Guest guest Posted September 14, 2002 Report Share Posted September 14, 2002 Phyllis, Glad to see you joined in! Sorry to hear that your son has RP. Too bad that they didn't diagnose him sooner. Hopefully they have him on the right treatments now. There are a few in the group with children that have RP. I am sure they will post you soon. This is the greatest group of people you will have the opportunity to meet. It is like we all have known each other forever. (even when we got to meet in person) Feel free to ask all you would like or just to rant and rave. We are here for each other no mater what the problem! Take care and remember we are here! Lots of love Glenda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2002 Report Share Posted September 15, 2002 Glenda, Thanks for the welcome! Yes I am very anxious to talk to others. You guys have already been a help withsomeof the mail I've seen . I noticed some people have had RP for years so I know they can be undersanding, noone inour area has it at least no one we have been told about. just started on Meth. and he is on 33 mg of Pred. every tim e we try to decrease it he flares. I'm praying the Meth will work! This flare has beeen going on almost the entire year without any signs of remisson. Before the episodes(we didn't know what they were )would last 4-6 months then he would have about 6mo to a year pain free. This time he had a terrible flare about 4 weeks ago we increased his Pred to 35 and he is improving now, just recently he can sleep. He complains withhis sternum this go around and hi chest wallpain. He keeps a headache 24 hours a day 7 days a week . They haven't found the exact reason for that one. Then he gets migraines on top of that headache/ his migraines are in better control now we started Doxepine/ the rheumy thinks if he is having myofascal pain it will help that too. I would love to hear if any one else has the back pain and headache with thier RP. Thanks, Phyllis('s Mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2002 Report Share Posted September 15, 2002 Phyllis, How old is your son ? M.P. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2002 Report Share Posted September 15, 2002 Hello Phyllis, Yes, I had daily headaches for months, before being diagnosed with RP and getting on enough meds. to start to deal with the intensity of the flare. I hope responds well to the Metho. Although my daily pain isn't gone yet, and I've been on it for about 6 or 7 months, it is much better and more manageable. My doctor and I are hopeful that it will continue to improve, too. Best of luck to you and , and welcome to the group! M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2002 Report Share Posted September 15, 2002 In a message dated 9/15/02 9:21:58 AM Pacific Daylight Time, pfwz28@... writes: << He keeps a headache 24 hours a day 7 days a week . They haven't found the exact reason for that one. Then he gets migraines on top of that headache/ his migraines are in better control now we started Doxepine/ the rheumy thinks if he is having myofascal pain it will help that too. I would love to hear if any one else has the back pain and headache with thier RP. Thanks, >> Phyllis, I had terrible headaches that would turn to migraines while on metho. I was on 25mg. I took it for a year. My dr told me that I had reactions to it that he had never seen before. I always react different to drugs though. I found the putting ice on the base of my neck/head really did help. And they got a lot better as my body adjusted to the metho. I do hope that it goes away soon for . He is too young to have to suffer. I also have the flares in the rib area and know how painful those can be. Hopefully once the right medication is found and the right dose, things will settle down and get back to normal for him. Does he flare anywhere else? sending hugs your way Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2002 Report Share Posted September 15, 2002 In a message dated 9/15/02 1:34:33 PM Pacific Daylight Time, dmorgan26347@... writes: << Hang in there it will take some time for the metho to kick in. I'ave been told that in some people it will take 3 to 6 months to start working really well. >> Dawn, this is a good point for all of the newbie to remember. A lot of the meds take that long to get started working in your body. Thanks for reminding us. Most of the time we want to see improvement ASAP. How is our flare doing Dawn? I hope it is getting better. I'm keeping you in my thoughts and prayers.. You get better girl. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2002 Report Share Posted September 15, 2002 In a message dated 9/15/02 10:46:47 AM Pacific Daylight Time, Gayraudmichel@... writes: << Phyllis, How old is your son ? M.P. >> Marie Pia, I believe he is 16. Isn't that how old Coralie is? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2002 Report Share Posted September 15, 2002 He is 16 how old is your daughter? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2002 Report Share Posted September 15, 2002 , yes, since he has been recently diagnosed we can look back and see the other symptoms he had were flares..nose, ears, inner ear, spine, rt. knee, rt. wrist, rt. elbow, rt. little finger, sternal area at the base of his esophagas, throat(he gets hoarse and says his throat is in pain,.We are praying the Metho works so we can decrease the pred. the newest rheumy we saw started him on 20 mg of Metho givenin shot form, he says we will work down once he is under control. Headache always comes with any other pain, too. a constant headache. yea we have vistited the ER twice for the rib pain he was on Morphine but it did not help now he takes Vicodin it takes the edge off/ it seems that anti-inflammatories make him worse???I wonder if that is my imagination?? Phyllis, 's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2002 Report Share Posted September 15, 2002 Do you have 3 children with RP? don't you just hate this disease we just recently got 's diagnosis everyone for a year now kept saying no it was to rare for him to have so in the menatime he got worse he has suffered this year so bad he had other episodes that would last 5-6 months go away and then come back that lasted 4 years we went every where no one until a year ago mention RP I di not know what it was. Would you mind sharing your child's history with RP with me? Thanks Phyllis 's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2002 Report Share Posted September 15, 2002 In a message dated 9/15/02 9:39:08 PM Pacific Daylight Time, pfwz28@... writes: << Do you have 3 children with RP? >> Phyllis, I sent your post on to Marie Pia. Yes her 3 children have RP. She lives in France. She hasn't had time to read all the mail, so I thought I'd just send yours to her directly. If by chance you write french it helps, I use a site that translate my posts to her to make it easier. But she does read, speak and write English. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2002 Report Share Posted September 15, 2002 Near, coralie is 15 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2002 Report Share Posted September 15, 2002 15 Quote Link to comment Share on other sites More sharing options...
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