Another Newbie Question

[Psyborg]

Hey all...I have a question. I've been on Prednisone since the middle of June and with the initial levels of Pred I was feeling nothing of my symptoms for the most part. With my specialist appointment last week I'm down to 30mg a day, which is still a pretty substantial dose as far as I can tell. But I've been feeling the effects of Wegs a lot more since I went from 35 to 30 mg, but I also started CTX the same day as well. I've honestly felt the worst I've felt since June the last few days....dizziness, knee and arm pain and some swelling, fatique, etc. And now my cough has decided to turn it up a notch again (feels like constant phlegm in the trachea aggravating it).

Is this just a fact of life of getting the Pred down? Or does the CTX lower the effectiveness of the Pred? I could call the doctor about it but figured I don't know if I'm just experiencing normal stuff here.

[Sangye]

I think the problem may be that they didn't start ctx before dropping the pred at all. The usual protocol: get high dose pred in for a few days to start controlling inflammation, and then start the main engine-- ctx or rtx-- to really get the Wegs under control. Then start to taper the pred.

The ctx doesn't lower the effectiveness of the pred but it certainly can make you feel lousy. It made me feel like death both times I was on it. I never understood how others would say they were getting stronger once they started treatment!

[Psyborg]

I did call the doctor, though I'm getting someone else in the department to call me back because she's on vacation. I just got worried because this feels like the run up to the last time I really felt bad. I'd really screwed up my Pred as well over time as at some point I misunderstood something and started taking it spread out over 3 times in the day, which the doctor apparently never ordered. But when the pain starts to come back after being gone a while and then the fatigue and the cough I have to admit that worried me. That and it's a bit worse each subsequent day though varying in intensity and migrating around the body.

[Sangye]

Yes, those are all symptoms that raise a red flag. I'm glad you called your doc.

At 30-35 mg pred, I don't think it would make a difference to split it into 3 doses. It's still a very high daily dose.

[jola57]

Psyborg, I too can't think of why they would wait so long before giving you ctx unless your doc eronously thought that pred alone will do the job. Is your doc a wegs specialist? I remember feeling achey forquite a while when I was misdiagnosed and given low dose pred only, but after being given ctx and high dose pred I was feeling much better in couple of weeks. It has been only a week since your ctx started so it may be that you just need a bit more time for both meds to do their miracle work. Unless the substitute doc knows your history well, he/she might not be able to fully assess you. Or you may be lucky and he/she has better knowledge of wegs. Good luck

[jola57]

As far as I know the studies showed no change in efficiency of pred when split into 2 or 3 doses only a slight blip better when in one dose.

[Psyborg]

My family doctor started me at 90mg a day so 30 feel low now ;) Rheumy had a small cow when he saw that and started me decreasing, but way too fast, 10MG a week. I got down to 20mg a day and started having issues. It was somewhere in the decrease that I started splitting the dosage up. Went back up to 25, then 35 and started to recover but now at 30 I'm having issues.

[Psyborg]

Psyborg, I too can't think of why they would wait so long before giving you ctx unless your doc eronously thought that pred alone will do the job. Is your doc a wegs specialist? I remember feeling achey forquite a while when I was misdiagnosed and given low dose pred only, but after being given ctx and high dose pred I was feeling much better in couple of weeks. It has been only a week since your ctx started so it may be that you just need a bit more time for both meds to do their miracle work. Unless the substitute doc knows your history well, he/she might not be able to fully assess you. Or you may be lucky and he/she has better knowledge of wegs. Good luck

I basically only was officially dx'ed last week with going to the CC to a specialist. Prior to that I was the worlds biggest mystery and the Rheumy kind of ignored the elevated ANCA because he thought WG always had lung nodules and my chest CT was clean. I don't hold that against him really as he was very nice and immediately suggested the CC when I found the fact that other symptoms were possible (In my case the TS).

So I just finally started getting adequate care. I might just be lucky that Pred was working so good by itself perhaps.

[Sangye]

Boy, my memory just stinks lately.... Thanks for reminding me why you were only on pred before ctx. Yes, I would say you were very lucky that the pred was working so well. Thank goodness you got to CC. They'll know what to do--either have you bump up the pred temporarily to cover while the ctx kicks in, or just wait it out and let the ctx start to work.

[Psyborg]

I think for my work that is the hardest part of this so far. My memory (which wasn't fantastic in the first place :p) is pretty much shot right now. I'm a programmer and I've always had a pretty good ability to work through logic issues, but my mind won't work quite the same as it used to lately. And then I add on the Prednisone and rather than thinking things through I'm mad about them. LOL

[jola57]

Ha Ha Ha, you are talking to a gal that put sugar in the microwave and looked around for a full day. Pred and ctx does a number on our brains, in my work I rely on my memeory a lot too, in property management everyone has a problem that calls in an I have to remember, who, what , where, what time, then coordinate repairs etc, etc... I have an iPhone, and it is my saviour for appointments and for jotting down notes. Mind you it does not save me when I am talking to a client and forget the names of everyday things such as " well and how is your ummm...., you know the thing that you had a problem with?" I can tell you it is embarrasing, tee he he he. LOL

[elephant]

Psyborg, glad you called CC. YOu are in good hands. They will be on top of it. I too called them last week. :)

[Psyborg]

The doctor said to bump back up to 40 mg and see if I feel better today. Bummer :( So the pain is less today, but once again I'm up at 3:30 am with leg cramps back. I'm supposed to call back tomorrow and Friday and let him know how I'm feeling. Starting to get that Groundhog Day thing from the movie thread going :D

[elephant]

Psyborg, I know how your feeling when I was on prednisone anything above 20 mg would cause insomia...I think I averaged 2 hours a night and then had to take a nap. They probably increased the prednisone to decrease the inflammation. You are in good hands. Least they want you to call back, and make sure you are feeling ok. You will be out of this " Groundhog Day soon.

[Sangye]

Psyborg, the higher pred is just temporary until the ctx can start working. I know it's no consolation at 3:30 am, but sometimes it helps ease the concern that it's going to be like this forever. Hang in there. Do your best to rest during the day-- even little breaks are good.

Magnesium and potassium will help with the leg cramps. :)

[misskay]

Saw my Rhumy this morning... cytoxan up to 150mg a day, but bumping the Pred down to 40 starting tomoorw. Started at 80mg, dropped it too fast the first time and had to bump back up. This time we're taking it slower. he said if I have any pain symptoms return to immed bump back to 50mg (been there for 2 weeks now) and call him and let him know. Blood work is all right where he thought it would be at this point, urine looks good.

We also have an ENT on the "Team" now. LOve, Love, Love her... young, only been out of school a few years, but as soon as she saw WG on the chart, she started working everything up. Baseline hearing, scoped the sinuses, checked throat... she seems really on the ball with WG and told me things to look out for, pay attention to and things I needed to call her about asap if they occured. Good news is, no sinus involvement related to WG, just major sinus infection (causing blood,pain, etc). Put me on Nasacort, seems to be helping. Already noticed marked decrease in blood and pressure.

We talked about the fatigue (he told me to be patient, it's going to be a while before I feeel like 'me' again), and the Vasculitis in the fingers. Have developed sores on 2 fingers and both thumbs. Right now THAT'S what is bothering me the most. VERY painful...

Psyborg, my Rhumy gave me Lunesta to help me sleep while we're doing high dose Pred. Works wonders for me. I actually get 5-6 hrs of sleep at a time now :) As soon as we get the Pred down to low dose, we'll see if we can do without it... but for now it's making a huge difference. For me anyway.

[Sangye]

Misskay, have I nagged you this week to get a VF doc consulting on your case? I've lost track.... :D

The vasculitic sores on your fingers must be awful. I had vasculitic leg ulcers--excruciating. Must be so much worse on sensitive fingers!

[JanW]

glad you've got a good ENT on the case misskay -- gotta watch those sinus infections, WG involvement can often 'masquerade' as those, even to people who are very skilled clinicians. My doc says there's very specific kind of redness and swelling he looks for -- different from allergies, colds, etc.

[misskay]

Sangye, not yet this week.... lol

The fingers are horrible. Hard to do anything at all. Have to type with my 'birdy' fingers. (affecting both thumbs and index fingers and poss starting in left big toe). Even caring for myself (showers, dressing, eating) have become difficult and at times too painful to do. Doc said as the Cytoxan works and the Pred lowers it may help... right now we are just trying to keep them from becoming infected. On the good side, my chest tube holes are looking better. Less red, less oozy... :)

JanW, thanks, I will ask her about that. Make sure we're all on the same page. Best part is all my docs (Rhumy, ENT and Pulmy) are all sending all notes from tests, bloodwork and appts to each other, so everyone has the same info and ALL the info. Can't get anything accomplished if the right hand doesn't know what the left hand is doing.

[jola57]

So good to have docs that you trust and like. I had two sores on my hands, thumb and middle finger (go fugure) they looked like these big bumps and hurt like he%@, the smaller one went away but the bigger on my thumb is still there although it is painless. Those are good levels of meds to be to get back on track, it was the same for me. It took me 4 years, but now I can safetly say that I am in very good form. So good luck you are well on your way to being better. Adjust the pred as you need to get rid of the pain but just know that in between changes some pain is ineveitable but should go away in a week.

[elephant]

Misskay, so glad you are getting some sleep. What did the ENT lady say to watch out for? Just curious...I have sinus involvement right now.

[JanW]

Yes, it's crucial that they should be passing notes back and forth that reflect what they see at every visit and the treatment plan as appropriate. Whomever your quarterback is (rheumy, neph, etc.), he should have all of these notes and blood work in one file. My ENT will take my self report on blood values, but receives treatment plan notes from my rheumy.

[misskay]

elephant, I've had horrible allergies and sinus problems ever since moving to east Tennessee 20 years ago, and she said that anything that feels the slightest bit 'different' from my normal or if I have more blood than normal, different colored mucus, or start to feel the least bit 'not normal' or (more) run-down... to call her asap. Also if I get any eye pain. I go back every 6 months for a re-check of hearing and sinuses unless I have a problem, then asap. Also if there are any sudden changes in blood work-up we may need a re-check to see if there is anything happening we need to address. She will be getting copies of all weekly bloodwork now just like the rest of the 'team'.

She told me if I get any more of the needle-stabbing pain in nose after we get this infection cleared to call her immediately for a re-check. She looked at the CT I had done in the hospital just before diagnosis, and said it showed swelling and inflammation, but nothing excessive. When she scoped the sinuses she saw inflammation, redness and a small amount of crusting. Gave me a neti pot to use twice a day and a recipe for the solution to make at home and put me on Nasacort (yet another darn steroid). It seems to be working wonders. Sinuses are doing MUCH better.

[Psyborg]

Psyborg, the higher pred is just temporary until the ctx can start working. I know it's no consolation at 3:30 am, but sometimes it helps ease the concern that it's going to be like this forever. Hang in there. Do your best to rest during the day-- even little breaks are good.

Magnesium and potassium will help with the leg cramps. :)

Got some potassium to try. Ended up taking a nap this afternoon and that helped a bit. I wish I knew if the weird grogginess was related to medication or the disease. Just not sure...starts as pressure behind the eyes and feels just "fuzzy" in the head.

On the bright side 40mg removed all but the stiffness in one knee again. Wrists, elbows, and knee pain are reduced.

[Psyborg]

Saw my Rhumy this morning... cytoxan up to 150mg a day, but bumping the Pred down to 40 starting tomoorw. Started at 80mg, dropped it too fast the first time and had to bump back up. This time we're taking it slower. he said if I have any pain symptoms return to immed bump back to 50mg (been there for 2 weeks now) and call him and let him know. Blood work is all right where he thought it would be at this point, urine looks good.

We also have an ENT on the "Team" now. LOve, Love, Love her... young, only been out of school a few years, but as soon as she saw WG on the chart, she started working everything up. Baseline hearing, scoped the sinuses, checked throat... she seems really on the ball with WG and told me things to look out for, pay attention to and things I needed to call her about asap if they occured. Good news is, no sinus involvement related to WG, just major sinus infection (causing blood,pain, etc). Put me on Nasacort, seems to be helping. Already noticed marked decrease in blood and pressure.

We talked about the fatigue (he told me to be patient, it's going to be a while before I feeel like 'me' again), and the Vasculitis in the fingers. Have developed sores on 2 fingers and both thumbs. Right now THAT'S what is bothering me the most. VERY painful...

Psyborg, my Rhumy gave me Lunesta to help me sleep while we're doing high dose Pred. Works wonders for me. I actually get 5-6 hrs of sleep at a time now :) As soon as we get the Pred down to low dose, we'll see if we can do without it... but for now it's making a huge difference. For me anyway.

Sounds like we are on the same amount of the same drugs right now. THough you are a few weeks ahead of me :)

[DEE]

Psyborg i still take 100mg cxt and 22,5mg preds and still find i need a daytime sleep sometimes
i used to worry about it but not any more i know its my body saying ENOUGH and go with the flow had three hours sleep early pm today :)
Keep your chin up things will look a little more clear soon as we have so much to learn about this dieases .
take one day at a time small steps try not to worry about the what if s just deal with now was one of the first pieces of advice i took onboard from this forum it helped
take care DEEx

[Psyborg]

Biggest problem is when I am at work. At home I'm happy to take a nap, but when I'm at work it's not an option I'd be able to take. Starting to think that working from home may have to be my option due to this.

[DEE]

i know its hard but if its an option for a while i would give it a try i didnt when first dxt but sure wish i had now wo
worth thinking about DEEx my bedtime now take care talk again soon night !

[elephant]

Listen to your body and rest! I still take a nap almost everyday. I look forward to it.

[Sangye]

Psyborg, did you get a potassium supplement? It's best to eat foods that are high in potassium instead of using supplements. You can easily take too much and have heart issues. Bananas, OJ and potatoes are good sources but you can do a quick online search to find others you like.

[brocky99]

I am on 25mg of pred and 125mg of ctx and i have had an hours sleep everyday for the last few months or so. the weirdest thing i find is if i dont sleep in afternoon i am awake all night then a few days later i am totally wiped out so i generally make myself have an hours sleep every afternoon.

[Psyborg]

Psyborg, did you get a potassium supplement? It's best to eat foods that are high in potassium instead of using supplements. You can easily take too much and have heart issues. Bananas, OJ and potatoes are good sources but you can do a quick online search to find others you like.

I did...but I'll look towards the food instead. My biggest problem is getting in the food because I'm so tired of bananas :) I'm thinking that based on what I've experienced the last week that I am just going to have to suggest they have me work from home. I'd love to work at the office a few days a week, but I think that I need that afternoon nap. In the end they'll get more time from me if I work from home probably anyway :)

[Psyborg]

I am on 25mg of pred and 125mg of ctx and i have had an hours sleep everyday for the last few months or so. the weirdest thing i find is if i dont sleep in afternoon i am awake all night then a few days later i am totally wiped out so i generally make myself have an hours sleep every afternoon.

That's interesting as that seems to be my experience as well. If I take a nap I sleep better at night. Seems a bit weird, I haven't taken naps regularly since I was a toddler to be honest. If the sun was up I generally was..