After my Rheumy visit yesterday......more bad news!

[Roxie2007]

My dr. appt was yesterday afternoon with the Rhuematologist at 3:45…we didn’t get into see the dr. till 5:30!!!!!!! He was nicer yesterday than the previous visit….So that was a plus for him! He said my blood work came back fine (it didn’t show Polymyalgia Rhuematica) BUT he says I have it. He said, “Like IC you can’t always go by tests alone you have to go by symptoms and what meds work to improve it”. Then too….for the past 48 hrs I’ve been having horrendous jaw pain…..both sides of my jaw where the hinges are. That is another problem called Giant Cell ateritis (not arthritis). This is potentially a much more serious condition and some time arises after the onset of PMR. It can cause artery swelling in the brain, blockages and stroke….what wonderful news huh?? SOOO He put me on a low dose of steroids. He said IF this helps with the PMR symptoms that’s great….if not he’ll try a higher dose…..but IF the Giant Cell problem gets worse….then I have to be on 65mg of steroids to conquer that! That is so damn scary! I don’t want to be on that much steroids and have a barrel shape and risk glaucoma and all kinds of other major health problems…….gees are we all doomed because of IC causing all these other problems??
My bone density test came back good as did my levels for vitamin D C B12 etc……..so I was happy with that.
The dr. wants me to be off work for 2 weeks to rest and recoup and see how this problem goes and how the meds react etc… So I called into work last night and dropped the news on them that I’d be out till the 23rd. Guess they took it ok.
I found out that this dr. IS a pain management dr. also so that is another plus for him. He had a totally different personality this time. I guess he was just having a very bad day at my last appt. Mike was impressed with him this time also.
I sure hope these steriods work for me........at the moment they are keeping me wide awake......even with taking the Lunesta and Elavil! It's 4am......been awake since 1am......Y'all take care! Roxie

[GriffsMommy]

Roxie :grouphug::grouphug: I'm so sorry to hear about the new diagnois but you know what is going on then you can start treating it. I will :pray: and keep my fingers crossed that the low dose of the steriods are all that you need. You have problems with taking steriods in addition to the normal side effects don't you? All of these health problems are so frustrating! I hope that you start to feel better soon and the time off work will be just what you need to start to feel better. I took off for the rest of the week after my hydro just to rest up so you def need that time off.

[Roxie2007]

HI Christine!
Thanks for your thoughts and prayers.
Yes I shouldn't take steriods because of my Barrett's Esophagus but looks like I'm going to have to try to take it for now. I hope I can continue on the low dose with out side effects.
I do need this time off. I'm completely exhausted and SO tired of being in pain day in and day out.
I hope you have a great painfree day! Roxie

[traceann]

Oh geesh! I am with Christine - I too will keep fingers crossed that the low-dose steroids do the trick!! I was on them for about 4 months a year and half ago, I just thought that 6am was a GREAT time to get up, ugh. Had it started getting any earlier in my wake up times, I'd have never gone to bed eventually! ;)

I too hope the time off work is just what you need to rest and get your game back! What a great opportunity if you have some small projects to work on for fun and just for you! :) Always a good idea to keep the brain occupied on something else, while letting the body do it's thing... ;)

Hugs,
Tracey

[ICNDonna]

I don't have anything to add, but I'm with Christine and Tracey in sending well wishes.

Donna

[vm]

{{{{Roxie******** Just sounds like no fun at all.... :( Have you checked around online to see if there is a message board for these conditions? The ICN has been so helpful to so many of us, giving us info. we never got from our doctors, so I wondered if there is one for your newer diagbnoses.

[Roxie2007]

HI Thanks for all the thoughtful wishes. I have my fingers crossed that the steriods do help cause I'm in a lot of pain at the moment. I just called the dr. to see if there's a pain patch he could prescribe for me since I have trouble taking pills with my Barrett's and IC problems.
I found a small online forum for Polymyalgia and the ladies there are very nice. It's based in Canada. They have given me some helpful ideas for dealing with this problem. Thanks again.....Roxie

[ktrn79]

Glad to hear your appointment went well. I hate predinosone, I have to take it occasionally for my allergies/asthma. But it helps those problems. Good luck and talk to you soon.
Kate in NH

[Roxie2007]

HI Kate,
So far so good on the Prednisone. My jaws are feeling better (they were hurting because of the Giant Cell Arteritis. I think my aching is starting to feel better too. I go back to the Rheumatologist next Wed. I hope to feel a lot better by then and then he'll lower the steriods down slowly. I have my fingers crossed. Thanks! Roxie

[leelee88]

Roxie,
My heart goes out to you.. It seems like we all get other problems with our health..Like IC isnt enough..I am just sorry you are having to go through all this(((((((((hugs)))))))))))))

[justic74]

Hi. I was just diagnosed last month after 4yrs of suffering. Although I have had medical problems all my life. Recurrent bladder and kidney infections, kidney stones and malignant melanoma. My question is That I have to take pain med. and I'm wonder if they aggrevate my ic? Is it better to use a patch? I'm sooo sick of all these pills!!!
Thanx.

[mary124]

Roxie: Sending warm wishes and hoping you are on the road to recovery.

[Roxie2007]

Thank you Mary! Same to you! Happy Easter.....Roxie

[sportydiamond_2]

:smile tee My dr. appt was yesterday afternoon with the Rhuematologist at 3:45…we didn’t get into see the dr. till 5:30!!!!!!! He was nicer yesterday than the previous visit….So that was a plus for him! He said my blood work came back fine (it didn’t show Polymyalgia Rhuematica) BUT he says I have it. He said, “Like IC you can’t always go by tests alone you have to go by symptoms and what meds work to improve it”. Then too….for the past 48 hrs I’ve been having horrendous jaw pain…..both sides of my jaw where the hinges are. That is another problem called Giant Cell ateritis (not arthritis). This is potentially a much more serious condition and some time arises after the onset of PMR. It can cause artery swelling in the brain, blockages and stroke….what wonderful news huh?? SOOO He put me on a low dose of steroids. He said IF this helps with the PMR symptoms that’s great….if not he’ll try a higher dose…..but IF the Giant Cell problem gets worse….then I have to be on 65mg of steroids to conquer that! That is so damn scary! I don’t want to be on that much steroids and have a barrel shape and risk glaucoma and all kinds of other major health problems…….gees are we all doomed because of IC causing all these other problems??
My bone density test came back good as did my levels for vitamin D C B12 etc……..so I was happy with that.
The dr. wants me to be off work for 2 weeks to rest and recoup and see how this problem goes and how the meds react etc… So I called into work last night and dropped the news on them that I’d be out till the 23rd. Guess they took it ok.
I found out that this dr. IS a pain management dr. also so that is another plus for him. He had a totally different personality this time. I guess he was just having a very bad day at my last appt. Mike was impressed with him this time also.
I sure hope these steriods work for me........at the moment they are keeping me wide awake......even with taking the Lunesta and Elavil! It's 4am......been awake since 1am......Y'all take care! Roxie

[Bessie]

So sorry Roxie that you are having to deal with another disease. You really have been through it all. I just want you to know that you are in my prayers :pray: :pray: :pray: and please take off as much time as you need to get to feeling better.

[sportydiamond_2]

:pray: My dr. appt was yesterday afternoon with the Rhuematologist at 3:45…we didn’t get into see the dr. till 5:30!!!!!!! He was nicer yesterday than the previous visit….So that was a plus for him! He said my blood work came back fine (it didn’t show Polymyalgia Rhuematica) BUT he says I have it. He said, “Like IC you can’t always go by tests alone you have to go by symptoms and what meds work to improve it”. Then too….for the past 48 hrs I’ve been having horrendous jaw pain…..both sides of my jaw where the hinges are. That is another problem called Giant Cell ateritis (not arthritis). This is potentially a much more serious condition and some time arises after the onset of PMR. It can cause artery swelling in the brain, blockages and stroke….what wonderful news huh?? SOOO He put me on a low dose of steroids. He said IF this helps with the PMR symptoms that’s great….if not he’ll try a higher dose…..but IF the Giant Cell problem gets worse….then I have to be on 65mg of steroids to conquer that! That is so damn scary! I don’t want to be on that much steroids and have a barrel shape and risk glaucoma and all kinds of other major health problems…….gees are we all doomed because of IC causing all these other problems??
My bone density test came back good as did my levels for vitamin D C B12 etc……..so I was happy with that.
The dr. wants me to be off work for 2 weeks to rest and recoup and see how this problem goes and how the meds react etc… So I called into work last night and dropped the news on them that I’d be out till the 23rd. Guess they took it ok.
I found out that this dr. IS a pain management dr. also so that is another plus for him. He had a totally different personality this time. I guess he was just having a very bad day at my last appt. Mike was impressed with him this time also.
I sure hope these steriods work for me........at the moment they are keeping me wide awake......even with taking the Lunesta and Elavil! It's 4am......been awake since 1am......Y'all take care! Roxie