Guest guest Posted September 15, 2002 Report Share Posted September 15, 2002 Phyllis, sounds like an angel... I know you and your husband would do anything for him. How it hurts us so when our children hurt. I know what you mean, I would take their pain in a minute. We have other young people who have RP. Cyrus, Gabby, and Marie Pia's three children. I think Gail McClary, Cyrus's mom could give you lots of information too. I will send her a post and see if she can contact you. Know you have lots of prayers comin your way. If you need anything, just don't hesitate to let us know. hugs & prayers << Mom I would never want you to hurt like this, please don't ever say that again " >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2002 Report Share Posted September 15, 2002 Phyllis Don't apologize to us we understand completely. That is why we all get along as well as we do. I can't even imagine having a child with this. And like your son can't imagine wishing this darn ole RP on anyone else. Tell your son that we are all pulling for him to and that the metho starts working for him. Lots of Love Glenda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2002 Report Share Posted September 16, 2002 Thanks Liz Everyone at this site are so helpful was on Plaquneil but just started on Meth 20mg and Pred 32mg. stillhurting in his chest , back and head The rheumy took himoff Plaq when he found out that he had RP/ he was on it for MCTD Thanks again Phyllis 's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2002 Report Share Posted September 16, 2002 In a message dated 9/16/02 8:46:41 PM Pacific Daylight Time, pfwz28@... writes: << he was on it for MCTD >> Phyllis, what is MCTD? Just interested because I'm taking Plaquenil. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2002 Report Share Posted September 17, 2002 a, It stands for Mixed Connective Tissue Disease, when you have more than one autoimmune disease(rheumatolagical diagnosis) or one that they can not positively identify then they call it 'MCTD " Plaquenil is an antinflamaotry. it is being used alot with Rheumtaloical disorders it was used years ago for and still is for malaria I'm sorry sometimes I forget and abbreviate things when I type fast I am a nurse sometimes this doesn't always benefit the docs think I should be the one monitoring some things they should like instrutionto him on diet and exercise. He is stilla teenager and doesn't always want to listen to Mom I hope this helps some Phyllis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2002 Report Share Posted September 18, 2002 Phyllis thanks, I should have known this, I have it. LOL Just didn't put the abbrev. together. There are a lot of other nurses in the group. I know it must be harder for you. Give our best... and tell him to post if he wants. We are here for him too. Please let us know how the metho is doing. We have you both in our thuoght. hugs << It stands for Mixed Connective Tissue Disease, when you have more than one autoimmune disease(rheumatolagical diagnosis) or one that they can not positively identify then they call it 'MCTD " >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2002 Report Share Posted September 18, 2002 Phyllis, We abbreviate stuff all the time. Sometimes we just don't remember what we abbrev. is lucky to have such a great Mom. Know what you mean about them not wanting to listen to you all the time. Sometimes it is hard for even us adults to listen and do what we are suppose to. It is hard having an illness that no one knows what to do with and wants you to take meds or change your life style. I have learned that you must do what the dr. says or suffer the aches and pains latter! I am so glad you found us! I really enjoy your posts! Lots of love Glenda Upgrade Outlook® - Add COLOR to your Emails Outlook® is a registered trademark of Microsoft Corporation Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2002 Report Share Posted October 3, 2002 Phyllis It has to be hard for you just watching your son in pain. If has been on the pred for a long period it is not good to drop the pred fast. It can cause him problems and there are people in the group that can tell you some bad stories about that one. It sounds like you need to go shopping for a new dr. Just because you don't see a flare doesn't mean you are not flaring. The last visit I had with my rheumy I was flaring and he asked me to get some blood work done just to make sure all was well. I said okay but it wouldn't show anything and he said you are right but at least I can see if your meds are not causing you problems. At least he admitted you can't see a flare. Blood work was to make sure the Imuran wasn't causing any problems of it's own. Remember that this is my opinion and nothing else...but it sounds like they need to work a little harder trying to get under control. 30 mg is not that high a dose of pred and some of us take higher doses to get things settled down with the pred. I will be sending good thoughts and prayers and your families way! Please keep us posted we want to know. Lots of love Glenda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2002 Report Share Posted October 5, 2002 Phyllis, gosh I understand your situatiion with . I think I would be looking for a second opinion too. I know a lot in the group have gone to Mayo, Cleveland Clinic and some other big places. I went to Stanford. Being that is so young, it might be different. Please take care and let us know how things go. There isn't a lot on RP and young ones. I'll keep doing what research I can. You might even think about contacting Dr. Buckner by e mail. I have her addy if you need it. Lots of prayers are being sent your way. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 Phyllis, it is so good to hear from you. How is doing? I know you have to be so busy. I just want to thank you for such encouraging words to Sharon. Your post was wonderful. It sure helped me. I think I was in need of a reminder and your post did the trick. You made my night complete. Please keep us updated on and YOURSELF. It has to be so hard on you. I think it is twice as hard on family members. You have to feel so helpless at times. Just know that we are always here for you and you and your family are always in my thoughts and prayers. hugs Sharon, I'm so sorryf or this to have happended to you! I know when you are sick you just automatically assume all of your family esp children will understand.. sorry to say that isn't always true.. sounds like your daughter has a little soul searching she needs to do..but for RP stress is not good...I do not know her but she may be in denial about your pain or RP(understanding it is hard) alot of our family wasn't supportive when we found out has RP. (my 16 year old son) that broke my heart but I have had to learn to accept it..he has been so sick for 4 years now..he would have months to a year in remission(this was before we knew what he had) but it seem s the ones I just knew were mature and supportive , aren't..funny my son who is the least responsible helps the most. As for religion we are southern Baptist, but we still had a hard time with people not really understanding how severe ;s pain is..I quess if there is a cast on the part of your body that hurst people think you are hurting but , they can't see it they doubt it, One thing I do know is God did not promise those who follow Him /pain free days and a llife in which Adam and Eve only once knew.. If we didn't have trials and tribulations would we need Him ..how often would we pray? He pulls us through our valleys and we are so much stronger for them, His Love never fails us, He is patting us on the shoulder on the bad days, hugging us and the same on the good days, I will pray for you your family and your daughter, also for the church, remeber a church is just a building if God isn't there. So many church members are members of a building (that is sad thing)!! God can turn her head and heart but it may take some time be ready to be patient but remember you do not have to prove your are sick to anyone God knows and He knows your heart! Love in Christ! Phyllis Quote Link to comment Share on other sites More sharing options...
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