Guest guest Posted December 4, 2000 Report Share Posted December 4, 2000 I upped the pred to 15mgs and I'm okay now. I had lots of pain for two weeks before that too. I see the Rheumy this week and I guess we'll have to disguss meds. I just can't seem to get under 15mgs without problems, even at 15 I still have some pain. Elaine Rene here, Let me know, what course of action or drugs your doc prescribes, may be it will help me, since I seem to be having the same problem w/lowering my pred.ears. Every little bit of info is helpful Take care and glad that u are feeling better. love Rene' Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2000 Report Share Posted December 4, 2000 Hi Carolyn, Sorry it took so long to reply. I haven't been on line for three days. I was down to 7.5mgs of pred and on Thursday evening my ear turned bright red and started to swell. I upped the pred to 15mgs and I'm okay now. I had lots of pain for two weeks before that too. I see the Rheumy this week and I guess we'll have to disguss meds. I just can't seem to get under 15mgs without problems, even at 15 I still have some pain. It was a ER doc that thought I had TMJ. I have the pain right now in both my jaw joints, especially the side where my ear is plugged. I knew it was my ears but they wouldn't listen to me. I do have sinus problems but I can't take decongestants because of high blood pressure. I will ask for a steroid nasal spray. Is flonase good or can you recommend another? The whole ear thing makes a lot more sense and I always wondered if they could see my whole ear just by looking in it! Guess I should start saying how I feel. LOL won't they get a ear full!!!! I can't remember what it was that I didn't know. I think it might have been about no pain nerves in cartilage. Thanks Carolyn for sharing your knowledge with us I am so grateful Thanks again, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2000 Report Share Posted December 4, 2000 , Will we ever find out who is right with RP? If I do I will certainly let you know. Re: Elaine - Ear Plugged Elaine, I also have pain on the side of my face. But I also have TMJ. There is absolutley no cartiledge left in my Jaws. My ears are plugged now and only a little pain, sometimes it's worse. According to my drs. my ears are fine too. When you find out who's right, please let me be the first to know.LOL Hugs] C - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2000 Report Share Posted December 4, 2000 Glenda, You are sooo funny!!! LOL!!! What's with some of these docs. Do they think we have nothing better to do than complain about little things! If I complained about the little things as well as the major things I'd need a three week appointment!!!! They just don't get it do they. Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2000 Report Share Posted December 4, 2000 Elaine You got that right. If we complained about the little stuff we would drive them crazy!LOL Wonder if that is what we should start doing.LOL Lots of Love Glenda --- Elaine Thurber cottage@...> wrote: > of what I hear.LOL I will use my good ear.> > > Glenda, > You are sooo funny!!! LOL!!! What's with some of > these docs. Do they think > we have nothing better to do than complain about > little things! If I > complained about the little things as well as the > major things I'd need a > three week appointment!!!! They just don't get it do > they. > Elaine > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2000 Report Share Posted December 4, 2000 Better health! Love Carolyn Carolyn, I never thought about this, but u can write ur own prescriptions can't you. (LOL) hmmmmmmm! It must be nice. Do u have a lot of problems when u go to the doctors. Being who u are and that. Is it harder for u? I imagine if I were in ur shoes, the docs would probably have a rougher time w/me. I guess the only reasons I brought this up, I need more medicine from my doctor and I have to wait to call her tomorrow. What a bummer. Didn't know expirations dates were here already. Seems as if time is flying. Take care Love, rene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2000 Report Share Posted December 4, 2000 > I do have sinus problems but I can't take decongestants because of high > blood pressure. I will ask for a steroid nasal spray. Is flonase good or can > you recommend another? The whole ear thing makes a lot more sense Hi Elaine. Sorry you're still not doing too well. Any of the steroid nose sprays should be fine. Flonase is good. When you take it be aware that it probably won't work fo several weeks unless you're one of the lucky few that have a faster effect. In fact, you may not notice the difference because it can come on so gradually. I told my pts to assess every week and see if it was better than the same day the week before. Start with the full dose. After you've have the max benefit (can take quite awhile) stay on the full dose for another two weeks. If you really want to try for the lowest dose possible (wouldn't recommend this, especially for those of us with RP) do not drop the dose any sooner than once a month. It was really common for pts to come in with new sinus or nose problems that needed treatment only to find out that they'd stopped their nasal steroid inhaler 1-2 months previously. My best recommendation is to go on the full dose and keep on it. If you can't use decongestants then you really should do the nasal saline irrigation I sent out a couple of days ago. Faithfully. I think it'll make a big difference in the long run. Unfortunately it's hard to measure how much prevention helps --unlike having asurgery or something-- but in this case it's the FAR better way to go. Just consider that we have an ENT system that needs special care to even have a chance at not crashing. Better health! Love Carolyn RE: Elaine - Ear Plugged > > Hi Carolyn, > Sorry it took so long to reply. I haven't been on line for three days. I was > down to 7.5mgs of pred and on Thursday evening my ear turned bright red and > started to swell. I upped the pred to 15mgs and I'm okay now. I had lots of > pain for two weeks before that too. I see the Rheumy this week and I guess > we'll have to disguss meds. I just can't seem to get under 15mgs without > problems, even at 15 I still have some pain. > > of the jaw (yes, and you can feel it in the angle of the jaw, whoever's doc > had thought it was TMJ)> > > It was a ER doc that thought I had TMJ. I have the pain right now in both my > jaw joints, especially the side where my ear is plugged. I knew it was my > ears but they wouldn't listen to me. > > getting on a steroid nasal spray> > and I > always wondered if they could see my whole ear just by looking in it! Guess > I should start saying how I feel. LOL won't they get a ear full!!!! > I can't remember what it was that I didn't know. I think it might have been > about no pain nerves in cartilage. > Thanks Carolyn for sharing your knowledge with us I am so grateful Thanks > again, > Elaine > > > > > 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...
Guest guest Posted December 4, 2000 Report Share Posted December 4, 2000 Hi Rene! Well, I suppose I could write my own scrips but that just isn't done. So I call for refills, etc just like you guys. And, like everything else, seeing a fellow doc is both better and worse I think. Better because I can speak "medicalese" and present the information in the way they are used to hearing and thinking about it -- which when things are complicated (like for most of us with RP) makes a big difference. In fact, I write upan outline that pretty much follows the order that they'll have to write up the H & P in which I think helps a lot. But definitely worse, I think, when theythink you're crazy and are doing something funny to your ears -- it's not just your doc but then your colleague and friend/acquaintance too. Oh, guess I could go on and on, but you get the idea. Love Carolyn Re: Elaine - Ear Plugged Carolyn, I never thought about this, but u can write ur own prescriptions can't you. (LOL) hmmmmmmm! It must be nice. Do u have a lot of problems when u go to the doctors. Being who u are and that. Is it harder for u? I imagine if I were in ur shoes, the docs would probably have a rougher time w/me. I guess the only reasons I brought this up, I need more medicine from my doctor and I have to wait to call her tomorrow. What a bummer. Didn't know expirations dates were here already. Seems as if time is flying. Take care Love, rene 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...
Guest guest Posted December 5, 2000 Report Share Posted December 5, 2000 Glenda, Sometimes I think that they think we are complaining about the little stuff. I don't think that they believe that, that much can be wrong with us and we are still going. Maybe that's why they shrugg a lot of it off, or maybe they just don't know. Does this make any sense? Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2000 Report Share Posted December 5, 2000 Elaine It makes perfect sense. That is why I don't call the dr. unless I am almost in dire straights.) Just wish that the dr. would understand us. Would make life a lot easier. Take care my friend. Lots of Love Glenda --- Elaine Thurber cottage@...> wrote: > stuff we would drive them crazy!> > > Glenda, > Sometimes I think that they think we are complaining > about the little stuff. > I don't think that they believe that, that much can > be wrong with us and we > are still going. Maybe that's why they shrugg a lot > of it off, or maybe they > just don't know. Does this make any sense? > Elaine > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2000 Report Share Posted December 8, 2000 > I do have sinus problems but I can't take decongestants because of high > blood pressure. I will ask for a steroid nasal spray. Is flonase good or can > you recommend another? The Be sure and do the nassal saline religiously too Elaine!. Flonase is good -- they're all good pretty much except different potencies so the number of times you do it may be different. The more I think about it the more I think we with RP should get on the full dose and STAY on the full dose of the steroid nose sprays. THat means NOT STOPPING!!!!! > Thanks Carolyn for sharing your knowledge with us I am so grateful Thanks > again, > Elaine > And I'm very grateful that you're willing to go through the trouble to make me angels during this busy time of the year. It's my one and only thinkg I've done for Xmas so far -- those angels! Thanks and love to you Carolyn ----- Original Message ----- Quote Link to comment Share on other sites More sharing options...
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