New member - Tired of trying

Hi Gail,
Sorry your feeling so down. I do remember pred being such an evil drug.
i would never let my GI doctor put me back on that drug. I am sending
you much needed hugs. I wish there was something that I could do
for you.

teddybearweiser

Just fyi guys, this post is for a new member, not me:)

 

  sorry, I don't see any sunshine. my husband can't even stand to look at me.

  at this point i don't want to communicate with my spouse! he has not been there for me the whole time,no support whatsoever,he won't even try to talk to me.

he has never been a talking man,won't even answer what you ask him.

he thinks that if you don't discuss problems they will go away.i don't know why i married him in the first place except that maybe i felt sorry for him.

he leaves all the responsibility of running a home to me while he does nothing but sit in front of the tv.

honestly,he is absolutely no help tp me.

now when i need someone to be there, to talk to me,i have noone.

i wish i had somewhere to go to be alone through this horrible disease,but i don't.

i have 2 kids that are so busy with thier lives they don't even have time to visit me.

so, to make a long story short,i am just plain miserable,all the side effects from the prednisone are much worse on me than the disease.i have hot flashes so bad that i have to walk around holding an ice pack all the time!

fast heartbeat       irritability,,,,,mood swings    depression    facial swelling (back of neck and abdomen too}

bruising  skin thinning    urinary frequency and pain all the time   constipation       stomach irritation

wt gain     tremendous appetite,(i never get full)   crave sweets all the time   extreme tiredness all the time

trouble sleeping,I have sleep apnea and i'n up every day at 3:30- 4:0'clock  

I have never felt worse in my life!

I woll try to find a place to dig a hole a stay in it!

 

 

dear susmom,

 no, i don't have anyboby that has the time to listen,believe me i have thought of that,just anybody!

i have always been a person that  needs to talk it out when i have a problem but i have no one. i feel like i am just dying inside.

they have had me on a roller coaster ride with this disease since feb.16th of this year. i went in for routine blood work and was told to go directly to the emergency room because my sed rate was so high. (122)  they thought i had spinal mengitis.  after 3 days of running tests in the hospital they decided it was temporal areritis. sent me home to go back to my  regular dr. to follow up for a temporal  bx.

saw the surgeon,he said no, you do not have temporal areritis! saw my eye dr. the next couple of weeks,she said no, you do not have temporal areritis, saw my allergy dr. he said,no you do not have temporal areritis,and treated me for a sinus infection.

2 months later i go back to see my regular dr. for iv reclast,he comes in and says,your sed rate is very high again,i want you to see a rheumotoligist ,but i'm going to go ahead and start you back on high dose prednisone.

had to wait 5 weeks to see the rheumotologist and he says, you have temporal areritis and polymyalgia rheumatica! he says we need to stay on high dose prednisone for at least a year.

so you see,i have been through so much and with each visit to the dr. i have been so worried and upset and not understanding what is going on! one dr. tells me  this and one dr. tells me that.

i'm to the point that i don't believe or trust any of them.

i know that i just can't drop the prednisone suddenly but i want to.i was much better off before i took the first one.it is destroying me!

Tired of trying -

First - I know how horrible pred can be. If you are having horrible side effects, maybe you can switch to budesonide or one of the other drugs... Also it can take time for meds to actually start helping. But first, you need to find a doctor you can talk to and trust. I don't know where you are located, but can you switch doctors? (After you get a good recommendation from someone naturally :)

Looonnng story. Also very graphic. Read at your own risk!

The saga of the 99 days... This was back in 1981, when the only test for IBD was the colonoscopy. I had just gotten married in Nov of 1980, honeymooned in Cancun and started a new job. Lots of stress, even if it was all good stress. I started with the big D on Jan 16, went to my GP, and he prescribed ampecillin. The big D continued for 2 weeks. I lost 15 pounds in those 2 weeks, and hemorrhaged on Jan. 30 - copious amounts of blood, passed out against the washing machine outside the bathroom. I woke up and yelled to my husband who was sleeping on the top floor of our split level (I was on the bottom floor). Luckily he heard me, called the ambulance. I got over 30 units of blood, had an exploratory. They never did find the source of the bleeding.

It took 3 colonoscopies before they decided it might be Crohns. I was in ICU for 7 weeks, during which time I had another surgery where they took out some suspicious small intestine, which tested disease free. After my incision started draining yucky green stuff, they opened up my entire 12 inch Horizontal incision (which looks like a huge smile now), inserted drains, and let it heal from the inside out. By this time I was on TPN and huge amounts of solumedrol (IV pred). Healing was problematic because I had lost so much weight - down to 115 lbs (5'8"). I developed 2 fistulas, one of which healed on its own as the insides filled in. The other one rose to the top. They never did find the location of the bleeding, which has occured twice since then. I have had most every test you can imagine, including nuclear medicine, trying to catch the bleed when it happens. My first GI told me I have the sword of Damocles hanging over my head with the disease and my being prone to bleeds. Thanks guy!

When I was close to being healed from the inside out, they moved me to a regular room, where I stayed another 6 weeks waiting for the 2nd fistula to heal. Still on TPN. The 3rd surgery was to fix the fistula, and I got out a week later, very bloated from all the pred, etc. I think I weighed 160 lbs by then. My weight has been screwed up every since. I blame prednisone. Now I wish I could see 160 pounds again - lol!

I was lucky. My husband was wonderful, and is still wonderful. Not that we haven't had our problems, it is alot of stress dealing with this disease. But he has literally stuck by me thru thick and thin - haha.

So that's my 99 day saga. You can understand why I counted the days :)

Sudsmom

tired of trying

I am giving you a big cyber hug, friend. We CDers here know how pred can affect a person. It can be very devastating.

I think the pred is exasperating your depression or even causing it and you need to see a doc asap. Maybe they can try to ween you off quicker and get you on something else, or even give you something to counteract your anguish. I urge you to talk to a doctor who will hear your concerns about your depression.

Hang in there. I want you to know that you won't feel like this forever. Once you get on the lower doses or off pred, the moon face disappears and so do the mixed emotions. It will get better soon.

Also, a counsellor might be a good idea, to talk to about your hubby. Ask for some positive suggestions and advice.
Chances are, your hubby has his own issues why he doesn't feel confident enough to comfort you, so the counsellor and ppl like us can lift you up with encouraging words.

If you are a praying person or believe in God, you can try calling some prayer lines, or go to church and talk to someone there. That person could be a big help too.

Stay strong. I wish you the best.

now I'm crying so hard, how did all this terrible stuff happen to me? I broke my left hip in 2006 and had to have a hip replacement,from the operating room i was told that i had sleep apnea. as soon as i could walk i had a sleep study done and was put on c-pap which didn't work for me. after 15 months of trying to use it and no sleep,i had the horrible surgery)UPPP) that didn't work either except to give me horrible pain in healing. so now i am back on the c-pap machine and still having a horrible time getting any sleep at all. 2-3 hours a night if i'm lucky.
in the meantime i developed severe allergies and have to take medication morning and night and go for allergy shots twice a week!
I have also developed osteoporis and thyroid disease.
all this has happened so fast, it's not even real to me.
now the prednisone is destroying what body i have left!!

I just need to cry i guess and try to let it out.

I agree with others - it sounds like you need to get weaned off pred, maybe try Entocort or some of the other drugs out there. If you can't talk to your current GI, find another one - look on-line, talk to your primary care doc, wherever you can get a recommendation.

Depression is a well known side effect from pred. Yes the disease is awful all by itself, but the pred aggravates your emotions. I was in a major depression from 1992 to 1995 and that was with an anti-depressant and talk therapy! In my case it was pain that put me over the top (along with having 2 young children). Just too much to take care of..

You are sounding desperate, so please don't give up. Call a hotline if you need to.

Sudsmom

I am so sorry that you're in so much trouble and depression. I think your depressive moods now is due to prednisone. I have a friend that is diagnosed with the same disease as you, and she was so depressed while on prednisone. She had a terrible headache re the temporalis arthritis, and could not sleep at night, just a few hours each night.

I told her about LDN, and she went to her doctor and got a prescription. This medicine in combination with her lower dose of prednisone, she used 20.0 mg pred when she started using LDN, have helped her a LOT.

Her terrible headache was gone the first night when she used LDN for the first time. Low Dose Naltrexone is a medicine that is unknown for most doctors, as it is a compounded from Naltrexone which is used for something different. But it's a legal, prescription medicine, and your doctor should prescribe it to you if he really wants to help you.

Your doctor need papers to read on LDN, and the best place where you can go to find good information on it is at:

www.ldnscience.org


Hope this could help you too. Numerous of people have been helped by using Low Dose Naltrexone. This medicine is regulating the immune defence by increasing endorphins. Endorphins are needed to heal all diseases.

I just got off of pred. after only a few weeks on it. I was only on 40 mg and dropped the dose by 5 every two days. The last four or five days, I was miserable. I was irritable,depressed and couldn't sleep well. I think you need to see a doctor soon even if it is your general practitioner so that he/she is aware how much the pred. is affecting you. The pred. works to quickly alleviate inflammation in a crisis but the side effects are so nasty!