It just gets worse

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junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 8/18/2010 7:49 PM (GMT -7)   
Today my vision went blurry. Called gi and he referred me to my eye dr. After over an hour of testing, calling the lab for my cbc results, my sugar was up. The eye dr confirmed diabetes, said my eyes were cloudy and swollen. She and the GI think the combination of methotrexate and prednisone has caused the diabetes. She and my GI are conferring tomorrow to see what can be done, including taking me off current meds.

I am disgusted, frustrated...

Called the mayo today to ask about the blurry vision, they thought it was a good idea to see eye dr but they thought it was the prednisone, so they were probably right.

After all of this.. I think I am firing my GI and finding a new one..going to call the mayo and see if I can get in for an appointment because I don't know where to go from here.

I just don't know what to do ...
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009
Diagnosed with Crohn's March 2010- Mayo Confirmed May 2010
Methotrexate injection, Prednisone, Colestipol.Nexium, Propranolol, Vivelle patch

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/18/2010 7:56 PM (GMT -7)   
Oh, June! You just don't get a break there, do you?

I'm so glad you decided to phone your doctors for advice.

I don't blame you for being frustrated: you don't need this.

:-(

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

flowery
Regular Member


Date Joined Jul 2008
Total Posts : 440
   Posted 8/18/2010 8:17 PM (GMT -7)   
Junerainbow,
So sorry...another one bites the dust with Diabetes. I was also diagnosed with type two last Aug. Been trying to keep my sugars down with diet and exercise before using meds...(because alot of meds cause D!!! lovely!) Yea, when I asked my GI about my med's causing the Diabetes he kinda rolled his eyes and said...no no no...but I wonder!
I was on Pred for a whole year and well Imuran for like 6 years now...who knows????
I don't mean to make light of it...it's all pretty overwhelming when it happens. I cried the day I was prescribed my meter. My insurance didn't cover it because type 2 can usually be prevented from diet and exercise...no clause in there for STINKEN CROHNS>...... mad It takes awhile to get the hang of things but...in the long run your gonna feel better. The only difficult times is when my Crohns is really really bad and a person sorta rely's on Carbs. In those cases...I'm sorry, I just abandon ship!
Night sweats can sometimes be an issue for me when my sugar goes a little too high ...so I try to eat a good carb before bed.
There are other Crohnies on here who will have lots of good advice for you.
Again, give yourself sometime to get used to it all.
hugs
Heather June
 
 
 
Crohns, Diabetes type 2, Fibro, (Depression and Anxiety..who wouldn't?) Back surgery on herniated L-4 L-5 and S-1. Total of 13 surgerys!


Imran 200 mlg, Asacol, Colestid, Bentyl, Lamotil, Paxil, Amitriptlyne, Nexium, Probiodicts, Vit D, Folic Acid, Lots of Potassium, Fish Oil, up to 6 Immodium a day. Oh, and one Giant Pill holder!

j_web
Regular Member


Date Joined Nov 2009
Total Posts : 205
   Posted 8/18/2010 8:37 PM (GMT -7)   
Steroids are well-known to 'trigger' diabetes. Lucky me got type 1. The doc said something like 'you must have had a tendency towards it and the steroids just pushed you over the edge'. It was funny (not) that at first, I was misdiagnosed type 2 and told to lose weight (I'm like 120 lbs) and spent the next few weeks with blood sugars in the 400's. I did lose weight - about 25 lbs that month. That was a sucky Christmas.

CD diagnosed in 2007
Spent a whole year wondering why no drugs worked for me, only to find out it was probably c-diff (which didn't show up with the regular tests) the entire time. Now I'm retrying all the meds and finding success!
Started Imuran in June 2010

Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 8/18/2010 9:33 PM (GMT -7)   
Dont it just blow you away when you get something else to worry about because your taking meds for something else you worry about ??? I'm on insulin and I know its because of some of the meds I was put on long ago. Sometimes I feel like a white mouse in a test lab...
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.

junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 8/19/2010 4:57 AM (GMT -7)   
White mouse in a test lab.... yes... yes I do.

this all sucks...Is there a tendency for some to react to all meds... I guess I wonder what happens if I can't take anything... I couldn't take the imuran because i got pancreatitis, taking me off prednisone because of diabetes, sounds like I may be off the methotrexate as well. Entocort makes me worse so that leaves what? If I keep reacting.. what happens..

I know most of you have had way worse things.. and I don't mean to complain.. This has just been a horrible eight months and I am not understanding why things can't get under control...it is getting to me...this year has been awful..between me being diagnosed with Crohn's, my son having a tumor in his jaw and needing surgery, my mom starting dementia, I lost my job, my husband lost his second job because of me being in the hospital...our house flooding, just enough... I am tired ..again.. I apologize for complaining..
Thank you all for being there for me...
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009
Diagnosed with Crohn's March 2010- Mayo Confirmed May 2010
Methotrexate injection, Prednisone, Colestipol.Nexium, Propranolol, Vivelle patch

Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 8/19/2010 5:01 AM (GMT -7)   
Geeeeeeez rainbow, you have good reason to complain and where better than here where we understand. You just complain away ,,all you need too...
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8375
   Posted 8/19/2010 7:37 AM (GMT -7)   
Well, I'd ditch that GI in a heartbeat. I'd guess it's the pred that is causing the diabetes, and since the dose you were on wasn't therapeutic for you anyway, no loss in stopping it. The diabetes diagnosis at least makes this decision clear, but I'd talk at length with Mayo before stopping the MTX.

You'll have to taper off the pred tho, so be careful! I think you'll get the hang of managing your sugar and hopefully that will be enough control for the moment so you can lose the steroid slowly. Talk to Mayo about it!

I'm sorry that you are in a place where there aren't a lot of choices in GI, and that you have to travel so far to see the Mayo team. Do you like your PCP? Can you coordinate your GI care through that DR with Mayo on the phone?

junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 8/19/2010 7:59 AM (GMT -7)   
my pcp thinks that he would be stepping on toes...so that is not an option sadly.

waiting on return call from mayo now.
thank you ....
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009
Diagnosed with Crohn's March 2010- Mayo Confirmed May 2010
Methotrexate injection, Prednisone, Colestipol.Nexium, Propranolol, Vivelle patch

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 8/19/2010 8:08 AM (GMT -7)   
If I had the option of going to Mayo (and my insurance would pay for it).
Forum Co-moderator - Crohn's Disease/Thyroid Disorders: All comments have the caveat contact your local health care provider.
I will find a way or make one. –Phillip Sidney 1554-1586
All that I am and all that I shall ever be, I owe to my Angel Mother.
The Bucket List- Have you found joy in your life? Has your life brought joy to others?
Make sure your suffering has meaning…

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 8/19/2010 9:59 AM (GMT -7)   
I've never heard of MTX causing diabetes, so you might be able to stay on that. But prednisone can definitely bring it on. Also, doesn't the diabetes sometimes go away when people go off of prednisone?
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Reduced gluten and dairy.


Go Saskatchewan Roughriders!

junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 8/19/2010 11:23 AM (GMT -7)   
They are telling me that the methotrexate amps up the side effects of the prednisone so the combination is what brought on the diabetes and to them explains why my one eye is so bad...

still waiting on the mayo..
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009
Diagnosed with Crohn's March 2010- Mayo Confirmed May 2010
Methotrexate injection, Prednisone, Colestipol.Nexium, Propranolol, Vivelle patch

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/19/2010 12:20 PM (GMT -7)   
I think they need to get you off the Pred and things will settle down. I still think you should stay on the MTX and just wean off the Pred. JMHO
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 8/19/2010 12:27 PM (GMT -7)   
I agree with all of the above. My endocrinologist watches my sugar levels pretty well because they tend to the high side because of the pred. Now that I'm low on pred its much better, so I think that lowering the pred is key and then see where you are at.

(((((HUGS)))))
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 8/19/2010 12:31 PM (GMT -7)   
We started last week tapering... I am down to 30.. on saturday I switch to 25... so yes I am in agreement. I want off of Prednisone. The drs are in discussion right now over the mtx... they are worried about my eyes ...it will take time to taper and that would mean that I am still doing the combo of the pred and the mtx. I have never been more confused.

I don't want to give up on the mtx yet...all this stress doesn't help... does it?

hugs to you guys too.
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009
Diagnosed with Crohn's March 2010- Mayo Confirmed May 2010
Methotrexate injection, Prednisone, Colestipol.Nexium, Propranolol, Vivelle patch

jan2003
Regular Member


Date Joined Jul 2004
Total Posts : 92
   Posted 8/19/2010 1:34 PM (GMT -7)   

June,

I'd be concerned about this, "... eye dr ... said my eyes were cloudy and swollen." You said it effected only one eye? Did you see an ophthalmologist? (an MD, different from an optometrist.) Did he dilate your pupils and do a slit lamp test? Which part of your eye is swollen?

Sorry for all the questions, but I've had uveitis/iritis numerous times, and also papillitis, which is swelling of the optic nerve. Both situations are very serious, can lead to blindness, and need to be treated. Every time I had the iritis, I had no pain, only "cloudy" vision, like I was looking through a dirty windshield. I always called my ophthalmologist, who would use the slit lamp test, which is the only way to diagnose or confirm uveitis/iritis, and he always prescribed Pred Forte drops, (which need to be tapered like prednisone as you improve.) The one time I had the papillitis, they used a fluorescein angiogram to see it.

I've been on methotrexate and prednisone in the past (among lots of other meds) and I've never heard of MTX causing or contributing to diabetes, only pred. I know of lots of IBD patients who've had successs with MTX. I have Crohn's throughout my colon, and I'm now using Humira every 10 days with success.

You've been through some pretty frustrating situations with your disease. I live in Iowa, too. I guess I've been lucky to have access to decent (not the greatest, but above average) physicians in my community of 60,000. In the past I have made a choice to switch a couple of times, a rheumatologist and a GI doc, when I didn't feel they were giving me proper treatment (plus we didn't see eye-to-eye.)  I feel sad that you keep getting the "lemons," and I wish you had more docs to choose from. Hopefully Mayo will keep working with you to find the right combination of meds to get things under control.

I wish you the best of luck!

Jan

 


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 8/19/2010 3:12 PM (GMT -7)   
June, just to add fuel to the fire, has anyone mentioned that this new development to could have
anything to do with the severe pancreatitis you had? Just a thought, as this the is gland that regulates
insulin. Since the damage I have to my pancreas, they constantly check for diabetes, and I've already
been told that it's likely that I will develop it.

I sure hope your luck starts to turn around ((((hugs))))
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis and lupus.
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts...

junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 8/19/2010 3:25 PM (GMT -7)   
Jan..she did dilate and she did run the slit lamp test... I am very confident with her.. actually more confident with her than with my gi.. kinda sad. The irritation and cloudy, the blurry vision is worse in my left eye but that is my bad eye.. I am actually having issues with both eyes. The mayo agrees with the eye dr.. they too said that methotrexate can increase the side effects of prednisone...a decision is still being made..hopefully tomorrow...all drs are weighing what they think is best..they are actually conferencing over this..

Vicky..I have loudly said this to all doctors...I would think that would be my problem because it was so severe. It seems everyone is focused on the mtx/prednisone combo and can't hear me.

I respect and appreciate everyone's thoughts....it helps me when I speak to the doctors..and it makes me feel not so alone...I agree with you guys..I am just tired...
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009
Diagnosed with Crohn's March 2010- Mayo Confirmed May 2010
Methotrexate injection, Prednisone, Colestipol.Nexium, Propranolol, Vivelle patch

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 8/19/2010 4:06 PM (GMT -7)   
junerainbow which mayo clinic do you go to?

Yea, for sure prednisone can cause a huge increase in blood sugars. Things might go back to normal when you get off it. You can get blurry vision from high blood sugars.

Health insurance will look for any excuse not to pay for something, won't they? I've never heard of health insurance not paying for a meter or type 2 diabetes meds. That's ridiculous, especially if you are on prednisone. Also, some people get type 2 diabetes just because they are over the age of 40 and it runs in their family. I am sorry you have to go through this. It sounds like you've had a lot to deal with already.
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, high BP, fibromyalgia, Mixed Connective Tissue Disease
claritin, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, omeprazole for reflux.
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA.
Currently on flagyl and it is helping. Have apt with surgeon soon

junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 8/19/2010 4:31 PM (GMT -7)   
I go to the one in Rochester.

I thought I would have more answers today but I guess its too late now.. so tomorrow when I go for my shot.. I guess if the dr refuses to give it to me.. I will have my answer... I really think just continuing the taper would be a good idea..and leave the mtx alone.

thats my choice.
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
----------------------------------------------------------------------------------------------------------------
Diagnosed with Crohn's March 2010- Mayo Confirmed May 2010
Methotrexate injection, Prednisone, Colestipol.Nexium, Propranolol, Vivelle patch.
had to stop Imuran due to pancreatitis

jan2003
Regular Member


Date Joined Jul 2004
Total Posts : 92
   Posted 8/19/2010 4:46 PM (GMT -7)   

June,

Your latest plan sounds good to me.

Regarding the eyes, I guess I was confused when you said cloudy and swollen. What was cloudy/swollen? I thought eye issues in diabetes happened in the retinal area. I guess if your eye doc did the slit lamp test and didn't say anything about uveitis or iritis, and didn't prescribe anything for your eyes,  then you're probably ok there. I've had blurry vision while on prednisone, but that was totally different from the cloudiness I had with iritis.

Ok, so I just looked at WebMD and I see "High blood sugar causes the lens of the eye to swell, which changes your ability to see." http://diabetes.webmd.com/diabetes-blurred-vision

But also, "Diabetes causes problems in the retina with what are collectively called microvascular abnormalities. The small blood vessels develop microaneurysms and leak blood. New blood vessel growth (neovascularization) occurs. Unfortunately, these blood vessels are weak and also leak. These leaks (hemorrhages) can cause irreversible damage to the retina, with subsequent vision loss." (Sorry, this sounds pretty scarey. I hope yours is reversible since they caught it soon!)   http://www.allaboutvision.com/askdoc/diabetes.htm

Anyway, I hope you get some answers and solutions soon. Good luck!

Jan

 

Post Edited (jan2003) : 8/19/2010 5:49:26 PM (GMT-6)


junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 8/19/2010 7:18 PM (GMT -7)   
wow Jan.. thank you for all of that....that was very helpful...and thanks for just being there..

the mayo called back tonight...they truly think I just need to continue taper of prednisone and continue with mtx..just watching the side effects for now of the mtx...now its just a question of the gi being on board for now.. until I can make a change.
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
----------------------------------------------------------------------------------------------------------------
Diagnosed with Crohn's March 2010- Mayo Confirmed May 2010
Methotrexate injection, Prednisone, Colestipol.Nexium, Propranolol, Vivelle patch.
had to stop Imuran due to pancreatitis

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8375
   Posted 8/19/2010 7:23 PM (GMT -7)   
June, I know it is hard to argue with DRs sometimes, but if your GI is not "on board," then tell him what you want to do and insist on doing it that way. If he fires you as his patient, then you will clearly have to seek treatment elsewhere. But if he is just going to go along (grumpy or not), that would be ok. You are ultimately the one responsible for your decisions, not the GI.

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 8/19/2010 7:28 PM (GMT -7)   
June, I just read all of what you've been through, and just reading it exhausted me! You have every right to "complain" though I don't consider it complaining when you're in a questionable situation, and just need to bounce ideas off and get ideas back from people.

I lost my job over a year ago, and have had a lot do deal with, and I have periods where if one little thing is added to my pile, I'm bound to break. It's understandable with all you've been through that you're tired.

I hope that things start turning a corner for you, and you start moving uphill instead of adding more and more to your plate. It sounds like you're quite a strong woman to deal with all the medical, financial and emotional things in your life (not to mention 3 kids!!!!)
Becky

32 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D
Coumadin stopped 3/15/10!!!!

junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 8/23/2010 8:21 AM (GMT -7)   
Thank you all so much for your support and information.

One hour before the injection, the dr called me to cancel it. I was livid and told him there was no way I was canceling and that I want the shot. I told him I had spoken with the Mayo drs and they agreed to keep me on the injection but to taper down the prednisone. My dr was none to happy.
Got the injection and I have to go for blood sugar tests this week to make sure that I don't have a more serious problem going on. I felt really awful after this injection... I was so tired and nauseous, I felt like I had the flu, maybe it was the stress of everything. I slept through Sunday. But to add to the fun, I have spots all over my legs and have no idea what they are. I have another call into the Mayo. My vision is clearing up so I am grateful for that.

Anyway...thank you all again.
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
----------------------------------------------------------------------------------------------------------------
Diagnosed with Crohn's March 2010- Mayo Confirmed May 2010
Methotrexate injection, Prednisone, Colestipol.Nexium, Propranolol, Vivelle patch.
had to stop Imuran due to pancreatitis
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