The RD got me a quicker appointment than the usual three month wait for new patients and I was grateful for that. The RD told him to rule out MS (again!) before he goes ahead with any more treatment, based on my symptoms. Fortunately, the neuro says no MS because of no new symptoms, just more of the same. He agrees with the RD and ENT doc that the ringing in my good ear and worsening of the ringing in my deaf hear is being caused by the disease and may be autoimmune inner ear disease. That plus the fact that I'm not feeling as well as before makes him believe the disease is not under control. So I guess I can expect to be going up that good old meds ladder next time I see the RD next month. I guess I can't complain, I don't want to go completely deaf and I'm praying the drugs will keep this AI disease controlled enough so that I won't lose all my hearing. I've already lost some in my good ear but I'm not quite ready for a hearing aid (although the audiologist disagrees).
I told him that even when I was feeling much better from the drugs, I still had numbness, tingling, burning problems and that the RD said it's because it takes a long time for nerves to heal. The neuro said because the disease is not under control, those nerves will not heal. I thought this might be of interest since there are many of you who have nerve issues too.
Question: Is it common to get only a few months improvement before the drugs stop working as well as before? I felt a little embarrassed telling the RD I was doing so well and then just a short time later having to tell him the problems are coming back, plus the ear thing.
Anyway, I'm trying not to dwell on this and will just hope for the best. I guess if this had happened many years ago I'd just have to accept deafness and be done with it. It could be worse, right?
Hi Jesse88
So sorry to hear how unwell you have been. About your question. I do believe that sometimes medications work for a while and for some reason your body becomes immune to them or absorbs them too quickly, I don't know the ins and outs but that has happened to me before and I have had a wow! I've found it and then been really disappointed. Try not to beat yourself up too much, of course you would be worried about losing your hearing. I only hope they will be able to stop it soon for you! Take care of yourself
Thanks Kandy. I've read here many times of others who go up the meds ladder when their medications no longer worked, but I was wondering if it's unusual that the "relief" time was so short. I would think they would work at least six months or more before the body started fighting it, or whatever happens to make the drugs stop working. I've never read how long it usually takes when some here have had to up their meds, and I'm curious. Hi Jesse, am so sorry to hear about the complications. I've been on the med roller coaster, and yes, it's not uncommon to have dmards and biologics work for only a short time. I've been through all of them except for Orenicia and one other and now I'm going down the ladder. Humira has worked for the last month and my RA markers are normal for the first time in 10 years. I anticipate it to work longer than the others and hopefully I won't be disappointed. It sounds like you're tired of the disappointment also. I've actually been able to decrease MTX by 2.5 mg. and only on Humira every other week. Good luck and I really hope that your hearing loss stabilizes. LindyTrying this again. lol
I am sorry to hear you still are not up to par Jesse. I hope that they get the hearing figured out for you.
Thanks for the info on nerves. I am glad to hear you do not have MS as well. Keep hanging in there.
Jesse,
I am really sorry to hear you are not doing well. It is so frustrating, I know. 6 months ago at my last appt. we all thought I was doing great and now I have to admit that this is not under control. Sometimes I wonder if I can even subjectively evaluate if things are under control. But I know I should not be tripping on the floor because my foot doesn't work right anymore. Thank you for posting the info about the nerves-that is my main worry and since mine are getting worse, clearly we need to try something else. I know a lot of the damage is irreversible already. You are right to be concerned about you're hearing. It's too important to mess around with.
I feel for you. Everyone always thought I had either lupus or MS earlier and then would say "no you don't" - also very frustrating. Be totally honest with your dr. - if the meds only worked a short time they need to know it and they need to know everything that is going on and that you are concerned about so they can decide what is best to do for you. It is not your fault that it did not work and you're concerns are valid.
Hang in there and keep us posted.
Laker
LinB, thanks for your response. It's good to know I'm not just an uncooperative freak case who can't get a long lasting improvement. I'm so glad your markers are normal. You must be thrilled!! It would be wonderful if it lasts a long time. This could be your Magic Bullet.
Shykymom, thanks for your post. It really does help to "talk" to others who "get it."
[QUOTE=Laker]
6 months ago at my last appt. we all thought I was doing great and now I have to admit that this is not under control. Sometimes I wonder if I can even subjectively evaluate if things are under control.
[/QUOTE]
Hi Laker. Your quote above is so on the mark. I feel like I don't even know my body anymore and can't trust what it's telling me from day to day. I have to admit, it never occurred to me that my hearing might be threatened but apparently when the AI disease is affecting the blood vessels, the entire body is up for grabs, so to speak. I'm feeling a bit more optimistic today, like if I get this under control meds-wise, my good ear will be saved. I feel the same for you with all of your similar AI issues. I really regret having to increase the meds, as I'm sure you do too, but I'm really hopeful they will do the job. It's so scary to think of myself as possibly becoming totally deaf, but others face possible futures equally scary, if different, and they deal with it. So will I. My husband, bless his heart, will love me even if I'm a deaf chick who drags her foot or ends up in a wheelchair, but part of me believes it will never get that far. I have to or I'll start crying and what good does that do?
Jesse and Laker - I can relate. I have given up on this poison treatment and going natural, and if I die faster, well, what difference does it make? I feel great on the antibiotic minocin and that's all I ever wanted, to stop feeling so sick and tired and lose the brain fog and the confusion. Good luck CathyHi Cathy. I read with interest the different posts on the antibiotic therapy and am keeping it in the back of my mind for the future. Since I've just started this meds journey, I'll give it a while to see how far it can take me. I've read minocin is related to tetracyclene and since I'm allergic to that, it may not be an option, but something else along the AP lines may be.
It's great that it's working for you and that you're satisified with the results. My sincere hope is that you continue to do well with your therapy. Thanks for your response.