HELP ! back from GP regarding lumps
 

Went to gp.,he said lymph nodes they were also swollen under my arms., he advised lower the 20mg pred to 10mg and call neuro and let him know that gp said lymph nodes swelled and extreme swelling of arms and face., and since I was only on it 10 days., he says to only take the 10mg today and see how the neuro wants to taper it. Gave me a script for blood work., to see if any infection or what? Went for blood work., when I got home I called the Neuro like the GP said ( this is the neuro I don't like and am waiting to go to the other one., gp wants me to see the one I am waiting for and he is trying to get me in) told the staff at neuro exactly: Gp advised me to call you and let you know my lymph nodes are swollen up my arms and under arms and he was sending me for blood work., and lowered the prednisone to 10mg and wanted neuro to taper it the way he felt best as he prescribed it ...THE NEURO OFFICE CALLED BACK AND SAID., JUST QUIT TAKING IT YOU DON'T HAVE TO TAPER., AND THE NEURO WILL SEE YOU WEDNESDAY. I SAID NO TAPER????? SHE SAYS NO HE WILL SEE YOU WEDNESDAY. Needless to say I called my gp and advised his staff to tell him what the neuro said as I feel very awkward and scared to just quit taking it., and advised if she could please tell the gp what the neuro said........NOW WHAT., I think I just want to be with my gp till I can get into the neuro specialist on MG, this is just crazy., well I am now waiting to see what the GP says., but I know he felt it should be tapered.

Ack! You absolutely have to taper pred. I was on 10mg for all of three weeks and I still needed to taper off it over another two. While I'd go to the neuro appt on Wed, it sounds like your GP is managing your case better right now.

Good luck. I hope it is nothing too nasty going on.

Brian.

Nancy, I'm very glad you went in and got help! Good for you.

I love when doctors do that arrogant thing and say going off of a drug is no big deal. They obviously have never experienced what adrenal hypofunction feels like. I have, and it is NOT a fun experience.

Prednisone lowers your body's ability to fight infection. I hope someone will also recommend that you see an immunologist to make sure you don't have some deficiency of IgA, IgG, IgE, IgM, etc. that may predsipose you to getting infections more easily.

Ditto on what Brian said. You haven't been on Pred that long but since your body obviously reacts strongly to drugs and already has immune problems, you need to withdraw sort of slowly. I'm not a doctor but in the absence of intelligent doctor advice . . . :eek:

You have to go by how you feel when you go off of Pred. There are two issues:

1) How your MG is doing when you taper
2) If you are showing any signs of an adrenal crisis when you taper

This is where it gets tricky. Both can make you feel weak and tired. But the kind of fatigue you get from a low cortisol is overwhelming. It will make you feel like you can't stay awake. MG will make you tired but not usually THAT tired.

Here is a fairly simple article on low adrenal function/adrenal crisis. Now don't go getting worried that you'll have one, okay? You haven't been on Pred so long that it should be too bad for you. But everyone is different.

http://www.medicineonline.com/articl...al-Crisis.html

Another symptom they don't list is sweating, unusual sweating that doesn't stop.

And if you have an infection, it can make the adrenals even more unhappy. Yet another reason to taper Pred.

Do you have a blood pressure cuff? Can you periodically check your blood pressure? A drop in blood pressure can indicate a low cortisol level.

I can't in all good conscience recommend a way to taper, not being a doctor. You could try "halving" the Pred every five days. I think you should call you primary back and run a taper schedule by them first.

I absolutely hate when doctors don't give a patient direction. It's insane. And you need someone who will give you the most concrete and thorough information and instructions, given that all this is brand new to you. Even though you've had Pred before, you've never had it for MG before. It's a whole new thing.

Your primary should be able to look a Pred taper up and reasonably suggest a course of action. These doctors have access to info, like their Physician Desk Reference, that can help them figure things out!!!

Just hang in there, look for any new symptoms and try to relax. Resting more would be good, in case you get weaker. Definitely throw the stress out the damn window! ;)

Annie

Thanks Annie., I called my gp's office so I am hoping he calls back with a taper plan., I know when I was there today he felt I should be tapered off., he just wanted me to run it by the neuro as he prescribed it., so I called back the GP and told his staff what the neuro said ., so I am waiting for a call. I really don't know if I want to go see the neuro on wednesday for an appointment ., when then called to tell me no taper they said come in Wednesday., I just really am upset with this neuro and I do not feel like going back to him., but sticking with my gp till I see the neuro who specializes in august if not before.

GP called back....says definately taper........
 

GP called back and says HE DOES NOT WANT ME TO JUST QUIT..says take 10mg for 4 days and 5 mg for 4 days and then quit.

Thank Goodness for him.,,,,,,,So I do not think I am going back to this neuro...What do you think? My GP says if I ever go into a crisis or get worse he would send me to the hospital that he is on staff at and the Neuro I want to go to is on staff there also./

Please give opinions???

You really have to go with your gut instinct on whether or not to go back to the neuro. If you don't have confidence in his ability to care for you, then it's kind of hard to have him care for you! ;)

Sounds like your primary IS taking good care of you. There are some differing thoughts on this withdrawal stuff. Some say to even go as low as 2-1/2 mg. for 4 - 5 days and then to go every other day to taper. That's what my Dad's doc did. But, again, it's different for everyone. You have to go by how you are FEELING during the taper.

Again, any new symptoms - call your primary.

You should be fine! It sounds like you are in good hands.

Annie

So glad you have a great GP, hopefully a new Neuro? Hope they get this mess strait for you soon. Sounds like my past horror stories I went through. Scary !
Mary

HI Whirlwind!
 

I just am so anxious
 

I just started feeling better mentally about this whole thing then all of this starts ........... I will know I think some time today about blood work.,my dilema being should I go to the neuro? If I do ., I will have to tell him I am tapering off pred., and then if he wants to do other things., I won't want him too as I do not trust him.,,,,,,ugh...............I am just a wreck at this point.,, I keep telling myself., calm down., relax, but it doesn't work that way.
With all of you this has been bearable.,I don't know what I would have done if I hadn't found this message board and all of you caring people.
It has meant alot to me.
Thank you from the bottom of my heart.
Nancy

Sounds like you are safer with the GP, for now, until you can get a new Neuro. I learned the hard way, not paying attention to warning signs of a bad doctor, or one that could give a crap. They can really screw you up bad.
Go with what you feel is safe for you.
Mary

HI Whirlwind!
 

This is what I am going to do...
 

My GP called and said blood work is okay, white cells a little up ., but he knew that with me being on prednisone., he called me himself., which is nice he said he wants me to taper off, I told him I am and Amanda his nurse gave me the taper yesterday., he said good., I told him that the Bad Neuro wanted me to come see him tomorrow and I asked him if it would be alright if he just took care of me till I can get into the new good neuro., as what is the sense on me going back to the bad neuro that I have not trust in., and have him want to start me on other meds etc., ...he said fine he would take care of me till I get in with the new good neuro and he is also trying to get me in there as soon as possible...I called the bad neuros office and just cancelled the appt., for tomorrow. I said nothing else.I have an appt with the good neuro for end of August., and they are to call me with any cancellations, in the interim the gp says if I have a major issue., he would send me to the hospital the GP and the Good neuro is at., and they would take care of me.

Sounds like you have a great GP and are in good hands.

Best of luck with this.

Cheers,

Brian

I think you have made a good choice whirlwind, your absolutely right.
Mary

SCARY! I am glad you GP helped you. It is scary when we have to be our own docs! I am just trying to learn my "body" so that I can realize when I am getting tired...I go and go...until I crash...gotta learn to slow down BEFORE I crash.

Its so good that you have a GREAT gp, they are worth thier weight in gold I think.
Hope you get a "cancellation" appointment with your new neuro soon!!

Hi Cricket,

I use to be like you and go til I crashed:rolleyes:. I now plan what I have to do, as I know how much I can do before crashing, although it still doesn't stop me from getting frustrated and overdoing it. If I'm not well I have to think of that to, because it means I can do less.

take care and take it easy:D
Kate