New diagnosis for my husband?

[Loria Chaddon]

Well, we met with one of the two Rheumys here in Alaska yesterday.  He says he does not think my husband has RA, per se.  Rather he believes he has Scleroderma and/or Mixed Connective Tissue Disease.  We are waiting for the test results.  He wants to up his MTX from 7.5 mg a week to 12.5 and put him on Plaquenil.  And he suggested going to sub-cutaneous injections of the MTX.  We are considering the Plaquenil for the short term to give him some relief until we are able to see Dr. S in June.

To say this guy was against AP was putting it mildly.  He said there was no proof that it works.  And it is possible he was actually offended by the amount of knowledge we already had for RA and the matter of fact way I listed off his medical info and drug history.  Oh, dear, we did not show appropriate awe of him.  😯  At least he did not say anything about the fact that we have Scott on MWF 100 mg of Minocin. 😛 *raspberry sound* Fooey on him. 

And our internal medicine guy here sent a note over to our ANP that said he was worried by my husbands non-compliance with raising his MTX and that he is afraid Scott will continue to be non-compliant in part du toe “his wife's enthusiastic interest in a non-allopathic treatment.”  Non-allopathic, huh.  Obviously he did not read any of the info I gave him, considering I included the summary from the MIRA trial and various Peer-Reviewed Journal articles on the use of Mino in treating RA.  And he must not be aware that Mino is considered a DMARD. :headbang:

 

Just had to rant a bit.

[Goodwife]

Loria,

My hubby was dx with SD July/Aug 2006.   Before you know it, his symptoms were worsening.  Thankfully, by end of Nov. 2006 he had started AP.  The first six months were bumpy, and things got worse before they got better.  But at this point in time, 15 months on AP, his improvements are amazing.  My hubby never was on MTX or the other immunesupressant  drugs – but if we had continued to see the rheumy we were seeing, I know that is the path we would have gone down.  I hope you can 'bide your time' before you see Dr. S so that you can get on the right path.  Good luck to your husband   🙂

 

 

 

[John McDonald]

I think that less can be more. I would only offer doc two pieces of paper. I would print the abstract of the double blind MIRA study, which proved that AP works. I would also print the ACR webpage that lists Minocycline as an approved DMARD. Then I would insist that I want to try it and for long enough to be sure about it.

Let doc tell me how and in exactly what way the double blind MIRA study was flawed.

[Maz]

[user=3]John McDonald[/user] wrote:

Let doc tell me how and in exactly what way the double blind MIRA study was flawed.

Great suggestion, John. Would a nice little successful case study add a little oompff, too? Lyn_x posted the link to the Women's Day article about one of Dr T's scleroderma patients who got well on mino.

http://www.womansday.com/health/12875/i-didnt-recognize-myself.html

How could any doc in their right mind argue success like this? They'd have to be off their cotton pickin' rocker.

:roll-laugh:

Peace, Maz

[Loria Chaddon]

Sometimes I forget that not everyone is like me.  I like to gather ALL the information I can from AS MANY sources as I can find.  Then I read, process and draw my logical conclusions from the information.  And I am constantly looking for new information.  I suppose I expect doctors to be the same.  It frustrates me that many close their minds once they are done with medical school and do not seem to try to learn anything beyond that. :headbang:

I will say that after some discussion, we have decided NO on the Plaquenil.  The one thing my husband does not want to loose is his visual acuity.  The potential for macular degeneration turned him off the idea completely.  I figured it would, and I don't blame him.

Right now I feel like a tiger pacing in a cage waiting for his test results to come back.  I need my facts so that we can decide how to proceed.  Test results take too long!

OK.  *deep breath*  I have to have patience, and I know that.  We will see Dr. S in June, and see what he says as well.

Thank y'all for the input.  Maybe I will cut back on my info when we see a Dr.  Don't want to overwhelm them, huh?  😉

[John McDonald]

Maybe I will cut back on my info when we see a Dr.  Don't want to overwhelm them, huh?

Save for a precious few, they think it should be the other way around. You come in naked and they give you everything you need to know in 6 minutes, then off to the next patient. Managing doc is a skill they should teach us along with freshman composition and art appreciation; essential skills. Then again, many of you ladies had to learn this sort of thing to get along with us bull-headed menfolk.

 

[Loria Chaddon]

I don't go anywhere naked. :roll-laugh:

I usually figure the more well-informed I am, the better.  Unfortunately, that does seem to offend some types of people, like certain doctors that shall remain nameless.  Scott says that Doctors are threatened by patients that are smarter or more knowledgeable on a subject than them.  Maybe he is right.  Maybe it is ego, and maybe theirs is easily bruised, who knows.

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