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my first appointment with me rheumatologist he ordering more blood work i go first thing in the am then i start 40mg of predisone untill i go back in two weeks he said it could be two to three year before this is over he seen to be asking a lot of question about the headaches and my jaw pain? i'm going to try to work with the new dose but he said i might not be able to work buy we will cross that on my next appointment he started me on some pain pills i hope they start working soon will tahat 's wat happen at my first visit

hope everyone feeling better all we can do is keep smiling

Good visit with some action taken.

I hope you don't need the pain pills with the raise in prednisone.

I have Vicoden on hand and it works but does not take down the reason for the pain as does Prednisone.

Let's hope it's not two to three years in duration. It's not for everybody.

In fact I wonder how long everybody here has dealt with it?

I'm only into it for about 5-6 mo's altogether I think.

Best Wishes,
KewaneeKewanee,

I dealt with it for almost 5 years. [QUOTE=knitwit] Kewanee,I dealt with it for almost 5 years.Reni
[/QUOTE]

What?!!! Unbelievable! And you have to go through this some more? That's it. This is surely an autoimmune disease like lupus or any of the others that flare and remmis. Why else would it come and go away just to return.

Oh I'm sooo sorry this is happening to you.

So help me I'm going to find a better way than prednisone.

Oh my goodness. Wish I could make it go away for you too.

~Kewaneekewanee,
 
I also have been dealing with this for five years, it has been a long hard struggle and like i said in other posts, i do not think this is going to go away,
mine seems to be getting worse, or maybe because now i am dealing with old age.  I am 69, and feel like i  am 80.  I hope things get better.   Georgiana

thank you all

can many tell me if the bad headaches are from the prednisone or from the pmr worst day then ever nevoys as well

thanks

viocki

Oooh noooo.
Bad headaches you call the Doc. about. It's one of the things they ask about with PMR to see if GCA could be lurking.

I don't have that but my jaw is getting so I cannot use it.

The PA at the Doc's office said if you get real sharp pain at the temple....and I know there is more to it than that. It's another sign to pay attention to.

Be careful of headaches with no expanation as it may be a sign.

Goodness more folks with this for five or more years.

Where are the Doctors on this? They always say one or maybe two years!

Oh me.

I just called the pharmacy and found out I can take Trilisate (a buffered salicylate) with Pred. and I'm going to see what happend if I wean off of this.

~Kewanee [QUOTE=Georgiana] kewanee,  I also have been dealing with this for five years, it has been a long hard struggle and like i said in other posts, i do not think this is going to go away,mine seems to be getting worse, or maybe because now i am dealing with old age.  I am 69, and feel like i  am 80.  I hope things get better.   Georgiana
[/QUOTE]

Georgiana,
The Docs are not telling it like it is and some of the informative online sites are not either. They make you think it's much shorter time like a couple of years.

Think I'm getting upset here.    

Let's hope something comes up soon that will work besides prednisone.

They'll be able to roll me everywhere I want to go soon.

~KewaneeKewanee39203.6183564815Kewanee,

I'm pretty sure I'm over the PMR now, although lately I have beeen aching pretty bad - mostly my back and hips, and I think (?) that is probably due to my back problems. Oh, well. My rheumy's nurse told me at one time that they have one patient who has had PMR for 10 years. I did NOT want to hear that. And I forget who it is on this forum who said the PMR came back, tho' with less severe symptoms. I have an appointment the 15th of this month and will see what my rheumy says about my latest aches and pains. I don't want to go back on prednisone as I gained 36 pounds in less than a year on it and am still trying to lose it (but not trying hard enough Reni,
I'm depressed with this and thought maybe it was the prednisone doing it. It does affect the mind after all and makes you tired.

My Doc's PA said it causes fatigue. Yet, it can wire you I hear other times and keep you awake?

So confusing.

I hope you don't have the PMR back and yes that is something you don't want to hear, 10 years. I don't like to hear five years.

~KewaneeKewanee,
I had no problems, other than the weight gain on prednisone, and actually slept better and was so much more energetic because I didn't have the pain while on it. The best way I can describe it is having a freedom of movement that I hadn't had for so long (and don't now again) and feeling normal. It was wonderful. I wouldn't let the 5 and 10 year thing upset me; everyone is different, and I'm sure the 2-3 year length holds true for many sufferers.

I have read several sites on-line that lump PMR in with all the other autoimmune diseases.

Reni

Vicki-

Glad you are with a rheumatologist and that they are giving you prednisone- hopefully only short term use. I've been on it for 1 1/2 years now and am trying to taper off. Very difficult to do after so long.

I have been plagued with severe headaches in jaw/temple area as well. They have not done a biopsy to see if it is Giant Cell Arteritis. But that is a danger for those of us with PMR. It can affect one's vision. My rheumy tells me to carry prednisone 60 mg with me at all times and if I have sudden vision changes to take 60 mg and call him immediately. They really don't know what causes the headaches- they don't think it is the prednisone causing them and prednisone certainly hasn't helped mine- it will be interesting to see what they do as I go down on the prednisone.

The only thing that has helped me is tylenol with codeine when they get bad.

I'm down to 8 1/2 mg/day and want to sleep all the time . Has anyone else had that problem with tapering?

My rheumy says exercise is important. Walking, stretching and mild weight lifting. Really hard to do some days.

I've been diagnosed for 1 1/2 years now and I am definitely not improved- BUT- I'm hopeful and try to take each day as a new day and enjoy what I've been blessed with.  It is very hard to always stay positive- I am not always.

I was really helped by the book: FULL CATASTROPHE LIVING, by Jon Cabot-Zinn.

Hang in there all!

Karen

Karen

Karen,

Sounds like you've got a good rheumatologist. I always wondered what in the heck people with PMR are supposed to do if they have symptoms of GCA in the middle of the night or when they're away on vacation or something. That sounds like a good idea to have 60 mg prednisone on hand, just in case.

Reni

Vicki:

I was diagnosed with PMR 14 months ago and been on prednisone for that length of time.  I am now down to 5 mg per day and the pain is managable everywhere except in left shoulder and arm that makes sleeping difficult.  It is hard to find a place that you don't lay on some or all of your shoulder during sleep.  I have had 3 relapses going down on prednisone dosages, and have had 2 rounds of steriod injections into both shoulders.  My rheumatologist has suggested I start taking Enbrel to help get off the prednisone.  I am not sure I will since I am feeling better, but if I have another relapse I will start the Enbrel.  I am optimistic that this will not last much longer!!  I pray the same for all of you.

Marla

Marla,
This is new thinking....Enbrel for PMR? Well you must keep us educated here if you go on that.

I've got to put up a new thread.

I just went to WalMart and had all I could do to walk.

I have had some dystonia and at night cramping that goes up between my ankles and knees mostly, so wondering what this is do to.

Carry 60mg. Oh that is an idea. hmmmm.
I have to run that by my Doctor.

Isn't it good to be able to swap idea's, experiences and questions here?

Hope you all have a good day.

~KewaneeI will keep you posted when and if I start the Enbrel.  Thanks
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