Wooohooo Cool new Rheumy...

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 3/18/2009 8:12 AM (GMT -7)   
Okay, went to see ANOTHER doc (frankly, I'm tired of seeing all of them). However, this doctor left me with hope, (which I haven't had in a while) and courage (that on bad days I could not seem to muster) to face my days...

For one, I am not the only one to be on steroids for years (2.5 or so and counting for me). So my disease is steroid resistant, if it works, you can still use it. So many other docs see it as the end of the world my being on it so long. Nothing seems to control the disease near as well.

Next, he and his nurse practitioner, did the thorough examination. Not only that but the vampires took at least 7 vials of blood (think it was near 10 but didn't want to look). I am also glowing right now. That glow coming from the southwest, it's just me, they took so many x-rays.

I was in that office for nigh on 4.5 hours. But they didn't prescribe anything yet, they are probably going to use some other strong meds, but he wants to check all the labs & films first. But this is the first time in a while, that there may be some, just a little, hope. If we can get the inflammation down, so can the pain...

Oh, and he too has lectured me to see an ophthalmologist. My GI & PM/Neuro have been harping on my for months(maybe years)...but I'm so sick of these guys...ya know what I mean?!?
"The earth laughs in flowers"


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13470
   Posted 3/18/2009 9:55 AM (GMT -7)   
Awesone. I just went to a new rheumy myself in Dec. and omg I could not believe the difference. Yes, for some reason they get that vampire effect going on new patinets,lol. When I went in for the labs the lady is like omg he is testing you for everything under the sun. She had to get her book out on some because she did not know the codes,lol. I yes got to the xrays too, how funny. I really like my rheumy for sure.

May I ask why you are on Predisone? Get to feeling better. My rheumy did not put me on any meds till all the blood work was back and the xrays, that was done on follow-up visit. Hope you get to feeling better. Hugs, Susie


Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 3/18/2009 10:07 AM (GMT -7)   
Oh, I have Crohn's with too many extraintestinal symptoms (you name them, I probably got them).

Straydog: what you see a rheumy for?

Oh, I did forgot to mention, his thorough check on the axial spine...does it hurt when I do this...oh LORDY, it hurts NOW...I woke up and my neck is so SORE I cannot bend it. Not to mention, those tests..."does this hurt?"...unless i'm in a 30 pain on a 10 scale (meaning I'm in a ball and crying and don't respond to anything), I will probably underespond (you know...gotta suck it up...I ran 5 marathons and too many other smaller races to count...oh and in the Navy too). Anyone else do this?
"The earth laughs in flowers"


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13470
   Posted 3/18/2009 10:11 AM (GMT -7)   
OMG-I have both crohns & UC,lol how wild. I just started Humira in Dec and then got bronchtitis for 6 weeks and I am going to start back on the Humira tomorrow. I was getting a positive result. I have Lupus induced by Remicade. I had my 1st resection in 02. Crohns & UC are both horrible diseases. I also take Entocorte, Lialda, Imuran plus my Humira for these lovelys. Hugs, Susie


Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 3/18/2009 10:21 AM (GMT -7)   
OMG back at you...you have both?!!! No wonder why you are in the chronic pain forum. This disease is literally a pain in the but...Had 2 surgeries there...now I can't sit...
Some of my pain also comes from the arthritis (rheumatoid like). Got it in both hands and the illeosacral joints...here's hoping...
"The earth laughs in flowers"


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13470
   Posted 3/18/2009 11:05 AM (GMT -7)   
Becoming,
 
Boy its the pits putting up with this crap. Yes, my UC dx (6-05)came after being very ill and we knew it was not all CD going on. Many of the same symptoms but lots of different ones . I was put in the hospital I was so sick and then had the lovely hose up the tail pipe and had a colon full of ulcers so got my dx for that to go with the CD. March of last year developed a fistula that came out thru my old hysterectomy incisions. Had no clue what this thing was and it just kept growing. I finally showed it to my gi, oh, it was just nasty. So, back on Flagyl and back on Remicade and it took care of the fistula. That was my 2nd experience with those nasty things, The first one was in an area that I don't care to mention on here.lol.
 
I have skin related issues thanks to CD too. Its amazing how one disease can hand down so many other problems.
 
Have you tried any of the TNF blockers like Remicade or Humira? I have a wonderful gi and it took some doing to finally locate one that didn't just hand out predisone. I go into congestive heart failure on any steroid so its out for me. I also have COPD and it would be a great drug for when I get in trouble there, but its out of my league. I am now on oxygen 24/7 and have been for 2 yrs. Saw my gi yesterday and I was telling him about my rheumy and how floored I was at the knowledge he had of CD & UC, infact he increased my Imuran by 50 mg, so now I take 150mg of it. My GI says that there is a cross over with the GI's & Rheumys which I was not aware of.
 
I have dealt with CP for 20yrs and seen several CP drs. I have a Medtronic pain Pump and a new PM dr who is a miracle worker in my eyes. Former one closed down and went back to putting people to sleep for surgery,lol. Good place for him and I loved him too.  Totally under educated in pumps and medications. New PM dr decade of experience with pumps and it the leading pump dr in the state of Texas. Someone was looking out for me when he ref me to her, me & 45 other pump patients. She is the one that said my former pm dr was a good dr but terribly under educated and I think that is very true when we are at the hands of ansethesiologist turned PM dr. Their experience and education is limited until they have many years under their belt. My CP is due to back problems and facet joints. In need of two new knees thats next. Between the Lupus, osteo-arthritis and crohns arthritis the pain was too great. I ended up with the pump because orals meds that I could actually tolerate lost their punch too quickly and we ran out of meds to give me. My dr said because of that problem and too much pain in other parts no medication in the world would ever touch the pain unless I was a zombie. Now that I have a good PM dr with my pump it was the best thing that ever happened to me, have had it since June of 05. I have reached a point in surgery if they take something out they have to put something back, have ran out of extra parts,lol.
 
I hurt for you having surgery and not being able to sit. Do you have setons? Do you ever go over to the CD forum? Back in 02 when my world fell apart that placed saved me. Thats how I found HW.
 
So, what is your rheumys thinking with you as to what is going on and where he may go with you? Sounds like you are on the right track. Hugs, Susie


Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 3/18/2009 11:46 AM (GMT -7)   
On cimzia now...failed Remicade...Humira, as said before, might as well have spit into the wind...the cimzia has allowed me to come down to 5 mgs of prednisone. (Remicade allowed me to come down to 10 mgs.) otherwise I'd still be on 30 or more mgs, and would have driven my husband and all other human and non-human souls away(wow, I make the WW of the West look like Glenda...)

I am lucky that I never had fistulizing disease. Just tons of fissures, skin tags, and necrotic, thrombosed hemmies...Did you have your colon removed?

I too started on the Crohn's portion of this site(I spend time in both)...However, I had unrelenting pain...pain had defined me, and controlled me and most aspects of my life. I couldn't hide nor run from it. It found me no matter what rock I tried to hide under.

Also, some people do not look so kindly to others who try and relieve the pain. Here, I can talk about it and it's issues without feeling like a criminal. Heck, I, myself, in the beginning of this arduous journey had to come to acceptance to be able to take the meds...I was afraid too...I didn't want to become what the evening news protrayed...

My rhumey is going to try the old school meds (methotrexate and sulfasalzaine(?)). My rheumey sees more crohn's & UC patients than my GI does...weird huh? I am currently on ASAcol and so many other meds that I get pill fatigue. I sit and stare down my pills trying to force myself to take them (thankfully I don't have to take Pentasa anymore...ever see how BIG those pill are).
"The earth laughs in flowers"


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13470
   Posted 3/18/2009 12:44 PM (GMT -7)   
I am very fortunate in the gi dept. My dr is great, gawd I had some toads before him. I have been with him 6 yrs. In fact, he is the one that said I am medically retiring you, file for SSD and I will write them any kind of letter they need or want. He said I do believe that people should work they just do better, however, you will be my 2nd patient I have ever retired and that is what you will do to save your health. He said you have a very high stress job that is contributing to your stress level and just the disease itself and the stress of being an unhealthy sick person is why you have no business being employed, end of story. I had been under his care a year when he made this decision. In one year my disease was in no better shape than when we first started. But on my very 1st appt he told me that we had a very long rough road ahead of us. Boy, I remind him ever so often of that statement. And, yes, I filed for SSD and git it w/o a problem.
 
No, I still have my colon. I had 12 inches of my small removed and resected. It was an emergency surgery done on vacation while in Akumal, Mexico. I had a complete blockage and abscess. Had it perforated I would not be here today. Those guys saved my life. They first thought it was my appendix so they took them out but they discovered them to be just fine.  Thank goodness he had the knowledge to move forward in finding the problem, so he just opened me up lower and found a complete mess inside. I just know that I have never experienced any pain like I did then, I prayed for 4 days to die. My own gi cannot get over the history of my surgery in Mexico, it blows him away.lol. Gotta do what ya gotta do sometimes. One thing we know for a fact, my resection saved my life, but it did nothing to give me better quality of life. No way they would let me get on a plane in that shape. Hell, my surgeon had to give me a letter of recommendation saying I was fit for travel before I could get thru customs.
 
One thing that I have pondered on alot is 6 weeks before this CD surgery I had my galbladder out. I have seen on the CD forum that many had their gallbladders out and shortly thereafter were having bowel resections. There has been talk of them being connected.
 
The CD forum I joined in 02, back then we had a group on there that was the best. Over time the oldies disappeared one by one and then the new faces started popping up like crazy. Over time the attitude and overall atmosphere took a nose dive in my opinion. Back in the old days that forum had a group with a sense of humor second to none and lets face it, with any disease you gotta have humor and be able to laugh once in awhile.I hang here more than any place. I also hung out here back then too. I spent alot of time at HW.
 
I took asacol too and it made my hair fall out and the side effects got me. Then my current gi said well, Asacol will do nothing for where your crohns is located. Well, I looked it up and he was right. Yes, I took Pentasa too for a long time. My gosh swallowing one of those horse pills, 16 a day, no. I am on Entocorte and have been since 05. Even tho its a steroid I can tolerate it fine because it does not dissolve until it hits the small bowel. When he 1st put me on it, it was with much reservation because of my steroid issues. But he follwed me closely for 6 months and then relaxed. I had to in every week and that was 60 miles round trip and sitting in a car is real difficult for me as it kicks up my pain. I tried weaning off the Entocorte after being on it so long, I wondered if it was really still working or not, I found out yes it was, I never made it off and I was right back up to 3 pills every morning,lol. Did my own experiment. Then told him about it, he laughed at me told me I got what I deserved. They laugh and call me volume 3 in his office because of my charts being in volumes.
 
I was on Remicade pretty much as the first hand drug with my gi when I first went to him. There was not much left but the big guns. I did Remicade the 1st time for 3 years every 4 weeks. I had already started the Imuran which he says enhances the effects of the Remicade. Have you been on Imuran? It does help me. I have done Remicade on 3 different times in 6 yrs. But, after it inducing Lupus I am done with it.
 
I have done alot of reading on Cimzia and it is a drug that I would entertain trying if Humira fails me. So far its been very good to me and for the first time in 7 yrs we have found something that appeared to help more than anything.
 
With your statement that your rheumy sees more CD & UC people than your gi, thats a pretty good indication why you have have not been successfull in any way with your disease. I was shocked my rheumy knew so much, because so many drs just roll their eyes when you say CD. Its a look from Mars in their eyes. Learned early not all gi's are created equal and not all gi's  knows squat about CD & UC. Using the old prednisone as the golden treatment is in the days of past. I do know of many prednisone dependant people that were able to get off the roids thanks to Remicade. After my GI said what he did yesterday abut the cross with gi's & rheumy's it makes sense to me now why my new rheumy knows so much about both dieases.
 
It very much sounds like your new guy is on the ball and may be can can bring some severely needed relief with your CD. My gi says CD is a very indivualized disease and the meds have to be tailored to each persons needs. It is a long drawn out process of trying till you hit the magic meds to feel better. Don't give up I bet this rheumy gets you feeling better.....Susie


Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 3/18/2009 2:28 PM (GMT -7)   
My GI is great...but, the rheumy is supposed to be THE best in the AZ...so I guess he gets a lot of concentrated patients for the GIs in the valley and rest of the state. My GI is trying everything, but he want other perspectives...wants to do what is effective...He(my GI) was the one who insisted I go see this particular rheumatologist (set up referral and faxed over my filebusting chart.)

Heck, with the SSDI, My GI told me the same thing. I just put it off cause I want to get better, and I have this little (okay big)mental hangup that if I do this I am giving up. I want remission so bad (and I experienced it for about 5 years too!).

Oh, Sniper is too funny sometimes (on the CD forum). I read some of his posts just to cheer myself up. Kinda like I do with the flying bunch (time to fly posts).

Though I have to see sooooooooooooo many docs, I think they are getting a better picture of my DD. (they keep in contact with each other). And I am way open about EVERYTHING with all...I get scared sometimes because the abusers have made me double and triple check everything....sad world....ain't it?
"The earth laughs in flowers"


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13470
   Posted 3/18/2009 2:54 PM (GMT -7)   
Oh yes, Sniper is a hoot for sure, the humor is something else. Did you ever know CrohnnieTwo, oh her & Sniper together splits your sides. Those two were a riot and kept everyone crackng up.
 
Oh wow, lucky you, 5 years of remission, I am impressed and jealous but happy at the same time. I have forgotten what remission is, never have had it although still fighting and looking for it. I will always do that.
 
I worked as a paralegal for 20yrs plus, my job required me to to be with the atty in trial, sit in on depositions, I went to all settlement conferences in addition to running his office. I did all the errands, banking, signed up new clients, oh the list went on. Loss of bowel control put an end to that. It took me a few months to come to terms with filing for SSD. It was a bitter pill to swallow. Then everything including the depression took a hold and I got lower than a snakes belly and just bottomed out emotionally. Then I started the climb back up and I am getting there. Its a different life, its whole different ballgame. Not what I had planned for me at this age at all. Between being put on Humira and a new pain dr I am hopefull, that was a luxury I didn't have for a long time.
 
Yes, alot of this stuff now a days is scarey for sure.But, some days we have to just roll with the punches as they say lol....Susie

New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, December 08, 2016 1:11 AM (GMT -7)
There are a total of 2,734,543 posts in 301,224 threads.
View Active Threads


Who's Online
This forum has 151337 registered members. Please welcome our newest member, hellokd10.
159 Guest(s), 3 Registered Member(s) are currently online.  Details
whatdoigotDOC!, maria2016, platinumpixie


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer