Discouraged and Worried | Arthritis Information

The RD had put me on 30 mg. of prednisone, to be stepped down every five days. I'm on my second day at 25 mg. and was considering calling to get instructions on stepping down more quickly because it just didn't seem to help much, if at all. But today my whole left side is feeling really uncomfortable again, so maybe it helped a little at the 30 mg., but not enough to make taking that high a dose worthwhile. Since this is not a success, I'm not sure what the RD will do. He doesn't want to put me on Enbrel, Humira, etc. at this stage of the disease, yet the MTX and Plaq. aren't doing enough. I'm going to talk to him about minocin or other options, but right now I'm getting worried because last time he said something about maybe having to "just live with it." That's not an option because I'm slowly losing strength, feeling and mobility on my left side and it's moving to the right. The ringing in my ears also continues and that's a concern as well. I can deal with it at this point, but if it gets louder, I'm in trouble. I'm badly hearing impaired already.

Prednisone is powerful stuff. If that doesn't work, isn't that a bad sign? If prednisone failed you, did you eventually find something else that worked?

What about adding sulfasalazine to the mtx and plaquenil?Yes, Pred failed me and I found Minocin. I think most other people do well on Pred - but it doesn't mean other meds won't work for you. Like everybody says here - its a combination of some kind that will eventually work.

Jesse - if you're considering Minocin, it's been linked to hearing loss AND recent research is showing it's neuroprtotective. One study I sent you say's it protects the hair folicles in autoimmune hearing loss. I sent you and my friend the info and my friend is seriously considering this as an option to treat her hearing loss. Minocin works oddly, with getting worse before you get better. We call it a herx or Jarische-Herxheimer reaction. This could scare you to death. So you have to know what you're doing and what could and could not happen. My thoughts are...you have a darn good chance of getting your hearing back with enough time on the med...but I'm not a doctor and you have to do some research yourself.

Please actually pull your charts and get them sent to you. Look at the notes and the information - research what they are saying happened to you. If it was the folicles...you have a shot. If it was those tiny bones in the ear...nothing in the studies say anything can help with that.

Does anybody know what those little bones are made of? Bone or cartilage?

Hugs and NEVER give up!

Pip

Jesse88,

Why doesn't your RD want you to start on a biologic right now?

Kelstev, I'm allergic to sulfa drugs and tetracyclene so I guess that's why he didn't try the sulfasalazine. Thank you for offering a suggestion.

Pip, I'm waiting for a copy of the ENT doc and neurologist's reports to be sent to me. They're supposed to come with my most recent blood work, which I always request a copy of. I long ago gave up getting my deaf ear healed, after seeing several specialists over the years. At your suggestion a few months back I even tried to find the doctor who treated me those many years ago when I first lost the hearing. He is gone, nowhere to be found. I believe he retired since he was an older gentleman. I'm anxious to see exactly what the new ENT had to say in his report, but if it's anything like the reports I recently got from the neurologists and neurosurgeons I saw over the past five years, they will tell me nothing. I was amazed at how vague those reports were. I think it's because they know the reports can be read by the patient so they're VERY careful about what they'll say or commit themselves to, which, apprently, is nothing. I am going to research minocin and talk about it with the RD. Maybe if I have more information at hand, he'll be more receptive and take me more seriously. Thanks for your help, Pip.

Kweeb, since my disease is undifferentiated, it's considered less serious than full blown RA, lupus, etc. The goal is to stop it from getting any worse. At this point he thinks the possible side effects are not worth the benefit I'd get from the stronger meds. But if these symptoms continue to get worse, I'm going to have to disagree with him. I really don't want to get that next step either, which is another reason the minocin is starting to look better and better.

Snowowl, thanks for your post. I didn't realize pred. itself could be the cause of this depression I'm feeling today. I was feeling really happy and encouraged after reading JSNM's success story this morning, but then I started feeling very blue...not like me at all. So maybe it's the pred. I don't know. I still haven't called to ask about stepping down faster. I'm really confused right now, I don't know what to do. BTW, your line about hitting your liver with a baseball bat made me smile....so descriptive. I'm sure I'm not the only one who wonders, why am I taking this nasty stuff if it's not doing the job? I know it's helping some, I found that out when I tried to halve the Plaq. dose, but is it helping enough to justify the possible side effects?

I think I'd better stop now. I could bring down the whole board with my sadness today and that doesn't serve any good purpose. This will pass.

Jesse, I just don't think "live with it" is good advice. While you're busy doing that, your disease is busy permanantly damaging your joints. Is a second opinion an option? I'd say that if you are opposed to enbrel or the other biologics, do try AP. Living with it isn't good enough.Pip, I just started reading about minocin and it seems to be related to tetracycline, which I'm allergic to. That may not be an option for me, but I'll ask about it anyway. Jesse - I keep seeing something called penicillimaide (sp) as a DMARDS - its been around a long time. Is that a possibility? And you could never pull a board down, this is the place for you to post and get feedback and learn. I stumbled into AP on this board, had never even heard of it. Take care ~~ Cathy Hi Jesse,

I am sorry your doctor said such a discouraging thing to you. I know what you mean about them not wanting to pull out all the stops to treat you because you don't have a specific dx. It took a long time to find drs who would treat me and even now they hesitate.

No, you do not have to be satisfied with "learn to live with it". It made me so mad to see that a dr would tell you that. Would that dr be content to learn to live with a progressive illness not even knowing what it is and what will ultimately happen as a result? Not until you have tried and tried and there is nothing left to try. Especially since it is getting worse you need to keep pushing and maybe see another dr. I am getting worse too, and it takes more and more prednisone to keep it under control - I thought it was interesting that you are finding the same thing. I am losing control of both feet now. I can walk but not normally and it seems to be speeding up.

so I am going to push for more aggressive treatment at my next appt (in 2 weeks). Maybe we can cheer each other on.

btw - the prednisone can greatly alter your mood. I am very moody on it, and tend to get very grouchy and down when reducing the dose. Another reason why I am worried that my dose keeps increasing. If you need to stay on it you might ask about anti-depressants. I am taking nortrptiline for the nerve pain and it is also an anti-depressant so it kills two birds with one stone.

Keep up posted on how you are doing and take care.

Laker

Linncn, thanks for your response. I also believe damage will continue if he just gives up. Yes, maybe I should see another RD. The problem is, I had to get special permission to see this one, since there is no RD within 50 miles who is in my plan. This doctor is highly respected in the state and president of one of the arthritis organizations. I guess I'll wait to see what he says when I see him in a couple of weeks. If I'm not happy, I will most definitely move on.

Penicillimaide? Thanks, JSNM, I never heard of that. Sounds like it's related to penicillin, which I can take.

Laker, we seem to be going down the same path. Yesterday I was bringing my grand-daughter home and for the first time was nervous about driving because my feet felt numb and weak. I find that vigorous excercise helps that, but I know it's just a stop-gap measure. Quote: btw - the prednisone can greatly alter your mood. I am very moody on it, and tend to get very grouchy and down when reducing the dose. That's exactly what happened yesterday. I haven't felt so bad emotionally in a long time. Today is a bit better, and knowing what's causing it is a big help. Today is the day I call the RD about dropping the dose more quickly.

Laker, I will happily cheer you on and anyone else who needs a boost. The value of being able to discuss these things with people who are truly in the loop is beyond value. I know it's helped me before and I truly appreciate the time and effort taken to answer my various questions and concerns. You're the best.