Help !!!!

[Debbie C]

I don't know if this is normal or not. I had to go to the e.r last night because my abdomen is killing me. They did blood work and concluded that the prednisone is eating away my esphogus and stomach. So today it was time I started that long awaited taper on my pred, I only took 4 -1 mg instead of the 5mg and I feel so strange like I am going thru withdrawal. My insides are like shaky and I just feel weird. Is this normal for the first day or should I pop another one to get me back to normal. I go see a gastrologist in the morning.:w00t:

[pberggren1]

Wow, that is odd you are shaky like that but I would bet it is nerves due to your esophogus issue. How can they tell that just from blood work? Is he not going to do a scope?

[Debbie C]

That's what I was wondering,but that is what I deal with when I go to the e.r. They are guessing. I called up to the Cleveland Clinic and since my reumy is still out, Dr. Villa-Forte is supposed to call me back,but she was going to do that last week when I had a question and never did. I'm glad I see a gastrologist tomorrow unless I go to a different hosp before the night is over. I just noticed I have a red sore on the inside of my mouth now and feel real hot and clamy. Surely reducing 1 mg couldn't do this in a matter of hours :confused1:

[pberggren1]

I doubt going from 5 to 4 would cause you to feel like that so fast.

I'm sure the gastro doc will want to do a scope to see what is going on. Do you not take Nexium Deb?

[gilders]

I had a discussion on here a month or so ago about pred being prescribed gastroresistant/enteric coated predominately in UK, but not US. I can't remember if you said either way?
Maybe the coated pred could be best for you? I'm guessing you take something like omeprazole to help protect your stomach/intestines. If not, that could be another idea.

[Debbie C]

I was taking prilesec but he switched it to Protonix last night. I have never seen pred coated like that here,I'll have to find out.But I have to stay away from pizza, spagetti, anything good !
I'm just wondering why I have this sore in my mouth... I used to get them when I was not in remission. Still waiting for the doc to call me.

[annekat]

Sorry to hear of these difficulties you are having, Deb, and wish I could help, but the above advice is probably as good as any. I hope you get with some docs soon who can help you figure it out!

[pberggren1]

I've had sores in my mouth recently as well......hmm. And prilosec is omeprazole so that is king there.

[debhaz22]

Oh Deb, I'm so sorry! I was hoping your stomach issues had improved! Any call back yet from Villa-Forte?

[Debbie C]

Well the dr called me back and said she doubts that 5 mg. of pred would damage my stomach or esphogus yet I've had other drs. tell me that it would. She also said going down 1 mg should not have caused a problem and that I must have something else going on or that I may be having a flare and keep her posted if any thing else happens.And to go back to 5 mg.
I have tkts to go see Trace Adkins doing his Christmas concert tomorrow and then I have to try to get Elton John tkts on Fri. so I can't be sick now.
Deb..I hope you find out something positive tomorrow. Sounds like that dr. took too much of your nose for a biopsy for it to still be bleeding and hurting like that for a week.Let me know what you find out,hope it turns out it's not wg.

[pberggren1]

Your doc is right that a switch from 5 to 4 would not do much at all. She is also right that 5mg would not do damage to the stomach or esophagus while you are taking prilosec. But if one is not taking those meds then 5mg of pred can cause damage to those areas.

[Dirty Don]

Well the dr called me back and said she doubts that 5 mg. of pred would damage my stomach or esphogus yet I've had other drs. tell me that it would. She also said going down 1 mg should not have caused a problem and that I must have something else going on or that I may be having a flare and keep her posted if any thing else happens.And to go back to 5 mg.

When I flared in Sept, my stomach was my main problem as it turned out. PCP did give me some great stomach pills (promethazine) for what he didn't know what was going on. I did well on the pills as long as they lasted which was about 8 hrs at a time...then back to 'ill' feeling stomach. Turned out going back on pred at a mere 3 mgs ended the sour stomach. Right now, I may be adding more mgs as am going thru a very tired and lethargic period...only way out is pred so I can turbo boost back into activity! Sheesh!

[Alysia]

Hi Debra,
I am sorry that you have to deal with all this.
as for going down from 5mg to 4mg: I am trying to do it for months (lasted now again 1 week !), and each time I got down I had symptoms but differnet then yours: I had joints pains, ears pains, blood in my nose (I almost done with bloody nose thanks for the rtx !) etc. these are wg-symptoms. are your symptoms wg-related or others ?
as for losec/ omperdaex and others: I was told that being on pred 5mg is not demanding that I take omperadex. so I don't. that only above 10mg I should take it.
now I am a bit worried. is there a need to take it at every dose of pred ?
as for your stomach: maybe you caught some virus, and it goes with the sore in the mouth ?
I hope things will become better for you. those concerts that are waiting for you are too good not to go to !
I send you my love and my praying, take care. :hug2:

[annekat]

Alysia, I'm at about 8-9mg. pred and don't routinely take anything for my stomach. In fact, never have, and get by with over the counter versions of the acid blockers. But everyone is different! If I get a really sour stomach for any reason, a little baking soda in water works for me! I would listen to your doc if you are not having any issues with this.

[Barbara N]

I don't know if this is normal or not. I had to go to the e.r last night because my abdomen is killing me. They did blood work and concluded that the prednisone is eating away my esphogus and stomach. So today it was time I started that long awaited taper on my pred, I only took 4 -1 mg instead of the 5mg and I feel so strange like I am going thru withdrawal. My insides are like shaky and I just feel weird. Is this normal for the first day or should I pop another one to get me back to normal. I go see a gastrologist in the morning.:w00t:

I woke up this morning with exactly the same symptoms. It feels like I have acid burning my insides my bladder is like a large bloated square. Today is the day I am supposed to be collecting my urine to see the output but at this rate I think I willl need several bright orange jugs. They have not been able to get this under control for about 6 months now. It doesn't really feel like an infection but I know it is one. They also thought I had a chest infection but it turned out I didin't it was a noduloe, so I was re scanned and re tested and sure enough it is a noduloe. So ,what help or information can anyone give me about noduloes?Tomorrow I take in alll of my urine and give blood again and see what the kidney doctor says.

[Pete]

When I flared in Sept, my stomach was my main problem as it turned out. PCP did give me some great stomach pills (promethazine) for what he didn't know what was going on. I did well on the pills as long as they lasted which was about 8 hrs at a time...then back to 'ill' feeling stomach. Turned out going back on pred at a mere 3 mgs ended the sour stomach. Right now, I may be adding more mgs as am going thru a very tired and lethargic period...only way out is pred so I can turbo boost back into activity! Sheesh!

You and I may be taking the same approach to pred. I'm thinking that a small dose that keeps me asymptomatic is better than having odd symptoms while being off pred altogether. Good luck!

[Dirty Don]

You and I may be taking the same approach to pred. I'm thinking that a small dose that keeps me asymptomatic is better than having odd symptoms while being off pred altogether. Good luck!

Yep, I'm not surprised Pete! I feel it's better to feel better with an incurable situation than to sit and grinch and whine and act tough...take what's necessary to feel better as a cure isn't in the works yet. Go OSU over FSU!!!! I don't like Urban very much, but he's brought a program back to its prominence!! Hmmm, does this fit into WG categories?

[Pete]

Go OSU over FSU!!!! I don't like Urban very much, but he's brought a program back to its prominence!! Hmmm, does this fit into WG categories?

It does for me!! Lol

[marta]

Sorry you're going through this Debra. What a nutty rollercoaster ride. I agree that the Omeprazole should take care of any acid issues you might have from the pred, but I also think like your doc that 5mg of pred shouldn't be giving you any stomach problems that you would get at the higher doses.

I do however think that going from 5 to 4mg of pred can wreak havoc on the body. Not necessarily in one day but I had the hardest time in my drop in that area. This is because our bodies make between 7 and 9 mg of corticosteroids daily. We can live on less, but it is about 5mg that it becomes almost impossible to function and this is the time when the body is 'shocked' into waking up the adrenal glands to start functioning after their hiatus. I was heading back to work and had to call it quits again when I was dropping between about 5.5 and 4 and that took a long time at .5mg at a time.

I don't know if you were around when Sangye was more active on this forum but she had a terrible time in the low doses and flared a couple of times trying to get down. She was dropping by .25mg often to try and avoid setting things off. I'm following in her footsteps in that regard and am dropping very slowly by .25 mg (I'm not cutting them in quarters but am cutting the 1mg in halves and alternating to make the math add up to the right amount) A very good Weggie friend told me the other day that 1.75mg (which is what I was on a week ago - I'm at 1.5mg for the last five days but took an extra .5mg today because I was feeling super wiped) is nothing and that my body doesn't even know it. I really respect her opinion and tried to go down, but upon thinking about it, I am going to go back to my own program. I'm doing it according to feel and 1.75mg is 22% of what our body makes daily so it is a significant amount. It's nothing compared to the 60mg we all start at, but at real human levels it's a pretty big chunk of our corticosteroids we need daily.

So I think you should follow your gut. You can always go back up to the dose you just took if you can't get a hold of your doc and have a conversation about this. That will never hurt you. It can give you some time to assess the situation and start again. And I think some doctors are very aggressive with the pred wean and don't consider the fact that too fast can flare you.... and it's not them that will have to start the pred wean from scratch again, so it's no skin off their backs. We on the other hand want nothing to do with starting over from scratch and working down over months and even years - at least I don't.

So if you feel crappy, I would only change one variable at a time if you really want to pinpoint the problem. If you change a bunch of things you'll never know what caused any change in situation.

Just my two cents.

Hope you feel better soon and they figure out what's causing your tummy troubles.

[Dirty Don]

Another 2 cents: pred at low doses doesn't really appear to be the problem other than it is low dose. But, as I see it, the low dose pred with a sour stomach or any other weird reaction is too low. Pred simply reduces inflammation which in turn makes us feel a bit better, but it doesn't kill the inflammation...so as we lower, some of us, we tread upon a 'border of flaring' for each of us that simply says, "don't go there for too long...it doesn't feel good". I know, medically, that is nonsense, but it is a 'feeling' or gut reaction that we need to listen to well and often. Sometimes nonsense needs to be heard, not necessarily followed. Also, each of our metabolisms (wd?) operate differently. I, for one, have a body extremely receptive to drugs...why? I don't know...but I take them well, react to them efficiently...but, in turn, am also affected quickly by their lack of effectiveness. That has been determined by me and many docs administering drugs to me...ya shoulda seen me on Propofol!!!!!! LMAO! Anyways, I digress as usual. So, yes, low doses pack their own problems for each of us...right now, like Marta, I am wiped lately...and I'd take more pred if I thought it wasn't a bit preliminary to jump up the dosage at this point...waiting for doc to call...sipping coffee...talking with y'all...my friends and cohorts in a lovely situation...

[pberggren1]

I am doing 5mg every other day and seems to be working okay. I will prob just quit it in about 4 weeks or so. But now I want summer back.....:scared:

[marta]

Another 2 cents: pred at low doses doesn't really appear to be the problem other than it is low dose. But, as I see it, the low dose pred with a sour stomach or any other weird reaction is too low. Pred simply reduces inflammation which in turn makes us feel a bit better, but it doesn't kill the inflammation...so as we lower, some of us, we tread upon a 'border of flaring' for each of us that simply says, "don't go there for too long...it doesn't feel good". I know, medically, that is nonsense, but it is a 'feeling' or gut reaction that we need to listen to well and often. Sometimes nonsense needs to be heard, not necessarily followed. Also, each of our metabolisms (wd?) operate differently. I, for one, have a body extremely receptive to drugs...why? I don't know...but I take them well, react to them efficiently...but, in turn, am also affected quickly by their lack of effectiveness. That has been determined by me and many docs administering drugs to me...ya shoulda seen me on Propofol!!!!!! LMAO! Anyways, I digress as usual. So, yes, low doses pack their own problems for each of us...right now, like Marta, I am wiped lately...and I'd take more pred if I thought it wasn't a bit preliminary to jump up the dosage at this point...waiting for doc to call...sipping coffee...talking with y'all...my friends and cohorts in a lovely situation...

Hey Buddy,

Sorry you're feeling crapola.... I just have to clear something up because I tend to want to say so much that I end up saying nothing....

At low doses, the pred is doing nothing for our inflammation, but it's keeping us from going into adrenal crisis because our adrenal glands aren't producing what we need to function in terms of corticosteroids. I know my dad was weaned too quickly and he was sicker than anytime I've ever seen him in my life. He ended up not listening to his doc's wean regime and decided to follow Dr. Marta's (that's what he calls me now - ha ha) but here's the more medical explanation: Acute adrenal crisis: MedlinePlus Medical Encyclopedia (http://www.nlm.nih.gov/medlineplus/ency/article/000357.htm) This is why we need to be careful with the wean... especially if we've been on it for a long time because our adrenals are especially sleepy in those cases.

If I remember Sangye's advice, avoid coffee to get the energy boosted up because it actually drains what little steroid we do have going through our veins. But don't quote me because I'm not remembering like I use to - ha ha ha, you can all relate to that.

Peace y'all. Lots of love from the land of minus a thousand, right Phil?

[Debbie C]

I went to go see a gastrologist today and he thinks it may be may gall bladder. I have to have an endoscopy done Fri. morn. ( right when the tkts. for Elton John go on sale ) Tonight is the Trace Adkins concert I really wanted to go to but I'm too sick so I just gave them away ( and they where really good seats too ! ) So now besides being sick, I'm sad that I keep missing all these things I want to do.I'm sitting here crying because it seems my life is just passing me by and I can't seem to do anything anymore except to go to drs. who don't know crap. I have to go get my monthy bloodwork done tommorrow and see whats up.I think I may be having a flare. I keep feeling hot but I don't have a temp.,maybe it's everything going on in my gut. I still have the sore in my mouth but today I went back to 5 mg and wasn't shaky.

Sorry I'm ranting again ( I seem to do that alot lately ) I need to start thinking more positive since there are so many more people alot worse off then me amd if I don't start coming to grips with things I could end up being one of those people.

Thanks ya'll AGAIN for listening.:crying:

[rebekah]

Oh, Debra, I'm sorry to hear this. I just asked how you were doing in my post. I was hoping you were improving after seeing your doctors. Hope you can get things under control soon and you enjoy the concerts.

[rebekah]

Whoops, would've been good if I went on to read pages 2 and 3... must be the pred brain. I'm sorry to hear you weren't up to going to the concert tonight. I hope the test Friday goes well, maybe you can have a friend or family member get the ticket for you and pay them back? I also hope your blood work comes back okay and you're not flaring. I'm sorry you're having to deal with all of this right now, but I hope you get answers soon and are feeling back to your normal self in no time.

[annekat]

Deb, I'm sorry you are feeling crappy and missed the concert, but I'm glad you took the opportunity to rant! I hope things get better very soon.

[pberggren1]

Marta is dead on about the steroids. She saved her Dad's life.

Yes Marta, lately is does feel like minus one thousand.....:thumbdn:

[windchime]

Aw Debra you know this is THE place to rant so rant away. What are friends for. :biggrin1: Sorry you had to miss the concert. Here is hoping your blood tests come out good on Friday. Take care.

[Alysia]

Hi Debra.
I am sorry, and sending you lots of hugs :hug1::hug2::hug1::hug2:
there will be other concerts. and you will be ok.
they will check you and take care of the problem and you will be "like new". (this is what we say in hebrew to mean that you will feel very good).
please update us.

[drz]

I went to go see a gastrologist today and he thinks it may be may gall bladder. I have to have an endoscopy done Fri. morn. ( right when the tkts. for Elton John go on sale ) Tonight is the Trace Adkins concert I really wanted to go to but I'm too sick so I just gave them away ( and they where really good seats too ! ) So now besides being sick, I'm sad that I keep missing all these things I want to do.I'm sitting here crying because it seems my life is just passing me by and I can't seem to do anything anymore except to go to drs. who don't know crap. I have to go get my monthy bloodwork done tommorrow and see whats up.I think I may be having a flare. I keep feeling hot but I don't have a temp.,maybe it's everything going on in my gut. I still have the sore in my mouth but today I went back to 5 mg and wasn't shaky.

Sorry I'm ranting again ( I seem to do that alot lately ) I need to start thinking more positive since there are so many more people alot worse off then me amd if I don't start coming to grips with things I could end up being one of those people.

Thanks ya'll AGAIN for listening.:crying:

I made the same observation to several people recently when they ask how I am doing after 3 1/2 years after Wegs diagnosis. I too am on 5 mg pred and 175 aza maintenance which seems to maintain my drug induced remission with some fluctuations in residual symptoms which often seem extreme to me, especially when I get an infection that requires an antibiotic. I often make plans which turn out to be more of a wish or hope list since sometimes or frequently they need changing. Usually this means I feel too tired to do them or concerned it will be too much for me and create an reaction that will require a lot of rest so maybe it is not worth it. I think I have become much better at gauging my "spoon inventory" and how to manage my allocation of "spoons" so I can usually make the activities that are highest priority. Sometimes though I long for old pre Weg days when my calendar could have five or ten times more activity without much apparent problem, but I think I do enjoy many of the things I now can do much more than before. I enjoyed a great concert last night but in the past I would have attended many more in this month but now will only attend a couple.

[Debbie C]

I had my endoscopy done yesterday..and the dr. said again that my meds are giving me gastritsis. I know have to take carafate 4 times a day along with protonix 1 time a day. When they were prepping for the the surgery they listen to my lungs and the nurse said my left lung sounded deminished:sad:that it just wasn't getting enough air as my other one.I mentioned that my chest had been bothering me for awile but my cardio dr. said I had anxiety and my pulmy said to take deep breathes and relax.I don't know what happened during the procedure but afterwards when the dr. came to talk to me ,he ask about my breathing and I told him what my pulmy said, he was pretty pissed off and said he was going to call and have a word with him.I also got my blood work back and everything was good there but my urine shoud a trace of blood,protein,leukocyte and postive for nitrite. I'm hoping I just have a uti but I take my mother to our kidney dr. on Monday so I'll have hime look at it,also my dr. in Cleveland should be back so I'll call him. I swear if it's not one thing it's another.

[debhaz22]

So sorry Deb. :( Did you ever hear back from Villa-Forte?

[windchime]

Aw Debra sorry you're going through a rough patch. Praying that this too shall pass. Keep your chin up.

[Alysia]

oh, Debra, I am sorry :sad:
at least that doc was responsible.
the stomach issue can be handled by omperdaex, I believe. also try light nutrition, nothing with oil or sugar or too much spicy.
did you do urine culture ? it can tell if it is uti.
I hope you will soon have the answers and treatment to take care of all this.
I am sending you lots of hugs and my love and praying. please update us.
:hug2: :hug2: :hug2:

[Pete]

Maybe a stern doc to doc conversation will get you the full attention you deserve from your pulmy!

[annekat]

Strange when a pulmy is lackadaisical about one's breathing issues. I've had my pulmy be that way, too.

[Debbie C]

I guess since he is one of the best in town and has alot of patients,you become just a number like most other drs.I think it's time I find another who I can see when I need to and not have to wait 2 months for an appt.

[Jaha]

Deb,

Sorry to hear your having such problems. The stomach issue could also be related to what is going on in your lungs. When all this started with me I had bad stomach pains and had to have a bunch of test ran. Maybe when you go see CC they can get you in with a pulmy up there. That's where I go to see one. Good luck to you, hope everything improves soon. Sorry you missed you concert, this crap really sucks most of the time.