Wednesday morning I faxed him a letter chronicling the last 6 weeks describing how I have been feeling and what I have tried to do to feel better while I have been in this flare.
I reminded him of our discussion at the last appointment when I was just feeling less than good and he said we could try going up to 20 mgs of MTX but since I had to go off to go back to the 15 mgs initially and call him after 2 weeks. At that time I told the receptionist I was flaring and she came back and said he says stay on 15 and you can discuss it again at your next appointment. Then they rescheduled it because he wouldn't be in that day and now it is still 3 weeks away.
I don't feel good! I feel like I'm getting worse. Or maybe I'm just tired out of feeling like this- I don't know.
I wrote in my letter that I belong to a support group and people have talked about a medrol dose pack that gets them through their flares. I asked for any suggestions he could make.
I called yesterday to see if the letter was received. Yes the receptionist said. It's on his desk but I don't know what he decided yet.
Today I called and they are closed until Monday.
It's even getting to the point where my joints are sticking sometimes when I make a fist and some times I'm having like hot burning sensations from my elbows down through my hands in the AM.
I have plenty of prednisone because I'm still on 2 mgs a day but I don't dare increase it with out his OK.
Do you think he got mad because I'm questioning him wanting me to wait it out until my next appointment?
oh honey.. I am so sorry he didn't respond before the weekend.
That burning sensation was not pleasant and I remember it very well... take it easy (as if you have a choice)
who knows what he thought or if it angered him..... some doctors and some specialty doctors have a god complex!
WTB,
Could it be that since your information was in a letter that he couldn't fully "understand" the seriousness of your situation?
My RD lets me keep prednisone on hand to take when I flare. He told me ahead of time how much I should take. The only thing he asked was that I call to tell them I'm taking it - just so he's aware. It's really been a life-saver at times.
Does your RD have an emergency number where you can speak directly to him? If you are really hurting, you could always make a trip to the ER.
I am really sorry you aren't feeling well.
Thanks Babs and Kweenb!
kweenb- although I am not feeling good at all it's not ER bad. I think I have a knack for sugar coating how I feel when I talk to (write) my doctor too. I did say it was nothing like my onset pain- which it isn't. That was soooooo bad that anything else pales in comparasion. Yet I know it is not normal to feel like this and it is getting very tiresome and seems to be increasing as the weeks go by instead of getting better. I figured the more doses of MTX I got back in my system the better I should be feeling.
This is my first flare so we don't have any type of plan in place.
I'm sure I'll make it through the weekend OK but I'm disappointed in him that he didn't call.
Three more weeks is definitely too long to wait! Someone should be able to call you before the weekend is out so you don't suffer unnecessarily, otherwise I think you should call an after hours number or even your family doc. I had the same thing last Friday - I was supposed to taper from 10 to 5 mg on Saturday but just before 5:00 Friday my doc called back to say I could stay at the higher dose til we could talk more the following week. Sounds like you need a little increase.
I'm of the opinion that your RD should be invested in keeping you pain-free and high functioning. Hope you find some relief!
[QUOTE=wanttobeRAfree]Do you think he got mad because I'm questioning him wanting me to wait it out until my next appointment?[/QUOTE]
Hi wanttobeRAfree. You have asked a VERY tough question, and I am not sure that anyone aside from your RD can answer it.
I certainly understand your frustration and empathize with your unremitting levels of pain as well as your feelings of being tired of all of this. Nothing about this insidious autoimmune dysfunction is ever
easy.
I would suggest that you try (knowing how futile that can be!) to change your appointment to the soonest possible date as an emergency.
2 mg of corticosteroid is, at least in my experience, a gumball as far as any type of relief goes. Have you considered a visit to your local urgent care facility?
My RD is more than three hours driving time from my residence and I have utilized urgent care more on occasion when travel was out of the question and/or my level of
discomfort reached the 8 point on the 10 point scale.
My very best wishes for a tolerable weekend.
Wantobe-Screw him! It's his job! You call an after hours number and get relief! That's an order.
[QUOTE=TheLa]Wantobe-Screw him! It's his job! You call an after hours number and get relief! That's an order.[/QUOTE]
I agree with TheLa!
I am sorry you had to join the bad rheumy club, its no fun. Hang in there, and a trip to urgent care with letter in hand might be helpful.
I honestly am starting to think they just are frozen in fear - no idea what to do.
Wanttobe:
Oh my gosh, I am so sorry you are going through this.
It is just my opinion that doctors don't have the right to get angry at us for feelling like crap. It isn't there right. We go threw alot of pain and illness. Maybe he is thinking about it. Who knows? My RD is a moody one. He usually does the right thing. It just sometimes takes him a few days longer than i would like.
I am sorry, wannabe. I hope you find some relief soon.
Much and many hugs to you.
Hope you get through the weekend with as little pain as possible. Call the STINKER first thing Monday. Tell them you are in pain and need help now.
Take care,
Tink
All I can say is I can totally relate....but you know that don't you?
Sorry you're feeling bad, hope it passes soon.
Bob
Thanks again for the support.
I will definitely be calling his office on Monday. I can persevere over the weekend. However- when you take off your winter gloves should you feel pain from your hands to your elbows? Should your shoulders hurt when you raise your arm half way? Should you struggle and feel pain taking a shirt off over your head? Should your hands and wrists hurt to the touch? Should you be capable to open a dishwasher detergent bottle, child proof med cap, water bottle, tooth paste cap etc? I can't.
The more I think about it the angrier I get. Not that I have to deal with the pain and inconvenience but it just dawned on me (duh...) there must be damage happening inside as well!
I think it takes a little while for major damage to occur but I totally agree with you about not wanting any more of it. I've been pretty fortunate in that all the RA has totally taken out are my hips. They were replaced in sept 2005 and jan 2006. My left ankle is pretty much trashed now and my right wrist is kind of bad but I can live with it. The only thing that's really stiff and starting to worry me is my neck.
The squeaky wheel gets the grease. Well in our cases it might be the creaky patient gets the grease. Either way bother them until you get some action.
BobLOL- I know I won't wake up tomorrow with twisted fingers but I think my RA is active and it has been for 6 weeks so subtle changes could be happening inside.
oil can- oil can!
I'm glad you're going to take care of this monday, but I still wish you had called your doctor's after hours number. That's why doctor's make the big bucks. There's no reason you should have been suffering all weekend. Your pains sound darn close to my onset pains. Anyway, I hope you get relief soon. Take care of yourself.
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