Bummed

[Psyborg]

So I think I'm starting to flare again. Same stinking time every year. Really concerned as I have vacation scheduled in June, and it takes forever to get rtx done.

Pain in the hip every morning, fairly intense amount. If I sleep on the other side it's my shoulder instead. My only hope here is it's consistently the same spot so maybe it's nothing, but...
I added in Fatigue the last 4 days, and now I'm developing a bit of a cough and hoarseness.

I'm praying it's not a flare, but my brain it telling me all the warning flags have been unfurled. :)

[Dirty Don]

Hang tough Bob...it could or could not be...but be ready to get the drugs, don't try to get through it on your own...

[Pete]

Bob,

I agree with Don. Give Dr Villa Forte a call pronto. Maybe you can put this behind you before vacation.

Good luck and better health!

[drz]

I would get the routine lab work done pronto to help assess what is going on. I would also go see my Weg expert right away to get their assessment and what ever treatment they deem necessary. You should have two months to get things under control before your vacation and hope that is enough time to get it done. Best of luck for improvement soon. I seem to get Weg symptoms when ever I get an infection or maybe it's the other way around. Any other such warning signs for you that might help get things sorted out quickly?

[mishb]

Bob, you know the drill by now........get your bloods done, and then make the call.
I hope that it isn't........but you know you can beat it back down again.......you have done it before and can do it again.

You know, I can hear my mum yelling, as she is reading this ........yes, she is a regular lurker on here :flapper:
I can hear her saying, listen to your own advice for a change my dear daughter.......go and get your bloods done and make the call.
Yes, I am down to 3mg and the aches and pains are creeping back. Not terribly bad but still there.
Yes mum, they will be done sometime this week.

[Psyborg]

I do actually feel a bit better today. Less pain and grogginess might just be some delayed withdraw symptoms. I have blood work scheduled this week anyway, might do it a day early to see results before the weekend.

[Alysia]

Hi bob,
I hope the symptoms will stop. I hope it is not a flare. if it is, catch it asap and control it.
I know the feeling, when some symptoms returning, how alarming it is, and scary :scared:
Im afraid the symptom will last forever.
but it is not, thanks God.
(except from some symptoms that love me too much, they dont want to leave me, :sneaky:maybe they know I dont like separations... ).

[annekat]

I hope this is not a flare, Bob. When you say it always happens at this time of year, it makes me think of allergies.... however, that would not explain your hip pain or much of the increased fatigue. We will all hope for the best and that, if you are flaring, it will be easily brought under control.

[Psyborg]

So far every flare but one has been in April-May. Like clockwork...I suspect an allergy must be related to it, or my body reacting poorly to somehting in the environment at this time of the year.

[annekat]

I've been bugged by allergies a bit this year, too.... I think my meds keep them down a little. I kind of have to fend for myself on those, since my doc doesn't think I could be having any allergy symptoms with the immunosuppressants and pred that I'm on. I don't take his word for that. So far, not too unmanageable, but am not looking forward to grass season, my worst allergy.

[Dirty Don]

I agree Anne, though my docs say the same thing, I can feel the differences in allergy reactions and good old WG attacks on my sinuses...sniffles...

[KimH]

I hope this is not a flare but if it is :0( I hope you can knock it out before your vacation. I too flare the same time of year, in August. Hmmm. Be well and I hope tomorrow is even a better day for you.

[marylz]

Sorry to hear of this, Bob! Get thee to the dr. and check it out! Good luck. Where are you heading for vacation?

[rebekah]

I'm so sorry you're going through this! I really do hope it's not a flare and you get well soon, so you can enjoy the trip!

[Psyborg]

We are going to Disney World again...was my son's request. Taking my sister and her family along this time.

The way I feel I'm 90% sure it's a flare, but you never know. The fatigue makes me more certain than the pain to be honest. Left a message for the Doctor and getting my bloodwork tomorrow. On the bright side the insurance company approval is already done from last year.

[chrisTIn@]

The fatigue makes me more certain than the pain to be honest.

I can understand that.
I have severe shoulder pain again too, but since I'm not so tired, I think it's not a flare, in my case.

Good luck to you, I hope you will be able to go to Disney World with your family!

[Psyborg]

Well it's definitely a flare. Felt really bad yesterday which was good so I didn't minimize thngs when Dr Villa Forte called lol. So once again back to 20mg of Pred...hoping that with my regular Immuran might be sufficient, supposed to call back in 1 week if it doesn't. Of course I already feel a bit better since Prednisone kicks the inflamation down fast. Glad I got the bllodwork drawn before I started the Pred...kinda want to see if it was out of line.

[annekat]

Sorry to hear it's a flare.... sounds like the one I just got over.... also kicked back up to 20mg. pred and increased my MTX. I got good results and am now heading back to 10mg. pred. I hope you're able to see improvement soon and will be able to enjoy your trip to Disney World.

[Pete]

Good move, Bob. Sorry to learn it's a flare, but this is probably the quickest way to put it behind you so you can enjoy your vacation.

[Dirty Don]

Well, not the news you wanted Bob, but you jumped on it so you look like you're gonna get to go to Disney World! Good on you! Have fun now!

[HopeinTN]

I hope it gets under controll quick. I'm so scared that I will never know what a flare looks or feels like. I never had any symptoms before I ended up in the hospital with the severe lung pain, shortness of breathe and subsequent lobectomy. I'm ANCA negative and my CRP and SED rate stay increased. What else do I watch for?

[renidrag]

Sorry to hear this Bob, so frustrating. Good luck and get well. Say hey to Mickey for me.

I always seem to be infatuated with my Cratninean (s) levels for some reason. I think because I worry a lot about a flare in my Kidneys, which have not been affected as of yet.
I also share the fear of having a flare and not knowing it.
Dale, oops, time to change the avatar, now if I can remember how.

[annekat]

It took me a couple months to realize a flare was developing, because I'd had a cold and was attributing symptoms to that. When night sweats developed, followed by blood clots in nose, and increasing fatigue, I got a clue. So, it was a repeat of some of the symptoms that led to dx, but less severe. But I'd had lots of symptoms for years before dx, so can't say my WG came on suddenly like yours did, Hope (sorry, name is slipping me). I had lung involvement at dx but it didn't come back with the flare. So can't answer as to what you would look for, sorry... I hope someone can, and most of all I hope you don't flare.

[Barbara N]

Don is right. I keep avoiding the drugs because I was on them for so long and they never cured anything and I had such a bad reaction to them. I have a new doctor now and she is bringing me around, not back to the Pred. and things, but simple things like sleeping pills that really work and something for anxiety when I get in some tough situations. A good night sleep can make a big difference in how you handle the next day. Keeping stress at a minimum is also so important. The drugs are there so why not use them. I guess if you use them properly then they can really help. It is just that I was taking so many pills and felt like dying. Now, off most medication, except pain killers, I have been feeling so much better. It is just in the last few months that I have been hit hard by a series of new symptoms so I am having to rethink my philosophy. I will still take therapeutic riding over medication any day.

[Jaha]

Bob,

I'm sorry your flaring again, this **** never seems to end. I glad you were able to get Villa-Forte right on it. Now get well and have a wonderful vacation!

[Debbie C]

when I had my ct scan done and they found 4 new nodules (after being in remission for almost a year ) I sent the cd to my Dr. in Cleveland Clinic and he said he's not concerned about them cuz they are so small. I also had my blood work done and everything come back perfect except my sed rate was at 30...it's hasn't been over 20 since I've been in remission. But again he said not to worry. BUT here's anything thing that's been going on for the last couple of months..My nose and cheeks will get very cold(sometimes when I'm laying I pull the blanket up over my face to get warm,I was wondering if this is how sinus issues start with this..anyone else have this problem?

Dale..you may have allery thing happening with you also,it was on the news this is going to be one of the worst years for suffers. And maybe your just feeling aching from lowering the pred. Good luck on yr blood work this week and hope you feel better.

[Psyborg]

Well that first day of Pred is always deceptive :) No pain and minimal fatigue, but serious night sweats and the breathing still sucks. Hopefully it improves...can't say for sure I don't have a chest cold but I'm skeptical based on timing.

[drz]

Well it's definitely a flare. Felt really bad yesterday which was good so I didn't minimize thngs when Dr Villa Forte called lol. So once again back to 20mg of Pred...hoping that with my regular Immuran might be sufficient, supposed to call back in 1 week if it doesn't. Of course I already feel a bit better since Prednisone kicks the inflamation down fast. Glad I got the bllodwork drawn before I started the Pred...kinda want to see if it was out of line.

Did you get any results yet?

[drz]

Sorry to hear this Bob, so frustrating. Good luck and get well. Say hey to Mickey for me.

I always seem to be infatuated with my Cratninean (s) levels for some reason. I think because I worry a lot about a flare in my Kidneys, which have not been affected as of yet.
I also share the fear of having a flare and not knowing it.
Dale, oops, time to change the avatar, now if I can remember how.

My Weg specialist at Mayo said the best way to check for possible unfeeling Weg attack on kidneys is to use urine dip stick to test for blood in the urine. A bottle will last several weeks if you test once a week which I guess is often enough.

[Psyborg]

This seems like a dumb question, but can I be flaring if my bloodwork is normal? I felt HORRIBLE but I just got my lab work prior to restarting Prednisone and everything was in normal ranges...sed rate was just barely above what it has been. I really expected things to be out of whack, so now I'm starting to think I'm losing it. The last thing I wanted was to reboost the stupid Prednisone if it wasn't necessary.

[Alysia]

Hi Bob
my doc called my state "active" and not "flaring". my WG IS active when my blood tests are well: I have inflammations in nose, ears, joints and colon. and then my doc is telling me to take more pred. I even started rtx because of those inflammations and still my blood tests were well. except for C-anca which is higher when my WG is active.

[annekat]

My Weg specialist at Mayo said the best way to check for possible unfeeling Weg attack on kidneys is to use urine dip stick to test for blood in the urine. A bottle will last several weeks if you test once a week which I guess is often enough. I really need to do this. My doc doesn't do urine tests and only does blood tests every two months unless I might be flaring. I know you can get these dip stick tests at pharmacies but sometimes I don 't really have the cash flow, even though they aren't terribly expensive. My creatinine levels are always fine in my bloods, but you never know when Wegs might pull a fast one.

[annekat]

Hi Bob
my doc called my state "active" and not "flaring". my WG IS active when my blood tests are well: I have inflammations in nose, ears, joints and colon. and then my doc is telling me to take more pred. I even started rtx because of those inflammations and still my blood tests were well. except for C-anca which is higher when my WG is active. I'm starting to think the terms "active" and "flaring" are subjective terms depending on the doc's viewpoint and how he wants to define it, in the same way that "remission" and "limited Wegs" are not very definite terms and may be thrown around differently by different docs. It does seem strange that Bob would feel and seem like he is flaring, with the night sweats and all, when his blood tests are OK. I know I still have symptoms when my bloods are OK, because I'm not in remission, and I'm still capable of flaring. I was going along at that level, and then when night sweats returned and other symptoms increased, it showed up as a flare in my bloods. I hope Bob's good bloods mean that the flare is minor and will pass soon!

[Psyborg]

LOL Me too :)

[marta]

Hey Bob,

Just got on here because I've been feeling a little beat up myself. I was wondering what's going on, but I think that my issues are pred wean. I so know that feeling of wondering what the hell is making you feel like crapola... is it a cold, is it a flu, is it the wean, or is it a flare. My bloods look fantastic, yet I can't sleep, joints hurt, have zero energy... so I'm certain mine is pred wean, and certain drops hurt more and take longer to stabilize. I hope that yours is something similar or just a tiny smoulder. If your doc thinks that it can be taken care of with just an increase in pred and your already existing AZA regime, then you're golden. (It's all relative right, you're golden compared to having to go in for an infusion and blowing all your B-cells to smithereens.)

Your spirit is amazing , and I know you'll be out of this dip in no time and have a fantastic time with your family with Mickey Mouse. I think the uncertainty and the thought of possibly having to go back to square one is probably the hardest thing with dealing with our life long buddy Weggener. If you do have to go back to square one, you're a seasoned vet, so you'll have less trouble than others in getting through it, if not, you'll appreciate the situation despite the fact that you'll still be on meds. Funny how perspective changes with experience, and having gone through the ordeal once, changes our constitution for ever. I think for the better. But what do I know?

[Dirty Don]

I'm not sure, but I think it's Bob's fault...LOL...I, too, have been weaning from pred and this Saturday I experienced soreness in the left wrist, in the right ankle, palpitations, and hand sweats...thought: Oh no, here I go again. Nope, was an actual drug withdrawal from the weaning process as I have just recently stopped the alternation of doses and went completely to the lower dose. Am feeling fine now, no symptoms...just was being 'dramatic' and wife had to remind me of what I'm doing with the drugs...jeez! We can do this, dammit!

[annekat]

Weaning pred a little myself right now.... nothing much yet except the crappy nose, as usual! It really varies from day to day.

[Psyborg]

I'm not sure, but I think it's Bob's fault...LOL...I, too, have been weaning from pred and this Saturday I experienced soreness in the left wrist, in the right ankle, palpitations, and hand sweats...thought: Oh no, here I go again. Nope, was an actual drug withdrawal from the weaning process as I have just recently stopped the alternation of doses and went completely to the lower dose. Am feeling fine now, no symptoms...just was being 'dramatic' and wife had to remind me of what I'm doing with the drugs...jeez! We can do this, dammit!

I did it!!! ;)

I'm pretty sure it wasn't just a withdraw symptom, but who knows. The withdraw symptoms had been milder and seemed to completely disipate, I am feeling a bit bleary still. That might be the Prednisone though :)

[Psyborg]

Mini-rant :p
So, a couple weeks hence. I'm still pretty sure it's a flare. Or I've developed chronic fatigue syndrome lol. Sleeping (albiet poorly) a bunch. I've gone from 1mg of pred to 20, which nipped the pain issue in the bud. But still fatigued so up to 25...had one good day then right back to fatigue issues. I'm going to preemptively try 30 mg today I think to see. Mind you the Dr did tell me to do this.

And of course I'm neurotic again with the prednisone. I bumped up to 20...saw that my labs were fine then decided it was all in my head. Two days later I'm back to fatigued and call the doctor about it. No doubt driving the poor women nuts. She wanted to go to 30 mg, but I didn't...so she settled on 25 mg (which is why I'm going to try 30 now). Sleep rather poorly for 9-10 hours at night then drowsy all day...bleh. I wouldn't mind so much but the fatigue really impacts my work. Hard to think on my feet when I'm bleary. And that stupid vacation bearing down in me isn't making me any less nervous either lol.

[mishb]

This just sucks Bob :predrage:

I was certainly hoping that you had caught it quickly and that things were starting to come good for you.

Hurry up and catch up on your sleep will you.......so you can go and have an enjoyable holiday:hug2:

[annekat]

I'm sorry it's dragging on for you so, Bob. If the fatigue is the main remaining symptom, I guess it could be worse, but yes, that can seriously impact your life. I hope you'll feel more energized each day, little by little, so you don't have to get too far back into the pred again to where it's harder to wean from it.

[Rini]

I hope this is not a flare, Bob. When you say it always happens at this time of year, it makes me think of allergies.... however, that would not explain your hip pain or much of the increased fatigue. We will all hope for the best and that, if you are flaring, it will be easily brought under control.

. Hopefully with some stable weather it will clear up but i trust you are old hat at this and could probably lecture me more on what to do about my knees killing me

[Psyborg]

Day 3 at 30mg of prednisone and I think I'm finally feeling less fatigued. Crossing my fingers.

[annekat]

Day 3 at 30mg of prednisone and I think I'm finally feeling less fatigued. Crossing my fingers. Good to hear that, and I hope you can taper down before too long without losing that effect!

[drz]

Day 3 at 30mg of prednisone and I think I'm finally feeling less fatigued. Crossing my fingers.

Be sure and watch though so you don't get too hypomanic from the extra pred cause that can mess you up a lot too plus all the nice side effects that we all love about high doses of pred. Glad it is helping though with the pain.

[Psyborg]

Oh...I'm definitely doing the prednisone based mental/emotional weirdness. I'm sincerely hoping this nips it in the bud and I can start reducing in a few weeks again.

[Psyborg]

LOL I'm a train wreck, I swear. Start feeling better regarding fatigue, now I have a sinus cold/infection. Found a rash on my stomach yesterday....but it's an extremely small area. Like the size of a dime...and a smattering of little red dots that almost look like red freckles across my chest.

[annekat]

LOL I'm a train wreck, I swear. Start feeling better regarding fatigue, now I have a sinus cold/infection. Found a rash on my stomach yesterday....but it's an extremely small area. Like the size of a dime...and a smattering of little red dots that almost look like red freckles across my chest. Oh, darn it, Bob! You can't seem to get a break. I've gotten a few little red dots on my forearms when starting to flare. I hope in your case this is all related to your meds not being adjusted quite right! It's so complicated, though, you increase the pred and feel better, but that could make you more vulnerable to things like the cold. I hope it all resolves soon.

[pberggren1]

Oh **** Bob. I'm so sorry. I had those little red dots too for a couple days but they are gone today. Are you on an antibiotic for the sinus infection?

[mishb]

LOL I'm a train wreck, I swear. Start feeling better regarding fatigue, now I have a sinus cold/infection. Found a rash on my stomach yesterday....but it's an extremely small area. Like the size of a dime...and a smattering of little red dots that almost look like red freckles across my chest.


Bob, I am sure you have missed our standing order, somewhere along the line.

You are supposed to be getting better - not picking up more things :razz:

Take it easy and I hope things come good soon

[Debbie C]

Hey Bob ,I haven't been on here for a few days,been trying to enjoy this nice weather but I was thinking (since we are both from Ohio ) that maybe allergies have a big part to do with yr problem.Alot of pollen in the air.I've been having a tough time breathing but mine is because we have a musty, moldy damp basement and I was down there the other day for awhile. Hope you get to feeling better soon and can lower the preds again. I also get tho
se little red dots usually on my arms and legs but they seem to just come and go....I don't know what that means. Good Luck in feeling better soon !!

[drz]

Oh, darn it, Bob! You can't seem to get a break. I've gotten a few little red dots on my forearms when starting to flare. I hope in your case this is all related to your meds not being adjusted quite right! It's so complicated, though, you increase the pred and feel better, but that could make you more vulnerable to things like the cold. I hope it all resolves soon.

Unfortunately there seemed to be a lot of riders on that train. Hats off to all who are struggling now with symptoms or issues and best wishes and odes of joy to those who are getting a bit of break or reprieve from WEGS.

[annekat]

I also get those little red dots usually on my arms and legs but they seem to just come and go....I don't know what that means. I get very few of them, and not very often! I think they must mean something, that I'm a little run down, that the Wegs dog is trying to wake up, etc., but not necessarily that I'm actually entering a flare. Getting more rest and avoiding more stress can make them go away. However, having A LOT of those red dots, all at once, I think would be a red flag.

[Psyborg]

I'm getting forced rest...hopefully that works :) That stupid head cold went straight to my chest like my head colds always do. That was easier to deal with when my left Bronch wasn't damaged...hurts like crazy when I cough hard now.

On the bright side my head isn't congested anymore lol.

[Alysia]

Hi Bob,
if you put something hot (like "warm bag") on your chest, it aches less and the cough may stop for a while. also helps with cough - drops of Pilka.
I wish you quick recovery.

[annekat]

Bob, at least it is going predictably for you, you seem to know it is a typical head cold going to your chest and not something out of the ordinary. I hope it passes quickly and you can move on to planning your vacation!

[Psyborg]

Slowly kicking the cold, and the good news is my Wegs symptoms have appeared to all dry up. 30mg was the magic number I think.

I was supposed to go for a PFT on Wednesday, but I think given I'm coughing and hacking still it should be delayed. No way it comes out with anything scientific at this point. At least that would be my guess.

[mishb]

I'm glad you are starting to feel better.
.....just need to get rid of all that chesty muck now.
Probably the best idea to delay until things are clearer

[Marci]

Bob, Glad to hear the cold is improving. I'm still learning what things stand for around here so I'm curious what does PFT mean?

[Psyborg]

PFT is a pulmonary function test. Basically it measures how much air you can inhale and exhale. They sit you in a box and have your breath in and out through a tube. At this point that would render me to a coughing fit for sure :) It usually does to an extent even when I'm otherwise healthy. They pushed that appointment back to June for me so no worries there now.

[Marci]

Daaaaaaaaaaaaaa! If I would have thought about it, I could have figured that one out. Nope that wouldn't be a pleasant test if you are getting over a cold. Do you know how much Wegs you have in your lungs?

[Psyborg]

Mine is actually in the Left Bronch, so not technically in the lung. The Wegs destroyed all the cartilage around a section so my bronch collapses when it has negative pressure. Same issue in my Trachea but less of it, but with added stenosis there.

[annekat]

The only kind of PFT I've had is just a hand held device that they use right there with no additional box to sit you in. I always cough on the exhale, but haven't had one for awhile.

I'm glad you are getting over the cold and that your WG symptoms are drying up, Bob! I hope you can take your vacation at the scheduled time.

[annekat]

Mine is actually in the Left Bronch, so not technically in the lung. The Wegs destroyed all the cartilage around a section so my bronch collapses when it has negative pressure. Same issue in my Trachea but less of it, but with added stenosis there. That sounds awful. I hate the way WG just randomly destroys things. I hate to think what tissue of mine has been eroded or destroyed that I don't even know about specifically. So far, the bronchs seem OK, as far as I know.

[marylz]

Glad you are feeling better!

[RudiK]

I hope you get completely over that nasty cold soon and feel better.