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need advice neurological issues and wanting to avoid more pred

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Posted 3/4/2010 3:38 AM (GMT 0)
I see the rheumy on Monday so I have some time to make decisions about what I want to do between now and then. The thing is I am almost back down to 20mg prednisone, just a few more days at 25mg but the neurological symptoms are slowly returning- I have a near constant headache and my muscles are doing funny things to make it even worse. My muscles are spasming so hard that I can see it happening under the skin and it makes body parts jerk. I also have noticed I am having problems typing and reading again- not really bad but bad enough. The thing is I really do not want to be on more prednisone. So I was wondering if anyone had any ideas about other options. You can see from my medication list what I am already on. I also seem to be having some kind of arthritis related flare as well because of the pain in my knees. I just want to deal with this and move on, it has already cost me a semester of classes and I thought we had gotten it under control. I just hate the idea of so much prednisone.
Posted 3/4/2010 5:18 AM (GMT 0)
Hi hun, I wish I was there to give you are hug. I sad can hear how sad you are in your post. I think most of us know the steroid dance we do. This disease is so cruel. Either you take the pred. or you get so sick that you have to take even more of it. I can't suggest anything different. I can tell you that I have some meds that make my muscles jump like crazy. I always thought it was from when I take the percocet. (pain pill). I know you get tired of fighting it. I know you want to have a normal life but I guess the best we can do for now is except this as the new normal. I don't want to give you false hope but my muscles and joints had me in tears tonight but i think it has to do with the changing of the weather more then anything else.

Have you discussed this with your rhummy? I was just curious as to why you think he would just put you back on higher doses of pred. I would think if there was something else you could try and you are adiment about it that your doctor would try to go by your wishes to a point. if they don't you need someone else that you can at least talk to. In the end steroids may be the best thing for you but there are other things out there.

hopefully someone here will have some suggestions.

hang in there

God Bless

carol

Posted 3/4/2010 6:21 AM (GMT 0)
This is only my second visit with this rheumy so I have no idea how he will react when I ask him to avoid increasing my prednisone. He upped it over the phone from 20 to 40 for a week when I first told him about the increase in neuro symptoms. I just hate how 40mg makes me feel and how hungry I get on it. I am still on 25mg until Monday when I go back to 20mg but I have no idea what he will do with my meds Monday. I know pred works and is first choice in many things but would rather try something else. I don't want to mess around though when neurological involvement is so serious. I don't know what to do or what to suggest other than pred though which makes it harder. My old rheumy tried a low dose of cell cept for 3 months with no results when this happened over a year and a half ago.
Posted 3/4/2010 6:51 AM (GMT 0)
Neurontin and Lortab together work best for me. I just responded to your msg on the pool exercise topic. All the best!
Posted 3/4/2010 11:16 AM (GMT 0)
Oh hun, I am so sorry! I do agree with Carol!!! If you don't take it now, you will probably end up with a massive dose of it. Maybe even IV. I complelty understand about not wanting to take prednisone. I have pretty much been on 60 mg for almost a year. It comes down for a month or two but have to go right back up. You might have to take a higher dose until another med has had time to get into your system.

Have you tried Cellcept? I know several people who recommend it and say the drug helped them so much. When do you see your rhuemy again?
Posted 3/5/2010 9:24 PM (GMT 0)
I see the rheumy Monday and had hoped to walk in with a list of options instead of just questions. Now I have to buckle down and do my question list. Sad when I have trouble remembering what I need to ask when I am making my question list.
Posted 3/6/2010 12:56 AM (GMT 0)
I just wanted to say cellcept has help several people. I did end up on massive prednisone for mine but it was really severe brain inflammation. Be careful it can get out of hand quickly. God bless you, Judy
Posted 3/7/2010 10:17 PM (GMT 0)

Hi!

I know how you feel about prednisone. Been there, doing that. Up to 40 mgs. for near hospitalization for cp and sob. Living on duonebs every 3 hrs with a cracked rib from coughing. I asked my rheumy that very question in Oct. Option instead of pred. He shook his head and said for now, prednisone is what I need. I have had to accept that it is a quality of life issue. I have been taking the pred. so I could work. I love my job and I can't do it anymore. I am applying for disability. And praying that when I can rest more without job stress, that my body will recover abit, and I won't need it so often. By the time I got to the emergency room, (my first, and boy was it scarey), my family dr. gave me 20 of prednisone and admonished me for not taking more, sooner.

hugs,

suetoo

Posted 3/9/2010 2:05 PM (GMT 0)
Well, the new rheumy said he doesn't want me on high doses of prednisone for long periods of time which is great in my book. Instead he increased my Imuran and asked me to try taking the enbrel every other week because in some patients it can make lupus worse even though it helps their RA symptoms. I agreed to try it and see how I do, he said that the increased Imuran may help protect me from any increase in symptoms this might cause. I have no idea but obviously we have to do something. He even filled out the paperwork so I can drop my classes and gave it back to me in the same visit. Well, I didn't sleep well so I will write more later.
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