Re: update - to

[Guest guest]

- I hear you loud and clear, and have been thinking the same thing over the past few days. My diagnosis was in Jan, and just when I thought things were getting under control, bam - I caught a cold the end of last week and it's been a downward spiral ever since. I had even upped my pred again the week before because of other symptoms. I'm not on Metho (yet- he says it's coming), but I'm on Dapsone and just increased that, too. On top of all that, I found out yesterday that results of a brain MRI came back abnormal and have to talk to my neurologist about them this week. I've had three previous brain mri's over the past 7 years and they've all been fine til now.

I'm getting a little spooked, it doesn't seem like things want to work for me very well either. So know you're not alone, it may just take us a little longer to settle in and find our best relief, like some of these other "old timers" (no offense guys!) Maybe we'll get lucky like a few of our friends and hit the jackpot of remission for any length of time, that's sounds pain-free to me!

I'm so glad you had a good time in Hawaii. We went 3 years ago, and I spent 3 days in bed with one of my killer headaches. That's when I knew I had problems I couldn't really ignore - who gets a headache in paradise?!

Let's compare notes and see how we do. Hopefully the metho will kick in better for you soon, I 'd like to know so I have some idea of what I might expect, even though chances are, I'll be completely different as so many of us are with this "cRaP".

Welcome back and stay in touch,

Carol G

update

Hello all!Hawaii was very nice, I love the island of Kauai! It's truly a beautiful island!I was disappointed, because I never got to feeling better, and I thought with all of that rest and no responsibilities, I would. That was a little discouraging, but it gave me information. It let me know that I'm not doing too much by working.My body has not given me one day of "no pain" since I got this condition in December. The pain is definitely a lower level than it was, probably due to the medications I'm on, and I'm very thankful for that. It makes me wonder if what I have is the "smoldering" kind of RP, or if everyone experiences a level of pain daily?Any insight or experience sharing would be appreciated. I know that the medication (metho) can take a long time to really kick in, but I'm on 17.5 a week, as well as 30 mg. of Prednisone a day, and I guess I am expecting more results.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

[Guest guest]

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Armed with information, there is nothing I can't handle, That's what I try to live by. So if the Drs can figure out what's going on and let me know the best ways to try to handle it, I can at least have the opportunity to be positive. My concern, as I expressed to the group last week, is sometimes it's hard to know the best road to take. I try to get as much information as I can cram into this head of mine, and then I can feel more confident in my decision. I also shared your sentiment about it feeling like it's taking a long time for things to settle down, but it took me over 4 years to get a diagnosis. My body believes in taking it's own sweet time whether I like it or not.

From my understanding, Dapsone is on the par with Bactrim, it's primary use was to treat Leprosy -go figure. It is supposed to block the lysosomal enzyme release to control the inflammation. I believe as far as the treatment scale goes, it is a step below Metho, which is a disease modifier/immunosuppressant. I've had some type of reaction to everything I've been on so far, ranging from mild to severe, so as I don't want to go through that again maybe, I'm feeling like what I'm doing now is reaching the end of it's useful life, if it had one. I still think the Pred is at the root of my problems, and my drs have pretty much agreed, but we also know that I can't do without it either.

I was about to hitch a ride to Mayo with Susiecue and Sharon, but the bus isn't leaving yet, so I'll wait too. But hearing 's success story and others like hers, it really makes you wonder if you can find that group of drs in your hometown that will do the trick. I know I haven't given mine a fair chance yet, so I'm really kidding, they have been fantastic, and I know they'll keep doing everything they can to help me. (The neuro that I'm seeing Thurs is the one that had never heard of RP-but he's willing to learn-YIKES!) I will keep my options open, and I hope you'll do the same.

Hope you have a good Wednesday, and I'll talk to you soon!

Carol

Re: update - to Carol G.

Hi Carol!Thanks for the encouragement and the sharing of your frustrations. Compared to many, we really are newbies in the world of taking on this condition, but it feels like it's been forever!I'm sorry to hear about your MRI, I hope that it's something that you and your doctor feel you can take on in a positive way. Hearing news like that seems like it would add a few points to my stress scale.... Hope you're handling it well.Hawaii really does seem like paradise, if you don't have to pay the costs to live there! It was a great break and I feel like it helped me emotionally, if not physically. That was good enough!Hang in there. I'm not sure what Dapsone is, is it like metho? I have done really well as far as not having many side effects from the metho or the Prednisone (except for increasing my body weight by about a 1/3 in three months!). I hope you're able to tolerate them well, also.Take care and I look forward to hearing from you!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