Feel like it is all falling apart - frankly I'm scared.

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Date Joined Nov 2003
Total Posts : 7121
   Posted 5/8/2010 8:57 PM (GMT -7)   
Yesterday I saw my rheumatologist. I had an echocardiogram last month and a battery of blood work because I was short of breath and generally feeling worse than normal. Turns out that I have pulmonary artery hypertension [PAH] and some worsening blood indicators. PAH is NOT a good thing to have.  According to my rheumy, the ankylosing spondylitis has affected my heart. [PAH can eventually lead to heart failure.] It is a rare complication. I also have developed lupus antibodies again and PAH is a rare complication of that disease. My red blood cells have been low since I went on Imuran 6 years ago. However, they red blood count is too low for me to continue on Imuran. So I stopped it as of this AM. Not sure how the GI will react to this news. I'm having a colonoscopy Wednesday so will brief him then.
Two weeks ago I saw my neurologist to assess my neuropathy. [The nerves in my feet and legs died from years of untreated Crohn's.] I have ataxia now - basically the lack of nerves is effecting my muscles thus effecting my coordination when I walk. It isn't always bad but some days are worse than others. The physical therapist is going to evaluate me and my home to recommend what is needed to keep me from falling on my rump again.
I am worried on several fronts. The Simponi, an anti-TNF, has helped me greatly with my AS. However, if I get lupus AGAIN, I'll be off that. Will my gut inflammation return since I have stopped the Imuran? How bad is the PAH going to get and how soon? Sorry for feeling so down but I just needed to get this out. I am feeling sorry for myself - I'll be the first to admit that.
May we all get relief from our health issues....................... :-)
Moderator Crohn's Disease  & Osteoarthritis Forums
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, asthma, severe allergy and a host of other medical problems.

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Date Joined Dec 2005
Total Posts : 1768
   Posted 5/8/2010 10:10 PM (GMT -7)   
Awww, Ides,

Sounds like you have a lot going on. I think I would be overwhelmed myself. If you had all of this going on and didn't have days where you felt sorry for yourself I'd probably think you were a bit crazy...or just really medicated and sedated. It's completely understandable. We all have bad times where it seems like it's one thing after another, and we all need to vent and have people understand.

Just wondering, but do all anti-TNF meds work the same? I know humira and remicade are used for other conditions, so would the one you're on for AS help Crohn's, or were you on that then your GI added the Imuran? Also, are there other CD meds you haven't tried yet?

I know it's a lot to think about, but maybe your GI will have a plan of action to make sure the inflammation won't return. I hope he/she does!

I also hope things on the other fronts calm down a bit. Having one disease to deal with is enough, let alone multiple ones.

((HUGS)) to you, and I hope things settle down for you.

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!!!!

Veteran Member

Date Joined Dec 2009
Total Posts : 681
   Posted 5/8/2010 11:23 PM (GMT -7)   
Ides I'm so sorry to hear what you are going through! This DD can really be a trial. I'm not even sure what to say except you'll have a special spot in my prayers! Rob
Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.

Elite Member

Date Joined Jan 2005
Total Posts : 24909
   Posted 5/9/2010 6:35 AM (GMT -7)   
AWWW Ides my friend i hv the bleeding neuropathy going on too n it absolutely is hades
its also in my feet n lower legs n hands
hv had it since seizure n went totally deaf
im so sorry all this is going on with you
i wish i was more help just know im here k
..Co Moderator for Crohns........Alzheimers.....Anxiety/Panic

DX..Crohns,,,A/P...Fibro...Seizures..Neuropathy...Pyoderma Gangrenosum..Deaf

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Veteran Member

Date Joined May 2003
Total Posts : 9448
   Posted 5/9/2010 7:13 AM (GMT -7)   
(((hugs))), Ides. I'm so sorry to hear of all you are going thru. If anyone so doesn't deserve to be put thru so much, it is you. God must really love you. He never gives you more than you can bear.
My computer says I need to upgrade my brain to be compatible with its new software.

Julia Hill
Veteran Member

Date Joined Mar 2008
Total Posts : 560
   Posted 5/9/2010 7:45 AM (GMT -7)   

You have enough going on for 10 people. (((hugs))) What about MTX? I know it helps crohn's and lupus, just a thought.

Take care,

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 5/9/2010 7:51 AM (GMT -7)   
((((IDES)))) Sending healing prayers and peace your way. Hope they can find the right meds to treat all these new issues. And never hesitate to vent to us, we love you and are always here for you.

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"*

Veteran Member

Date Joined Jan 2007
Total Posts : 3200
   Posted 5/9/2010 8:14 AM (GMT -7)   
(((((Ides))))) I'm thinking of you. xx

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...

Forum Moderator

Date Joined Jan 2004
Total Posts : 3384
   Posted 5/9/2010 8:21 AM (GMT -7)   
((((Ides)))) I'm sorry you have so much to deal with. Vent away, that is what we are here for.

Thoughts and prayers are with you,
Jon,  Co-moderator for Crohn's Disease, Depression, & Celiac Disease forums
"The man who insists upon seeing with perfect clearness before he decides, never decides. Accept life, and you must accept regret." -- Henri-Frédéric Amiel (1821-81), Swiss philosopher, poet 
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Regular Member

Date Joined Apr 2010
Total Posts : 232
   Posted 5/9/2010 11:14 AM (GMT -7)   
My thoughts are with you too ((((Ides))))

Remicade doesn't go well with heart issues, as that was my reaction to it, so I can't take it.

I will add to the suggestion/option list Low Dose Natrexone, it's use for treatment of many auto immune diseases, including MS, lupus and neuropathy (a three-fer???).

It does not suppress the immune system, in fact it modulates it. Side effects are minimal, but it cannot be mixed with opiates or immune suppressants.

Post Edited By Moderator (MMMNAVY) : 5/9/2010 9:07:15 PM (GMT-6)

Veteran Member

Date Joined Nov 2007
Total Posts : 4366
   Posted 5/9/2010 1:11 PM (GMT -7)   
I don't have any suggestions, just don't stop asking questions from your docs. sending big hugs your way!
51 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 4 500mg pills per day, Metamucil and colace for constipation, probiotics

Veteran Member

Date Joined Jan 2005
Total Posts : 1825
   Posted 5/9/2010 1:21 PM (GMT -7)   
Aw Ides..............I don't have any answers & I'm not an expert but I do know there are meds out there to manage PAH. I used to work for Accredo and we had a whole team dedicated to insurance & billing for PAH drugs. Did your dr. mention treatment? If not, please pursue information. Sorry I don't have any more info, but I'm sending big hugs your way.

Veteran Member

Date Joined May 2007
Total Posts : 1284
   Posted 5/9/2010 1:24 PM (GMT -7)   
Man, Ides... :(... You can't catch a break... *Hugs* I think you're entitled to feel a little sorry for yourself... All those health problems must really suck... I'm sorry you're suffering so much... :(
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.

Veteran Member

Date Joined Apr 2005
Total Posts : 3763
   Posted 5/9/2010 2:36 PM (GMT -7)   
Ides, I'm so sorry life has been hitting you so hard right now. I do hope you can catch a break soon. Please never feel bad about coming and venting that's what we are here for, lord knows you have done your share of picking us all up when we have hit rock bottom, let us return the favor. (((((HUGS)))))

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.....

Regular Member

Date Joined Mar 2010
Total Posts : 105
   Posted 5/9/2010 3:13 PM (GMT -7)   
Ides, so sorry you are having to go through all of this.  Hope you get to feeling better soon!
Diagnosed w/ Crohn's 2010
Diagnosed w/Hemicrania Continua (variation of migraine disorder)fall 2009
Current meds: Pentasa, prednisone taper, Prilosec, zonisamide

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