Guest guest Posted July 27, 2000 Report Share Posted July 27, 2000 Hi Carmela: Sign me up as one who definately reacts to chemicals and flairs immediately if exposed to certain aerosol pesticides and adhesives. Within 10 min I have no voice and have shortness of breath. Speaking for myself there definately is an environment and emotional trigger to my RP. Are you on any Ibuprofen or anti-inflammatories. I forget if you take them regularly. I know that helps me alot but watch out for the tummy. If you go on antibiotic, see if Doc might try you on Minocin pellets name brand. Dr. T and my other docs feel it may be helping me do so well. I know it also helps keep my fibromyalgia in check. If I stop that, boy I ache all over. That is also consistant with my developing little ulcerated areas on my face and legs. I think that is related to the vasculitis, but only presents when I don't take the Minocin. Research is showing that Minocin is helping some people with Rheumatoid arthritis and autoimmune disease. Hang in there ok. This group will help sooooo much and you will continue to learn. Educating ourselves is the best preventive medicine I have found and then we can arm ourselves against docs if they won't help. Fortunately I have now found a couple docs who are great and there for me. I'm praying for you and others in the group. Lu, I hate to see your posts about so much pain (and everyone elses of course). Thank goodness God gave us each other to stand by and be there for each other. Knowing others know how it feels in some ways makes going through this somewhat tolerable, or at least much less scary. My best to everyone and prayers for a good nights sleep. Cath Carmela Oliveri wrote: Hi Elaine and everyone I'm glad that you will start tapering off and i hope the metho with also help you... had you asked for your medical records to be transferred to your rheumy in writing? it may be a good idea, as there will be a record of it, should you need it. i found it interesting when you mentioned that your doctor has been seeing more and more ppl with RP... as i was thinking just the other day as to why i flared... it all started with renovating the bathroom all the old tiles and wood and stuff came off (it's an older house) and new tiles and stuff back on... there was a lot of dust and fumes for grout, cement, silicone caulking etc. and i can't help but wonder if some of the RP cases can be environmental?... not all allergy tests can reveal what we may be allergic to or not, as we breathe in dust and fumes... i can't help but think this is a great possibility... are there any studies which cover this aspect of RP? if so, i'd like to hear about it and perhaps bring it up to my rheumy in case there are specific allergy tests that can be conducted vis-a-vis environment and RP... love Carmela ) ******************************************* > >Reply-To: Rpolychondritisegroups >To: <Rpolychondritisegroups> >Subject: My Rheumy visit. >Date: Thu, 27 Jul 2000 08:55:19 -0700 > >Hi all, >Went to the Rheumy yesterday. He wants me to start tapering my prednisone >and if I flare I'm to see him right away. Being I have to drive an hour to >get to his office that should be interesting. Anyhow he confirmed it was >Rp. I was the second one in his office that day with it. He said he hardly >ever saw it before but he's seen 5 people this year with it. Strange hey! >Maybe it's being diagnosed better now. Anyhow he says that I will probably >have to go on methotrexate. Can anyone tell me the side effects of this >drug. It was an interesting visit. He never even asked me if I was >depressed this time. He also said that my doctor didn't send him any info >on me. Strange, I wonder why. I'll have to talk to the doc about that. >Elaine ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com DISCLAIMER!! WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
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