Guest guest Posted November 12, 2002 Report Share Posted November 12, 2002 Sherrie, welcome to the group. You have found a wonderful place here. Also welcome to the other new members who we haven't heard from yet. Please, I hope you all will just jump right in and ask all the questions you want. Someone will help you out here. Sherrie, I'm so sorry you are going through all of this. I'm sure all of us relate to your story. It sounds to me like the pain in your throat by your rib cage is your tyroid cartilage. I don't know and i'm no doctor. I know if I press on my cartilage there, over your adams apple and down, it is very painful. Have you gone to our Foundation site at www.polychondritis.org? If not, you should. You will find articles there that might help. Copy them and take them to your rheumy. There is Dr. Karin Harp's article under " links" and then click emedicine. Dr. Buckner and Dr. Trenthams articles are under "Information" or "Articles". It is so hard to know what to ask. Also look at our Brochure at the site. If you would like us to send you some Brochures to give to your drs. please just let me know and i will send you some. I was on Vioxx and pred at first and it just didn't stop my flares. They had to add methotrexate to the pred. We are all different and all take a mixture of different drugs that help us. Right now I'm on pred and Plaquenil. This does not work for some and as you will see there are a lot lof different options. I think metho and Imuran are the drugs of choice along with the prednisone. Then there is Cytoxon, Remicade, Arava etc. The list goes on. Don't give up hope. Caught early and with the right medications RP can be controled. Remembe with each flare some damage can be done, so you will want to get on the right medications as soon as you can. Please keep asking questions and sharing your experiences with us. This is how we all learn. We do have other members in Michigan. Maybe they could help you with a rheumy that knows about RP. Looking forward to getting to know you better. hugs in Calif. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2002 Report Share Posted November 13, 2002 Sherrie It is so hard with the RP. No one understands because they can't see the damage that is it does. The only reason that my family saw I was sick was due to the meds that I had to take. The pred kind of bloats you all out. Now to look at me you wouldn't know I even had it. Another reason it is hard for others to deal with is due to not know what to do for you. Stick with us girlfriend we know all about it. We care and we understand. That is why this group is so great. There is always someone there that has gone through it or is going through it the same time you are. As for your sister who is the RN she should understand more than the rest. She has the information in front of her about RP. If you want to learn more about RP go to the foundation website there is lots of info there. You are lucky your family stayed close. My daughter moved to Hawaii and my son lives in Michigan. Son lives in a little town out of Detroit called Monroe. Do you know where that is? Thank God we have the little one to keep us busy or I would really miss them. When I was first diagnosed with RP it was a major chore to work. I did it but think back and wonder how I did. Now I lead a fairly normal life,(well for me) I work 40 plus hours a week and take care of family and home. Sorry to write a book but just wanted you to know we care! Lots of love Glenda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2002 Report Share Posted November 15, 2002 Sherrie, most doctors haven't even seen a case of RP, unless they were lucky in med school. At least that is what I have found here in Calif. The ones that say they have seen it have only seen a nose or ear flare and they believe that is all it will involve. I can't tell you how many drs. I have seen that say " You can't be having a flare, your ear isn't red and your sed rate is normal". BAH!!! My current rheum at my last visit wanted to see me in a flare and told me the next time I flared to come and show them. Well, how do I show him my rib flaring.?? LOL I'm going to post him today and ask him....maybe I could just sent a rib by Fed Ex. LOL How were you suppose to show them your hearing loss? Education to the medical profession is SO important and the is what our job is. I was on vioxx and pred too for a while and then it just stopped working and they added metho. Get all the info you can and help your doctors learn. Many will take the time to read and listen. Tell them you will make them famous when they are the ones who find the cure! LOL Thank you for all the information you are sharing with us. Don't give up and don't be afraid to find another dr. if you aren't getting anywhere with your present 18 year old. LOL Know we are all here for you. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2002 Report Share Posted November 15, 2002 Sherrie If you have any tests done where they have to put tubes down your throat make sure that they use a smaller sized one. This is due to if you have RP in that area that it doesn't irritate it anymore that they have to. If you are flaring they shouldn't be lowering the pred. Pred is what keeps the inflammation down and the damage down also. Pred is a nasty drug but at least it is a life saver for us. Remember I am no dr. and I am just stating how I feel. I hope and pray that the dr.'s you have read up on RP and get yours under control. Lots of LoveGlenda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2002 Report Share Posted November 21, 2002 Sherrie, yes they freeze it, but you still feel it and you feel it even more after. lOL It is better today, i'm just a littl hoarse. hugs Do they freeze your throat so you don't feel it ???? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2002 Report Share Posted November 26, 2002 Sherrie Are you talking about rib pain? I think this discussion was had once before. Here goes on my end. It is all I can do to wear a bra for the 9 hours a day that I absolutely have to. The minute I get home from work it comes off. Who ever invented them didn't take RP into account.LOL I have even tried the sports ones without any luck. Some of the others had inventive ideas but I just can't remember them. Hope it gets easier for you. Lots of LoveGlenda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2002 Report Share Posted December 4, 2002 Sherrie, yes this makes perfect sense to me. I have the same thing some days. Its hard to even leave the house my bones are in pain does that make since?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2002 Report Share Posted December 6, 2002 Hi Sherrie, I started on 60mg of pred. in July and it is now reduced down to 12 1/2mg. I also have 2 other autoimmune diseases, Polymylagia and termporal arteritis. You said it has also affected your nose, is it traveling that fast, or did it take awhile for the doctor to diagnose and treat you. I think I was diagnosed very quickly. Four doctors concurred with the diagnoses, so I assume it is right, but I had no biopsey done. I was from Troy, Mi. Grew up in Ferndale then moved to Troy to raise my family. We still go back regularily and visit. We go to Lansing at times to visit friend Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2002 Report Share Posted December 17, 2002 Sherrie No wonder you are stressing out. Trying to watch your weight and trying to stop smoking. Both of those are enough to set anyone off. I admire you! I still smoke have tried to quit several times. You keep up the good work and take a day at a time. I give up on the weight!LOL I have always been big. Not over weight just big. The meds we take sure don't help the weight. Didn't you know you joined the group of fluffy people?LOL I would have loved to go to work with my Dad. I was his namesake, well kind of and I was his boy. I was the middle girl of three. I used to help Dad with everything. Haul wood, mend fence, remodel the house you name it. My Dad was short and stalky but strong as an ox. I think I got some of his characteristics except the short. Even today I am able to do more than most women do. My husband always says that the women he works with can't lift or move things like I do. I always have to laugh and remind him not all women were a tom boy!LOL Don't worry right now about not being able to do like you did. Take a day at a time. You will get to feeling better and start having better days. I may not be able to do things the way I used to but I still can get it done. Of course I am just a little stubborn!LOL Know you are in my thoughts and prayers. Lots of LoveGlenda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2002 Report Share Posted December 27, 2002 Sherrie, I have been on methotrexate for four years now, since I have been on it I have been MUCH better. I am not so short of breath all the time, and although I have slight tracheal narrowing it has not got any worse during that time. Coincidentally my ent popped that thing up my nose last week, but fortunately although my voice is often croaky there is no permanent damage to my vocal chords. I started on a low dose of metho and worked up to 17.5mg per week. I take half the dose in the morning and half in the evening. I have been fortunate not to have had problems, i.e. nausea. I do get it occasionally now; it is very important to drink lots of water and I find it helps to eat low fat, especially on metho dose day. Most docs also prescribe folic acid as it minimises side effects and it is important to get your liver functions checked regularly; oh and not drink alcohol if that is something that you do. That can be a drag but its worth it for your liver's sake!! Good luck, and let us know what is happening. Love Liz Quote Link to comment Share on other sites More sharing options...
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