Zith – alternating days? Is the Minocin 100mg BID?
Christopher may need a change in regimen.
Denise
March 9, 2008 at 4:17 am #310052Cheryl FKeymasterDr. F kept Jess on 100mg of mino twice a day. He added the Zith, but I haven't filled the RX yet and don't remember what he said about the Zith dose.
Cheryl
March 9, 2008 at 6:36 am #310053lindaParticipantIndocin is very hard on the stomach, about as bad as naprosyn (aleve). It is probably contributing to your stomach problems. Try asking your doc whether or not you should be taking an NSAID that is a cox-2 inhibitor, like celebrex or mobic. They are much safer for your stomach. I've forgotten, did you say whether you are taking probiotics? They are necessary if you are on long term abx.
linda
March 9, 2008 at 6:23 pm #310054AnonymousParticipantThanks for your feedback on the Clindy guys. I had McPhearsons book, but only got 1/2 way through it before it disappeared- got to get a new one.
The problem is I had to go thru 3 Rheumys and 2 GPs just to get the Mino and the oral clindy…I guess I gottta keep looking- I'm in NYC ,,,
Also re: the Indocin – it was better than the Celebrex which doesn't seem to work anymore, …so I guess next try will be 'Mobic' – Thanks…
I also started the Oral Clindy last night, this too is rough on the stomach too –
Good health to you all- Allan
March 9, 2008 at 7:05 pm #310055AnonymousParticipantPS…
…Does anyone know of an MD in NYC that would consider Rx ing and administering Clindamycin IV ???
March 9, 2008 at 7:05 pm #310056lindaParticipantI feel your pain, Allan. I've had to stop taking abx until I can move to an area where I can get it IV because of stomach problems. Very frustrating. Maybe you could keep taking the Indocin if you added something like Nexium. Then of course you're caught in that 'taking meds to treat the side effects of other meds situation.':headbang:
I've made some dietary changes that seemed to have helped; I no longer eat dairy or gluten products. Well, mostly I don't; the ice cream is tough, even tho soy ice cream is good, sometimes I just need the real deal. This was a tough choice for me because I was such a carboholic, but the adjustment was easier than I thought it would be. Also, I also am not a big fan of supplements, but someone a few months back told me to try taking deglycyrrhizinated (DGL) Licorice Root Extract, and it also is helping. It has to be DGL because glycyrrhizin causes high blood pressure. I was surprised because I've never had much luck with supplements. A piece of advice if you try it, don't get the chewables-this stuff is sickly sweet. :sick:
Most of us have been down that finding a doctor road, too. Emotionally, we've all become pretty good at overcoming obstacles; if there was an emotional obstacle course sport, we'd clean up! 😎 I know there is an excellent Dr. in Boston, but I don't know how far you can travel. The great news is that you've only had RA for 8 months; since you're starting AP early in the disease process you'll do very well on AP once you get the bugs worked out.
linda
March 9, 2008 at 7:53 pm #310057MazKeymasterHi Allan,
If you go to the main board, the second thread from the top provides info to request an AP doc. You can try this link to see if it takes you right there.
http://www.rbfbb.org/view_topic.php?id=54&forum_id=1
Peace, Maz
March 10, 2008 at 12:36 am #310058GoodwifeParticipantMy hubby had the best results following this trial and error protocol: Mino was 200 mg daily for 6 months – wasn't happy with daily dosing , switched to pulsed mino MWF 200/day and the full 10 IVs at the six month mark of mino, and then 'booster' IV 2/month. This combo seems to worked really well for him – still some improvements needed, though. Regarding the zith, I think I remember reading different people who either pulsed the mino MWF or daily mino, then the zith 1/week. Good Luck!
March 10, 2008 at 6:30 am #310059RhondaParticipantAllan,
I would be careful taking Clindy orally, I think the reason why it is given through IV's is that this bypasses the stomach and goes directly through to your blood system. Clindy is very harsh on the stomach more so than the other antibiotics, my mother got c-dificil while taking clindy orally. I would not recommend taking orally. Just my opinion.
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