Guest guest Posted January 26, 2002 Report Share Posted January 26, 2002 WEll, I upped my pred another 5 mg today, now up to 40 & 40. Went up to 35 & 35 last Sat because of the eyelid & throat swelling. My left ear turned warm, red & sore yesterday, the left eye is bothering me (hope it's not iritis again) & the right ear is sore. The tip of my nose is also sore. My throat was swollen again this morning. My feet and ankles are also swollen. They haven't been this bad since I had toxemia when I was pregnant 22 years ago. Doesn't matter if I put them up, they're even swollen in the morning. I hate to play with the meds but I don't know what else to do. I go to the rheumy on Monday & hopefully will start the Imuran. This is getting old real fast. I have spent the week crying because I am so depressed. Have been referred to a neurologist about the dizzy spells & falling since my PCP says the RP sometimes attacks the brain. I had an echocardiogram in July which was fineI & an MRI of the brain per the ophthalmologist which showed some ischemic changes caused by my high blood pressure so that has been ruled out for the dizzy spells. I have only felt well for about 3 weeks in October & November. Resting doesn't seem to help. I have been so good about that since it helped in October. I don't know what to do. I am so frustrated & no one can help because they don't know that much about the RP. I don't know what I did to deserve this. I know it seems like all I do is complain when I go on the board, but I just need someone to talk to that understands. I'm not handling this very well. I don't lilke being sick. Has anyone else been sick for so long with this. I've been on 60 of pred since Thanksgiving, went to 70 last week & am now at 80. Thanks for your shoulders, Susiecue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2002 Report Share Posted January 26, 2002 --- Ted Staniec wrote: > WEll, I upped my pred another 5 mg today, now up to > 40 & 40. Went up to 35 & 35 last Sat because of the > eyelid & throat swelling. My left ear turned warm, > red & sore yesterday, the left eye is bothering me > (hope it's not iritis again) & the right ear is > sore. The tip of my nose is also sore. My throat > was swollen again this morning. My feet and ankles > are also swollen. They haven't been this bad since > I had toxemia when I was pregnant 22 years ago. > Doesn't matter if I put them up, they're even > swollen in the morning. I hate to play with the > meds but I don't know what else to do. I go to the > rheumy on Monday & hopefully will start the Imuran. > > > This is getting old real fast. I have spent the > week crying because I am so depressed. Have been > referred to a neurologist about the dizzy spells & > falling since my PCP says the RP sometimes attacks > the brain. I had an echocardiogram in July which > was fineI & an MRI of the brain per the > ophthalmologist which showed some ischemic changes > caused by my high blood pressure so that has been > ruled out for the dizzy spells. I have only felt > well for about 3 weeks in October & November. > Resting doesn't seem to help. I have been so good > about that since it helped in October. > > I don't know what to do. I am so frustrated & no > one can help because they don't know that much about > the RP. I don't know what I did to deserve this. > > I know it seems like all I do is complain when I go > on the board, but I just need someone to talk to > that understands. I'm not handling this very well. > I don't lilke being sick. Has anyone else been sick > for so long with this. I've been on 60 of pred > since Thanksgiving, went to 70 last week & am now at > 80. > > Thanks for your shoulders, > > Susiecue > Hi Susiecue, I think we all have those times when we just do not know how to handle this stupid cRaP! I have been going through some really hard times lately also, and it just gets so old, and it is all so tiring. You seem to be having a really rough time, but hopefully getting started on Imuran will help. I have had only a few weeks of feeling well for the past two years. My RP attacks mainly my ears and I am one of the ones who gets bleeding lesions on my ears. I get so sick of never being able to just lie down and go to sleep like a normal person. I always have to be doing these tricks to keep off my ears. My joints are the next worst thing, and that bothers me almost as much as the ears. I think the only reason that I have fared as well as I have is that my doctor has me on so dang much medication. Then that scares me too! Geesh! It seems that it never ends. But, we have to look to those people who are doing well and let them inspire us. There is hope and there will be better days ahead. This is what I keep telling myself anyway! Sorry you had to raise your pred again, but you just gotta' do it sometimes. It sucks when you work so hard to get down, and then you have to raise it again. Take care of yourself and let us know what your doctor says on Monday. You can use my shoulder anytime, cause God knows I have sure needed big, wide, strong shoulders these past few weeks. Love, Sharon ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2002 Report Share Posted January 26, 2002 Susiecue, This is no chosen life, that's for sure. I'm so sorry that you're having so many areas of pain and suffering. From my interactions with this support group, I believe that we were all people who never really had to worry about illnesses because we were seldom sick. Now look at us...we have something we can't get rid of. I wish our doctors would agree to be on call for us 7 days a week, day or night. This stuff is just too unpredictable for us to be able to deal with. No one deserves this agony. Please hang on. Upping the pred seems to work and I pray it will provide you with enough relief to get through this. I've had RP for about 1 year and just got involved with this great support group. As a total group, this is a pretty powerful place to come to. Bad week WEll, I upped my pred another 5 mg today, now up to 40 & 40. Went up to 35 & 35 last Sat because of the eyelid & throat swelling. My left ear turned warm, red & sore yesterday, the left eye is bothering me (hope it's not iritis again) & the right ear is sore. The tip of my nose is also sore. My throat was swollen again this morning. My feet and ankles are also swollen. They haven't been this bad since I had toxemia when I was pregnant 22 years ago. Doesn't matter if I put them up, they're even swollen in the morning. I hate to play with the meds but I don't know what else to do. I go to the rheumy on Monday & hopefully will start the Imuran. This is getting old real fast. I have spent the week crying because I am so depressed. Have been referred to a neurologist about the dizzy spells & falling since my PCP says the RP sometimes attacks the brain. I had an echocardiogram in July which was fineI & an MRI of the brain per the ophthalmologist which showed some ischemic changes caused by my high blood pressure so that has been ruled out for the dizzy spells. I have only felt well for about 3 weeks in October & November. Resting doesn't seem to help. I have been so good about that since it helped in October. I don't know what to do. I am so frustrated & no one can help because they don't know that much about the RP. I don't know what I did to deserve this. I know it seems like all I do is complain when I go on the board, but I just need someone to talk to that understands. I'm not handling this very well. I don't lilke being sick. Has anyone else been sick for so long with this. I've been on 60 of pred since Thanksgiving, went to 70 last week & am now at 80. Thanks for your shoulders, SusiecueDISCLAIMER!!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 January 26, 2002 Report Share Posted January 26, 2002 hi susiecue, i think i can understant what's your feeling today. But don't be ashamed to cry. Al of us do it a day. Sometime the flare seems never ending.But beleive in your own power.3 YEARS AGO MY DAUGHTER Coralie was near to die (she was 11 years old) because of a non ending flare .She had vascularitis , and brain disease , and so and so. The drs was in bad spirit but she said no and i beleive in her power and after 4 months very critical she felt better and she is still alive.In spite of RP she has plans for the future.And i have plans for her . We can live with RP, we'll be the winner in spite of RP , in spite of bad drs. BELIEVE. (sorry for my poor english, but i want to give you hope, even from France) Marie-pia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2002 Report Share Posted January 26, 2002 In a message dated 1/26/02 12:01:37 PM Pacific Standard Time, katdavis@... writes: << I believe that we were all people who never really had to worry about illnesses because we were seldom sick. Now look at us...we have something we can't get rid of. I wish our >> , you are SO right there. I never went to a dr. Only to have my babies. LOL Wonder if that has anything to do with it? I was never sick til I hit 40 LOL. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2002 Report Share Posted January 26, 2002 In a message dated 1/26/02 10:50:14 AM Pacific Standard Time, linetech@... writes: << I don't lilke being sick. Has anyone else been sick for so long with this. >> Susiecue, Yes I think we have all felt like this and we can feel your frustration and pain. Just hang in there a little while longer, and hopefuly the pred will kick in. When I was on high doses of pred, my feet and ankles swelled just like you are describing. It seems like it will never end, but it really does get better. I think once you are on all the right meds (and that could take awhile to get right) you will see a big difference. I had to try metho, Imuran and now the Plaquenil seems to be working for me. We are all different and so it is a guessing game as to what will work for each of us. Just know that we are all here for you. You can whine and complain with the rest of us any ol' time. I'm sending lots of hugs your way. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2002 Report Share Posted January 26, 2002 Hi Susiecue! I have not been on the board much because I am hurting so much of the time and exhausted, so I feel like I will just be complaining, also. I'm glad you are posting what is going on, because it is really frustrating and even if I have support, it just doesn't seem like enough and I can't talk about this all the time to people in my life. This board helps. I'm sorry you are going through so much. I haven't been struggling as much or as long as you, but I too wonder if it will ever go away, or make a difference that I am on meds. Hang in there, keep posting, the good and the bad, and know that it matters. Quote Link to comment Share on other sites More sharing options...
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