Rheumatology appt tomorrow

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elcamino
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Date Joined Sep 2005
Total Posts : 1744
   Posted 5/17/2006 11:12 AM (GMT -7)   
I see my rheumatologist tomorrow morning.  I generally see him once a month for bloodwork, etc..., so it might not seem like such a big deal.  Except tomorrow, I get the results back from the testing he ordered on myositis, and related stuff.  I also may be either giving up enbrel because I have not had a great response to it so far vs. # of infections, or I may be adding methotrexate to the mix.  My rheumatologist is brilliant, but he is also on the conservative side.  Not sure exactly what he will recommend at this point, but your prayers are certainly requested--please?
 
At one point, he mentioned that kinaret would be the next drug to try, but that's a daily injection.  I don't really want to go there...
 
Elcamino
Current dx: Rheumatoid Arthritis
Suspected dx: Early Lupus/MCTD; Inflammatory Bowel Disease
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 5/17/2006 3:02 PM (GMT -7)   

wow, the best of wishes to you.

so are these like really bad infection?  bad enough to stop Enbrel?

i had bouts of strep, thrush, and skin infections while on Enbrel but remained on it till i found it did really nothing for the RA after almost 2 years.

the Humira has caused blood dyscrasias in me and just recently a pneumonia...but it is helping the RA finally.

would you be able to do Kinaret and MTX? not sure if that's a combo. what about Imuran?

how long have you been on enbrel again?

well, i hope all goes OK & the right decisions are made.

erin


Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


bromark
Veteran Member


Date Joined Oct 2005
Total Posts : 600
   Posted 5/17/2006 5:04 PM (GMT -7)   
Elcamino
I see mine tomorrow too but my appointment is just a routine visit to look at how things are going. I will be praying for wisdom for your doc and you and that together you will be able to find something that works for you.

Mark
We make a living by what we get; we make a life by what we give.
Sir Winston Churchil
 
A cheerful heart is good medicine,
but a crushed spirit dries up the bones.
Proverbs 17:22


RAGirl
Regular Member


Date Joined May 2006
Total Posts : 28
   Posted 5/17/2006 5:12 PM (GMT -7)   
Wishing you both luck at your appointments tomorrow. Let us know how they go.

elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 5/17/2006 6:41 PM (GMT -7)   

Thanks everyone.  Erin, what is blood dyscrasias?  It sounds perfectly evil :)  I got a lot of bruising and those ugly red spots (petechiae) when i was taking humira, but I don't actually know what my blood counts were.  No, the infections I have had have all been relatively minor infections.  But there have have been so many of them, and my rheumatologist told me he wants to see a definite benefit before leaving me on the enbrel.  I've only been taking it for 3 months now, but I was on humira for 3 months too.  Rheumy says I should have felt much more benefit after the combination of those two drugs. 

Honestly, I don't care what drug(s) I take as long as they help.  If enbrel isn't doing it's thing soon, I may be ready to give up on it.  My lack of response to all of these drugs may be slightly genetic (according to rheumy).  My mother didn't respond to a lot of drugs, and other drugs affected her blood counts.  They only had remicade back then, so she never did try any of the tnf-inhibitors, but I think she tried just about everything else.  the only thing that really helped her without lowering her blood counts was prednisone.  So that evil drug became the mainstay of treatment for her.

Elcamino


Current dx: Rheumatoid Arthritis
Suspected dx: Early Lupus/MCTD; Inflammatory Bowel Disease
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 5/17/2006 8:02 PM (GMT -7)   
:-)  i'll start with a funny story 1st.  in old Greek meaning, dyscrasia means "foul temperement of the 4 humors"  devil hah...so if i were alive way back when they'd most likely blood-let me or leach me to excise the bad tempers. lol tongue
 
what happenned as result of the RA & all of the meds is that it caused a significant lowering of my WBC's (immunocompromised), and something that is called "leukopenia" or leukocytosis which basically is a high marked leukocyte count.  (this is why close blood monitoring is mandatory while on TNFs and DMARDs).  is it leukemia yet? nah, but it needs to be watched and my symptoms in check and blood levels very strict.  i go pretty much every week for my CBC draw (if i feel like crap i play hookie).
 
but a dyscrasia in general is any hematological disease.
 
i try not to think about it too much...serves no sense to.  i'de rather have a few years of great than a whole lifetime of nothing.
 
have a good night.
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


curley
Veteran Member


Date Joined Mar 2005
Total Posts : 4305
   Posted 5/18/2006 2:52 AM (GMT -7)   
Elcamino Hi,I hope that every thing turns out ok.I was on Mwethotrexate for over two year's and it worked well for me I gave my self a shot once a week and you don't even feel it going in.I will say that the shot form is better than the pill form because you don't have alot of the side effect's that you have with the pill form.Good luck and please let us know how it whent and how you are doing.
Thanks
Curley......
a.k.a.Mela...........


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 5/18/2006 4:20 AM (GMT -7)   

Thanks for the encouragement Curley.  As long as I find a drug that works for me, I don't really care much the form it comes in; injection for me has become routine.  I think it helps that me and my husband were in fertility tx to conceive our twin daughters and I had to do follistim injections for a while (which are daily for the first few days of your cycle). 

Erin, no wonder blood dyscrasias sounds like such an evil thing--it is.  Hopefully, it won't evolve into leukemia for you; I understand now why you have to have weekly monitoring.  I suppose you have to weight the costs and benefits of every type of tx versus the actual condition.  From previous posts, I've learned that your RA is out of control, and I'm sure you're in a lot of pain.  In your situation, it may very well be of more benefit to continue with the humira with close monitoring, especially since it seems to be working for you right now.  My problems sound a lot less serious than your's.  I would probably still be on NSAIDS if I could take them (can't because of significant GI issues).

Elcamino
Current dx: Rheumatoid Arthritis
Suspected dx: Early Lupus/MCTD; Inflammatory Bowel Disease
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 5/18/2006 7:59 AM (GMT -7)   
What times are your appts Elcamino and bromark? Good luck to you both, let us know what happens!
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 5/18/2006 8:03 AM (GMT -7)   
hey "el",
that's such a cool name.  do you have an ELCAMINO car? :-)
speaking of evil bloodletting, off to the docs office for bloodwork in a few minutes.  luckily i'm able to walk pretty darn good today...so it'll be enjoyable.
 
yeah, just this past month the RA seems to have "shut up" LOL. tongue the joint pain is still really bad, but at least i'm not bedridden & on strict bedrest anymore.  it is still active and severe but in my book? that doesn't matter as long as i can go outside and walk some.
 
hey, did you ever get a colonoscopy?  you've mentioned GI problems a lot.  and if a person has RA or any AI disease, sometimes a thing like UC or Crohns can occur too. (unfortunatley i make a good example of that! LOL) for years i said, "well, at least i don't have any gut problems."  the bowel Gods laughed i suppose.
 
so "el" i truly TRULY wish you a good combo of meds to get things in check.  when you feel ok to write after your appointment let us know what happenned.
 
like Duck says, "I've got everything crossed for ya!"
 
erin
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.

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