Is it too soon to tell?

**NikkiNicole** · 03-25-2013, 10:21 AM

I cut back to 40mg prednisone yesterday per my doctors instructions. I felt terrible yesterday. It felt like I had been run over by a bus. And today, it's worse. I can't walk far without feeling like Im going to drop, I'm coughing, my ears are full of sooooooo much pressure (ears were my first symptoms last year), my head is killing me (pressure in the front). I don't know if this is just my WG getting worse in general or ... is it because of the 20mg drop in meds?
For those new to me, I can't start Cytoxan til I am done with radiation for a cancer tumor (unrelated but discovered while trying to diagnose me). I am only on prednisone at the moment. I guess there had been some improvement while on 60mg because I could get around the house OK. Now, it's like I am still in the diagnosis phase. I'm weak, dizzy, the room spins, I get winded walking to the bathroom (I have a lung nodule), my nose hurts, I got a bloody nose yesterday, my face hurts, I'm miserable!!!!

Also, what I've noticed since all this started, I can't take drinks of water in succession without choking. It makes me feel like my swallowing is messed up. This has never been the case. I used to be able to throw back a whole 17 ounce bottle of water now, I take 2-3 swallows in a row and find myself coughing and choking. Has anyone else experienced this? This all started in the last few months.

It feels like it's too soon to feel a difference in the prednisone dose but ... I hate this. I wish I could stop radiation and deal with the WG. I am scared it will progress. I drink 110 ounces of water a day, I pee a lot .... but I worry about something in my kidneys going south. I feel like I am not in control, the WG is still in control. I hate it.

**Tom** · 03-25-2013, 10:55 AM

Originally Posted by NikkiNicole

I cut back to 40mg prednisone yesterday per my doctors instructions. I felt terrible yesterday. It felt like I had been run over by a bus. And today, it's worse. I can't walk far without feeling like Im going to drop, I'm coughing, my ears are full of sooooooo much pressure (ears were my first symptoms last year), my head is killing me (pressure in the front). I don't know if this is just my WG getting worse in general or ... is it because of the 20mg drop in meds?
For those new to me, I can't start Cytoxan til I am done with radiation for a cancer tumor (unrelated but discovered while trying to diagnose me). I am only on prednisone at the moment. I guess there had been some improvement while on 60mg because I could get around the house OK. Now, it's like I am still in the diagnosis phase. I'm weak, dizzy, the room spins, I get winded walking to the bathroom (I have a lung nodule), my nose hurts, I got a bloody nose yesterday, my face hurts, I'm miserable!!!!

Also, what I've noticed since all this started, I can't take drinks of water in succession without choking. It makes me feel like my swallowing is messed up. This has never been the case. I used to be able to throw back a whole 17 ounce bottle of water now, I take 2-3 swallows in a row and find myself coughing and choking. Has anyone else experienced this? This all started in the last few months.

It feels like it's too soon to feel a difference in the prednisone dose but ... I hate this. I wish I could stop radiation and deal with the WG. I am scared it will progress. I drink 110 ounces of water a day, I pee a lot .... but I worry about something in my kidneys going south. I feel like I am not in control, the WG is still in control. I hate it.

Hang in there. Ive been down the Radiation and chemo path but I started my Wegs journey about 3 months before I was dx'd I was out 5 years on the cancer but of course follow up to keep tabs on recovery goes for 5 years. Where are you getting the radiation. If its the abdomen might be why your feeling crappy.I ve had the nodule on the lung (non cancerous). I have a feeling that when the lung nodule is dealt with you will feel a little better we hope.The feeling of being run down is probably normal but tell your Dr and dont let it go and bring it up at each appointment if you have to. I spent 5 years after my cancer surgery with complaints that all led up to the Wegs dx. I wasnt so fortunate as to get under control until my lungs were destroyed and the kidneys took a hit. Good luck.

**Dirty Don** · 03-25-2013, 10:55 AM

Seems most likely that the severe drop (1/3) in pred would cause much of what you describe. Many on here have described similar reactions upon passing the threshold of effective pred dosage. Also, since you are being radiated (don't know your dose level) there will be some similar reactions to that for some patients. And, since you are not receiving a drug for squashing the WG, it may be progressing...really hard to tell unless you get numbers soon. Being in control is something we don't really have with WGs...all we can is all we can do...the disease simply goes dormant...and waits...sighs...

**annekat** · 03-25-2013, 11:18 AM

I don't remember how long you were on the 60 mg. pred. It seems like a big drop to me. I don't know why he couldn't compromise and let you go to 50mg. first. But I'm not sure I understand why he cut back on it at all since you have WG and it is all you can take right now for it. Maybe in a few days, you will get over the withdrawal symptoms, IF that is what they are. True, you have a lot of things going on, like the radiation, which I know nothing about. How much longer for that, and until you can start the CTX?

**NikkiNicole** · 03-25-2013, 04:30 PM

I have three more weeks of radiation. Then, I should be starting the CTX right away. I was only at 60mg of prednisone for two weeks. It seemed awfully fast for me. Going down to 40mg, I feel as if I never started it. It's as bad as it was before, if not a little worse. It's going after my ears again. (I had tubes put in at the end of August last year). My left ear went muffled for about 20 minutes earlier today. Then, after it seemed to level out again, my right ear started ringing. There is so much pressure in my head in my sinuses. My radiation is hitting my left submandibular salivary gland area which is right under the jaw on the left. I contribute all throat soreness and current mouth problems to that. There's bad fatigue after each radiation treatment but ... it's pretty easy to tell when I'm just wiped out versus the debilitating malaise and run down feeling before I started taking Prenisone.
I was wondering if there would be a significant withdrawal from such a crazy drop.
I don't want to get any worse. I'm lucky to have caught things fairly early. I don't want to beat around the bush and then have major troubles.
Thanks for the info. This place really is the best.

**annekat** · 03-25-2013, 05:26 PM

Well, from what I think I know about pred, being on 60 only two weeks it wouldn't be quite as bad dropping to 40 than if you'd been on it, say, 2 months. But what you're feeling might not be so much withdrawal from the drug as the fact that you really need it now to control your inflammation and symptoms, since you don't have CTX to do that yet, and they are just coming right back! I understand your feeling that you barely got started on it before it's being taken away. I don't see the reasoning for tapering at all when it's barely had time to work. Seems like you are just undoing whatever benefits it was providing! I would talk to the prescribing doc about this if you can, and try to persuade him to let you go back to the 60. Two weeks is really not that long to be on it. I think I was on 60 at least a month, maybe two, before starting to taper, and that was with taking CTX at the same time! If he won't let you go back to 60, I'd find another doc with another opinion. This would be a reason for you to hook up with a true WG specialist ASAP. Such a doc would understand your reasons for having to wait on the CTX and would know how to manage the pred in the meantime. Even when you get the CTX, I'm not sure they'd want you tapering the pred yet! But what do I know? That's just my gut reaction.

**Psyborg** · 03-26-2013, 12:03 AM

I agree, thats a pretty steep taper, especially if that's your only medication for Wegs right now. I can't remember if you have a specialist, I know my previous Rheumy was all gung ho to get me off prednisone, before anything was controlled.

**Alysia** · 03-26-2013, 12:33 AM

Hi Nikki,
maybe you should listen to your body...
if the radiations are not contra-indication to pred, maybe you should take back the 60mg and see if it helps. In my experience, you can feel its influence in couple of hours, something between 5 to 10 hours.
I wonder how much time it takes for others here ... ?
not once docs told me to take less pred then I felt is needed. I didnt listen to them but to my body.
my lungs doc ordered me to taper pred from 60 mg when I felt it was too early, so I waited another week. couple of ENT docs ordered me to take less pred then I finnaly took, because as long as my ears were full of fluid and aching and not hearing, I continued to take pred untill it was over. the same with my gastro doc (there is a question about colon involvement).
maybe I did wrong. maybe not.
I will be glad to hear about others here experience about that.
In my first years with WG I didnt take any immunosupressive meds. only pred and sulfa. maybe it was a mistake. maybe not.
you can ask about getting sulfa, it helps.
at the begining, pred saved my life, only it.
I hope, this way or another, you will start feeling better.
sending you

**Dirty Don** · 03-26-2013, 02:40 AM

You know...my docs were never anxious to get me OFF pred...they did initiate tapering, but it's been a slow, and therefore, painless process for me. Most of my reactions were when I was on high doses. Anyway, it was always checking the numbers and how did 'I' feel at the time...they made their judgements based on BOTH aspects...not from a book. At my age, the pred would have to work overtime to do serious damage anyway...I do understand the 'need' to get off at a younger age though...just don't rush it...get better first.