What's next? Need advice | Arthritis Information

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I go back to my rheum and neurologist on Monday. I am maxed out on the drugs that we hoped would help and really the only thing that is sort of keeping this back is the prednisone. I was doing great 6 months ago at my last appointment but have really deteriorated in the last 3 months with new problems that are probably from the vasculitis. I know the drs will take their cue from me and I don't know if I should push for more toxic meds, go off the meds to get a more specific dx or just maintain the status quo and resign myself to getting worse and worse. I am in my mid-forties so I have a lot of years I have to live with this. Any thoughts?HI Laker, sorry to hear you are not improving.  I think you have answered your own question, if you are deteriorating and having new probs then your current regime is not enough for you.  I would definitely query new meds or an additional one.  Never resign yourself to getting worse, keep up the fight, we may have this dreaded disease but punch its lights out by not giving in to it.  Haven't seen you around for a while, hope everything else is ok, (((Janie))))  Have you talked about Humira, MTX, Enbrel, etc etc etc??

 
I can't remember if you're one of the ones who can't take those or not....sorry........

Hi again Laker,

Still fighting the good fight are you? Keep in mind that it took over a year for the professionals to get my RA under control. Keep in mind that many people have taken higher doses of prednisone for years and are still in good shape. Prednisone does have bad side effects (possible) but has kept so very many people alive for a very long time with acceptable side effects especially tose with vasculitis. Now newer drugs are working to curb the effects of vasculitis. I truly believe that the medical professionals will get your system under control and my advise is to trust them. I know how hard this time is for you. I remeber the days when there was absolutely no light at the end of the tunnel. Hang in there Laker, I know that someday soon we will hear good news from you. Do not be so afraid of prednisone, vasculitis is much more dangerous than is prednisone. You have already read all of this but here's the link anyway.

https://health.live.com/article.aspx?id=articles%2fmc%2fpages%2f1%2fDS00513.html&qu=Vasculitis
LEV

Much HugsThank you all very much. You are right that I already know the answer to the question, I am just afraid of it. It would be much easier to just maintain the status quo, but I know that won/t work either since I am losing the battle. LevLarry, the article reminded me how important it is to get this under control.

Thanks,
Laker
I vote for doing what will help you feel better.  I'd disucss a change in drugs.I'm with kweenb. Hope you get to feeling better.

Hi Laker, google vasculitis+Lyme. Lyme borreliosis can cause any symptom and any disease. You would make me feel better if you ruled out Lyme as an underlying cause of your problems.....worth a shot.

Ron
Don't ever just resign yourself to getting worse and worse.
 
RA is unpredictable. Just because you are having a rough year doesn't mean next year will be as bad. OR vise versa.
 
I'm doing great right now but I've been around this block before and have learned from experience that next week, next month or next year I might not be as lucky. I have learned though to be thankful for the good days I have and I've also learned not to be so disappointed by the bad days because there are brighter days ahead.
Gosh, Laker I was sorry to see this post.  So many of us know exactly how you feel, trying to avoid the stronger drugs, wondering if you can get away with the status quo.  In your case I think you need to be aggressive and take whatever the next step is.  I hope your doctor takes cues from you only to the extent that he considers your feelings about the matter.  He still has to be the one to take the lead and advise you what, in his expert opinion, he believes is best in your situation.  The vasculitis is the thing you really need to pay attention to, but I'm sure you know that.  My RD takes vasculitis very, very seriously and I want you to too, please.  Do whatever it takes to get that under control.   Hugs to you.  Well Laker,
 
Glad that you realize what a dangerous form of arthritis you have and the importance of controlling it. Trust your Doctors, they will take good care of you. I let mine know that I expect them to keep me alive and active, they do that and I'm appreciative and let them know every time I see them. Keep the faith and don't worry about bad things happening, we really have no control do we? Enjoy every single minute that you can, this is such a wonderful amusement park, isn't it?
 
LEV
You guys are all really great! I feel so much better about this now. Thank so much for all the concern and support.
Laker

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