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Rheumy Update

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#1 kiwimum03


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Posted 26 October 2006 - 04:26 PM

Hi Everyone,

I saw my new rheumatologist today. He was really nice, and I and my husband were greatly impressed.
He said he has a fair idea of what could be wrong with me, but wants to wait until I have my bloods re-done and I also have to have a pelvic x-ray and bloods to check for Ankylosing Spondylitis.
He isn't sure if I have AS, but he wants to rule it out, as my father had some bone disease from a young age, but we don't know what.

He said that since my bloods so far only show a raised ANA and inflammation markers, he wouldn't focus much on them and go mostly from my clinical symptoms (which sounds like a good rheumatologist should).

So I have another 4 week wait until all the tests come back again, and I see him.
He says from my clinical symptoms he is leaning towards "something", but I totally understand him not wanting to put a label on it until he is sure.

One thing he did say and that was that I wasn't crazy (yeah!!!!) and that I definately have something going on. I spent well over an hour with him talking and being examined.
He said my previous diagnosis of possible Fibromyalgia was wrong and that I don't have it. But I do have carpel tunnel in both wrists.

Well, thats all for now. I feel quite a sense of relief after seeing him and I feel confident in him. So thank you Sherrill for letting me know about him, he's very good.


#2 Heidi


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Posted 27 October 2006 - 03:41 AM

Hi Irene,

That all sounds wonderful! Well, not that you have "something", but that you had such a good experience with your new Rheumatologist. Doesn't it make all the difference in the world when you finally feel "heard" and the doctor tells you it isn't "all in your head". I am really happy that your visit went well. Do keep us posted on what the tests show and what he finally tells you.

Warm wishes,

#3 Guest_Sherrill_*

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Posted 27 October 2006 - 01:56 PM

Hi Irene,

I'm so glad that you had a good consultation with the rheumatologist!! He was recommended highly to me before I first saw him too, and he didn't let me down. He apparently goes overseas often in the pursuit of more information, particularly about scleroderma also. It was he who found out what was going on with my kidneys too, and sent me to the correct specialists for that. BTW, I seem to remember that you also were having some kidney involvement? Did he have anything to say about that?

Like you, my husband and I liked him straight away, and felt he was well versed in his field. He didn't rush me either, or make me feel I was imagining anything!

I haven't seen him for a few years as now my primary specialist is my kidney specialist, but I can consult him any time if I need to.

Good luck with all your tests, and let us know how you get on with them.

#4 kiwimum03


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Posted 27 October 2006 - 10:20 PM

Hi Sherrill and Heidi,

thanks for your responses.

Yes, it was great to have my symptoms and feelings validated, and he was so nice about it all, and never made me feel rushed.

Sherrill, I did ask him about the scarring they saw on my u/sound of my left kidney, and he said he wasn't worried about it at all, as it was very mild, and he felt that it had probably been there for a long time and just wasn't picked up before.
But he is aware of it, so if anything changes he will be on top of it.

He gave me a new anti-inflammatory to try, which I probably can't post the name here, but I am nervous about taking it as it is very new and they are still trialing it from what I can gather., and I don't do too good with anti-inflams with my bloodpressure and they make me dizzy.
But he does want me to give it a go, as my elbow and hands have been swelling up lately.

I have a 4 week wait until I see him again as he is going overseas to a conference, which by the sounds of it he does often, but it is good to know he keeps up with all the latest info.

I feel very confident in him to find out what is wrong with me, so it makes it easier to wait until I can see him again.

take care, I hope you are both having a good week,
And thank you for taking the time to keep up with me!
Big hugs,

#5 Steve


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Posted 27 October 2006 - 10:50 PM

Hello Irene, Steve here (moderator). I just read your post about the new anti-inflammatory that you have been prescribed. Don't worry about mentioning the name of it, so long as your doctor has allowed you to take it, it is okay to post the name. You will then get some feedback from other members who have taken it.
Thanks for posting, and I look forward to your next message.
Take Care,

Steve Dickson
ISN Assistant News Guide for RSS Newsfeed
International Scleroderma Network (ISN)

#6 Shelley Ensz

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Posted 28 October 2006 - 05:03 AM

Just to clarify the mentioning of medications, we allow the mention of any mainstream prescribed medication, except for those that are addictive, such as some sleeping medications and narcotic pain relievers, or things that can create a "high" if abused.

We try to avoid mentioning those types of meds since drug addicts sometimes join illness message boards trying to find people they can befriend or burglarize to attain drugs illegally. It's a sorry thing that things like that can happen, but they do, and this guideline helps protect us all, and discourages those type of people from joining our forum in the first place.

If you ever receive a private communication from someone on this forum who wants to know whether you use addictive or narcotic medications, please report it to the Forum Administrators right away. That should be between you and your doctor, and nobody else.

On the forum, you can report narcotic pain medications as simply being "pain medications" or "sleep medications". There are a wide variety of them and not all of them are addictive or sought by drug abusers.

We all have a right to privacy, too, so never feel obliged to answer if any of us ask about your particular medication use. Sometimes we ask just for the sake of conversation, and certainly, none of us are doctors and can't advise treatment, so it is largely beside the point. Even though it is a understandably a pretty popular topic of conversation around here. ;)
Warm Hugs,

Shelley Ensz
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#7 kiwimum03


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Posted 28 October 2006 - 07:24 PM

Hi everyone,

thanks for the replies about posting meds. I have never posted about meds before so I was a little unsure.

The new anti-inflam he gave me to try is called ARCOXIA 90mg(etoricoxib), and he gave me two trial packs.
Because it didn't come with an information leaflet, I tried to look it up on the web, but had trouble finding much info about it. Side effects, constraints etc.

I have high bloodpressure that is medcially controlled and usually find anti-inflams push it up and upset my stomach.

I had a terrible night of pain, hardly slept a wink, and took some painrelief twice during the night, and so this morning I thought I would try the Arcoxia.
It has reduced some swelling in my joints, but I still have alot of pain.

I am unsure whether or not I can take paracetamol as well with it, I guess I should ring the pharmacy.
It is a once a day tablet which I am not used to. I used to take the anti-inflams when needed throughout the day.
Right now my arms are screaming at me in pain. So I am going to have to leave this message here, give in and take something else.

Is anyone else on Arcoxia?


#8 debonair susie

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Posted 30 October 2006 - 09:10 AM

Hi Irene,
Glad to hear you made great headway with your rheumatologist and that he is so attentive to your health needs. I've also been very fortunate with rhematologists... going to the dr isn't at all fun for any of us and when they can walk down our symptoms and come up with an answer that makes sense.... it really is nice.
Take care.
Hugs, Susie
Special Hugs,

Susie Kraft
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International Scleroderma Network (ISN)