CellCept and Bronchitis?

[NikkiNicole]

Hi Guys!!
So I started prednisone after I saw my rheumy and got back on CellCept. Four pills a day! Anyway, the prednisone is a devil drug but it is also my hero. Sinuses and joint pain vanished.
Except,... Now there's this.
OnWednesday I could barely swallow. It felt like there was a spiked ball in my throat that caught on fire and wiggled when I tried to swallow. Yesterday, I felt generally off. My nose burned a little. Then my throat felt gunky and I kept coughing. I had taken the day off because I had to have a toenail removed (ouch) so I came home and vegged. Last night felt weird ...
Today my chest hurts, I'm coughing up thick clumpy yellow mucous, my nose is running and my throat hurts mainly from coughing.
My chest hurts BAD when I cough. My stomach now hurts too. I'm not coughing that much but when I do ... Whoooo boy!!
I'm thinking its just a run o the mill cold. I don't think a week on CellCept would make me immunosuppressed enough to have caught something bad.
Trying to decide if I take tomorrow off or if I'll be good to go to work.
Anyone else deal with bad colds on CellCept??

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[Birdie]

Anyone else deal with bad colds on CellCept?

Have not taken CellCept but I'm oh-so familiar with what you described.

For me those symptoms have started off exactly as you described and I went downhill fast, ending up in the hospital seven times with difficult respiratory infections. After a year of that I figured out how to work the medical system and got my PCP to believe and quickly act on what I said was wrong (instead of waiting for cultures to develop).

The problem was not so much a problem once I started getting antibiotics within a day of symptoms.

Gary

[NikkiNicole]

I'm feeling just so tight in my chest. I'm not coughing anything up now but I'm still coughing.

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[Alysia]

I doubt that it is a reaction to the cellcept. I think its too early to have any from it. it still can be wg flaring and/or flu and/or throat/lung infection because the pred makes you more immune compromised. cant you see any doc, to check you ? even ER to see your blood tests ? maybe cxr ? hang in there and take good care of yourself.

[annekat]

It sounds like what I had when my lungs got bad right before diagnosis. I may not have coughed up as much stuff, but what I did had bits of blood in it. It hurt to cough, for sure, more in the lungs than in the throat. Sometimes I coughed so hard I was afraid of cracking a rib. Sometimes I'd feel a pleural rub, sort of a crunchy feeling as the layers of the outer lung rubbed against each other. I also had a lot of sinus involvement, but had been dealing with that for a couple of years, having not been dx'ed or treated. Anyway, hard to say if this could be bronchitis or some other kind of infection as opposed to a Wegs flare. I would get it checked out.

[NikkiNicole]

I had been to the doctor and did antibiotics. Of course now ... I still feel awful. I'm still all full of phlegm. It's mostly in my throat and sinuses. I cough still and it hurts in my back down on the lower right side of my ribcage near my spine. I'm also terribly terribly terribly dizzy ALL the time. I can't turn my head, I can't walk around a corner, I can't be the passenger in a car, looking at my phone bothers me, the computer screens at work. I am dizzy non stop ... which means then I get nauseous from all the spinning and I've had non stop weird headaches. I've just felt weirder than I ever have since getting over the initial bronchitis stuff.
Not sure what I am supposed to do. I emailed the doctor but I doubt that will go anywhere.

[Birdie]

I had been to the doctor and did antibiotics. Of course now ... I still feel awful. I'm still all full of phlegm. It's mostly in my throat and sinuses. I cough still and it hurts in my back down on the lower right side of my ribcage near my spine. I'm also terribly terribly terribly dizzy ALL the time. I can't turn my head, I can't walk around a corner, I can't be the passenger in a car, looking at my phone bothers me, the computer screens at work. I am dizzy non stop ... which means then I get nauseous from all the spinning and I've had non stop weird headaches. I've just felt weirder than I ever have since getting over the initial bronchitis stuff. Not sure what I am supposed to do. I emailed the doctor but I doubt that will go anywhere.

In your condition I went to the emergency room... seven times in six months. Can't be certain if you're as bad or worse than I was, but it sounds ohhhh-sooooo similar.

The seventh time, when once again the ER doctor started off in what was clearly the wrong direction, I got mean & nasty with him. Well as mean and nasty as my personality will allow, which wasn't that mean and nasty with a 105 degree fever and O2 in the 70's. O2 that low and your brain doesn't work so well. Could barely even talk, passed out in the ER many times.

Anyway, it took seven trips and seven admissions in the hospital to get their attention and make them find the problem. Infections, lots of infections, more infections than they could identify before starting to treat them. Infections they failed to find on the first six admissions. It took a very dedicated infection doc to even know how to find them.

So don't be afraid to get help even if it means going to the ER, like right now, cause this has been going on far too long for you take it anymore.

[whatthewhat]

that sounds awful. Dizzy to that degree would worry me, and I would think of taking my weggie to the e.r….


I had been to the doctor and did antibiotics. Of course now ... I still feel awful. I'm still all full of phlegm. It's mostly in my throat and sinuses. I cough still and it hurts in my back down on the lower right side of my ribcage near my spine. I'm also terribly terribly terribly dizzy ALL the time. I can't turn my head, I can't walk around a corner, I can't be the passenger in a car, looking at my phone bothers me, the computer screens at work. I am dizzy non stop ... which means then I get nauseous from all the spinning and I've had non stop weird headaches. I've just felt weirder than I ever have since getting over the initial bronchitis stuff.
Not sure what I am supposed to do. I emailed the doctor but I doubt that will go anywhere.

[annekat]

The dizziness is miserable, especially if it becomes real vertigo, which since you said you were nauseous, sounds at least close to it. It could be all the inflammation in your ears making that happen. I've experienced vertigo several times since having WG, including before dx. There is more than one possible cause, but it usually involves the inner ear losing its ability to regulate your sense of balance. I'm far from being able to give any scientific explanations, but I do know some things that help and hinder dealing with it. Too much caffeine and chocolate will trigger it if you are predisposed to it, as will alcohol. When I have an episode, I may have to stop drinking coffee at all for a few days. Black tea is OK, for me. The drug meclizine, in some versions of Dramamine, will prevent a full-on attack if you feel dizziness coming on; I take 50mg. in that case, and another 50mg. later if it doesn't improve, and if I'm suddenly hit with vertigo, I'll take 100mg, which is more than they say to take, but what works for me. It can make you sleepy, but doesn't me, so much. As for nausea, the drug ondansetron (Zofran) will help that a lot. My ENT wrote me a prescription for Lorazepam, saying it worked better than meclizine, and I tried it, but didn't like it much. It made me too groggy. Haven't tried it in a full-on attack, though, and it might be fine if you just want to sleep, anyway. Good luck, I hope the dizziness passes and doesn't come back. As for your other symptoms and stuff, I tend to agree with the others here and on another thread, that you should see a better WG specialist such as Dr. Chung in SF, and that you should go to the ER a little more often, when things get that bad. Having a crappy infection and Wegs at the same time is a crappy combination.

[NikkiNicole]

I get so damn tired of how they treat me in the ER. It's really upsetting and I find myself wanting to unhook myself and leave. I have near constant heart palpitations (yet the EKG is ALWAYS normal so it must be in my head). I am dizzy and feel like I am going to pass out but my O2 was 95 so clearly I must be faking it. Now, today, I just sort of feel like I've taken sleeping pills and am in that state before we drop off. There's pain behind my left eye that intensifies when I tilt my head forward.
Basically, I hate everything about everything right now.
I have an apt on Tuesday to talk with one of my GPs colleagues about the dizziness. My rheumy thinks it's completely unrelated.
In a nutshell ... I just hate it all. I feel like keeping my complaints to myself and pretending there is absolutely nothing amiss. If I go into the ER half dead, maybe then they'll pay attention.

[Birdie]

If I go into the ER half dead, maybe then they'll pay attention.

LOL... Don't make any bets on that one. They pump you up with drugs until you can communicate, ask how you're feeling, and send you home high as hell. It wears off quick. Don't give up. That's the point of my boring story about seven times in six months for the same infections.

Sheesh, I thought eveyone already knew how the system worked. You get ignored if something isn't coming out of you making a big bio hazard mess. Spit blood all over the ER and you'll get the janitor's attention. When the janitor complains about the mess it gets attention to your issue. You're lower on their social order than the janitor however you can make that work for you because they all need the janitor's cooperation. And that is how hospitals work. :) :) :) :) :)

SO COMPLAIN ALREADY!!! Make them figure it out. Demand a diagnosis, prognosis and treatment plan for the issues you need addressed. Go on, but bring a tablet along so you can keep us informed on how it's going. :)

[Pete]

From another of your "pseudo dads": Please call tomorrow for an appointment with Dr Chung. Your life may be in jeopardy.

[drz]

I get so damn tired of how they treat me in the ER. It's really .
In a nutshell ... I just hate it all. I feel like keeping my complaints to myself and pretending there is absolutely nothing amiss. If I go into the ER half dead, maybe then they'll pay attention.


Not a good plan. You might end up fully dead or very damaged like some of us!

I remember seeing a dozen doctors for over two years before my diagnosis of Wegs because of the variety of strange symptoms Wegs can cause. They all ruled out some issue they understood but none gave me any valid explanation for what was causing my pain or problem I presented to them.

No one put it altogether and offered any effective treatment for my undiagnosed Wegs so I continued to get worse tell I ended up in the hospital with everything going downhill. They kept ruling things out i didn't have but I still had no clue why I was steadily going down hill. The doctors ruled out several things again I didn't have, like TB, Cancer, pneumonia, broken wrist, infection, and some other things they thought might explain my deteriorating health and assorted symptoms.

My kidneys were failing, my hearing was gone, and I was seriously anemic and on constant blood transfusions since my lungs were bleeding and I was coughing up blood and I was soon going to be dead without an explanation as to how or why.

They kept calling in various new specialists and finally a rheumatologist ordered some tests to be sent to Mayo and a consultation. So finally the nephrologist came rushing in one morning and said there is a 99% chance you have Wegs and we need to get you somewhere quickly where they know how to treat it because it is a very fast moving aggressive nasty disease.

Mayo wouldn't take me because I had just gone on Medicare the day after I was admitted so I was off in a few hours to a large University Hospital in the big city where the doctor said his friends would get me the care i needed. Because of the delay in treatment and my serious damage by then my survival was very iffy. I spent weeks knocking on deaths door and often I was sure I would never leave the hospital alive as was my family. I made a new will just before they put me into a drug induced coma to try save my life. Several doctors later told me my survival was very doubtful. It took three months in the hospital and another three months in a nursing home working on rehab to to learn to walk, talk, and do enough basic self care to move to a more independent setting.

I did survive and recovered from much of the damage caused by the Wegs and treatment but still have much resultant damage and loss in my health--kidney damage, loss of hearing, lung damage, balance problems, serious neuropathy, enormous fatigue,cognitive impairment etc but I am very glad to be alive and still able to enjoy my new life living in a light assisted living complex attached to a nursing home that has a medical unit and quick help if needed.

However, if I could turn back the clock 8 years and do things over, I would have gone to Mayo and demanded a full workup to try discover what was causing all all my Weg symptoms and I might have got treatment earlier that would have spared me of most of the damage caused by Wegs. I had been there for hand surgery but never pursued seeing other specialists that might have addressed my joint pain, nasal crusting, fatigue, etc and later blood in my urine.

NikkiNicole you still have a chance I think to get some real help before its too late so please go now!!!!

[Alysia]

Nikki, take with you someone (aggresive in the exact amount) to be your advocate.
If dr. Phil was here now, he would have say: Go to the ER/ hospital/ doc, "its an order".
So you have 2 more voices... just go. We are behind you.

[mishb]

How are you feeling today little Sis :crying:

I hope you finally went and got some treatment.

[NikkiNicole]

I am starting to feel like I am crazy. Every day it seems there is something different going on.
For the last three days it's been crazy bad shoulder pain. Last night it was my shoulders and my thumbs. This morning its just my shoulders. I haven't been dizzy but I have felt VERY tired.
It's very hard to take such minimal complaints to the ER. Even though I am unhappy, I know on the grand scale it's not the same. I mean no disrespect by what I said about waiting to go to the ER. I know people on here have been through FAR worse. I just meant that my ER doesn't seem to give two craps unless I get wheeled in via ambulance with my vitals spiraling to zero.
But, that's Kaiser for you. And Kaiser is the reason I do not, nor will I probably get, an apt w/ Dr. Chung. At least until I am in desperate need of it.
I have a headache this morning. I am anxiously awaiting the hour to pass that I have to wait after I take my CellCept so I can eat something and take a Motrin.

[Pete]

I am starting to feel like I am crazy. Every day it seems there is something different going on.
For the last three days it's been crazy bad shoulder pain. Last night it was my shoulders and my thumbs. This morning its just my shoulders. I haven't been dizzy but I have felt VERY tired.
It's very hard to take such minimal complaints to the ER. Even though I am unhappy, I know on the grand scale it's not the same. I mean no disrespect by what I said about waiting to go to the ER. I know people on here have been through FAR worse. I just meant that my ER doesn't seem to give two craps unless I get wheeled in via ambulance with my vitals spiraling to zero.
But, that's Kaiser for you. And Kaiser is the reason I do not, nor will I probably get, an apt w/ Dr. Chung. At least until I am in desperate need of it.
I have a headache this morning. I am anxiously awaiting the hour to pass that I have to wait after I take my CellCept so I can eat something and take a Motrin.

OK. Now I understand that the root of the problem is your health insurance provider. Does your employer offer a choice of plans/providers? With open enrollment approaching, can you make a change that will allow you to choose a plan that better meets your needs? Hope you can get into a better situation soon. In the meantime, you may need be more assertive about referrals to specialists. Good luck!!

[mishb]

Do you think you might be having pred withdrawals? How much pred are you taking now?
Those alternating pains certainly sound like WG

I'm glad the dizziness has stopped

[annekat]

OK. Now I understand that the root of the problem is your health insurance provider. Does your employer offer a choice of plans/providers? With open enrollment approaching, can you make a change that will allow you to choose a plan that better meets your needs? Hope you can get into a better situation soon. In the meantime, you may need be more assertive about referrals to specialists. Good luck!! I have known about this Kaiser thing all along and am thinking along the same lines as Pete. I had Kaiser in Calif. and did not think it was too bad, but I didn't have Wegs or any other life threatening condition, and I never went to the ER. I did have some strange headaches and was given both a CT scan and an MRI at no charge to me, which I thought was pretty good. And the source of my headaches, trigeminal neuralgia, was discovered and effectively treated. But I know things have probably changed in the 30 years since then, and it may well be more difficult to get good care. I do sort of dread to think what being a Weggie with Kaiser would have been like 30 years ago.

Anyway, I agree with Pete that if you have any options, explore them. You seem to speak fairly well of the rheumy who is treating you, but she doesn't seem to be getting you on an effective treatment program. You say she is a friend of Dr. Chung's, which would lead me to think maybe she can pull some strings to have you referred, if she can admit that her own treatment plan is sort of all over the place and is not really helping you in the long run. I think Pete is right that you need to be pushier and more aggressive about getting a referral to Dr. Chung. I can't see that it would cost them that much just for an appointment and consultation with her. Maybe she could make recommendations that would put her rheumy friend at Kaiser on the right track for getting you into a lasting remission. In lieu of this, please look into any other health plans that may be available, even if they cost you a little more.

You also may have some other things going on besides Wegs. Our friend Heather who just passed away had not only Wegs, but lupus, Bechet's, probably RA, fibromyalgia, existing heart issues, and who knows what else. I know you are in better shape than she was, but you have so many constantly changing symptoms that it makes me wonder. A good doc like Dr. Chung would likely look at the total picture and investigate all possibilities. I'm sorry we keep nagging you, but we really do care!

[Dirty Don]

Aaaahh, good old Kaiser: great for general upkeep on body, not so good on demanding situations. But, in my dad's case, as he was going thru the dying process (don't wanna get to that point, this is just a reference!) & Kaiser couldn't deal with it at their hospital, they summoned in outside docs from other hospital systems. They CAN do that if they want (and they still pay for it)...so give that some consideration. Your case is outside the normal range of Kaiser's capabilities...they need to be told that & they need to ask for help from outside. I have seen them do it...force them. Best to ya Nik.

[Birdie]

nor will I probably get, an apt w/ Dr. Chung. At least until I am in desperate need of it.

YOU ARE ALREADY IN DESPERATE NEED OF IT.
(yes I used all caps & bold to emphasize the statement)

You are in desperate need until your daily condition is stable and manageable.

I get that you're hesitant, that you're maybe just a bit timid about standing up for what you need. Don't worry about what you think somebody else might think. Holly cow... I think somebody else might think... That's no reason to do anything differently. Toss that notion as far away as possible.

Just because you're not bleeding does not mean you're not sick, it does not mean you don't need immediate help. The lesser daily issues are often all you're going to get as warning of major damage taking place. Push your doctor for the refferal. Push your insurance to approve it, they likely won't want to and will likely make you jump thru hoops to prove it's needed. Start jumping, stand up for you.


I am starting to feel like I am crazy.

You sound frustrated, worried, sick, fatigued, unhappy, worn down to a point where you're ready to give up, etc. Even if you were crazy you'd still deserve the best care you could get so it's two different issues anyway.

[Alysia]

I am glad you are with us Birdie. I love your posts.

[Birdie]

I am glad you are with us Birdie. I love your posts.

Thank you.

I'm not so much a warm fuzzy support kinda guy but I try to keep a clear perspective on the universe.

[NikkiNicole]

I finished my prednisone last week sometime. I was on a taper dose starting at 20mg and now I am on zero. I wondered if it was withdrawals from the prednisone too but then it was just all over the place. It's my damn shoulders mostly and it's so hard to get comfortable to fall asleep when my shoulders are the way that they are.
Knock on wood at the moment they only hurt a teeny bit. I notice it but it's not the angry throb of days before.
I am off early tonight and not back at work til 3pm tomorrow so I am going to hopefully get a LOT of sleep to start the week fresh and clear.

[Birdie]

Knock on wood at the moment they only hurt a teeny bit. I notice it but it's not the angry throb of days before.
I am off early tonight and not back at work til 3pm tomorrow so I am going to hopefully get a LOT of sleep to start the week fresh and clear.

Yipeee! You sound so much more optimistic.

[annekat]

Maybe the shoulder thing WAS the pred. I have never been down that low, and if you could actually stop, and the shoulder pain is now lessening, that sounds pretty good.

[Birdie]

Maybe the shoulder thing WAS the pred. I have never been down that low, and if you could actually stop, and the shoulder pain is now lessening, that sounds pretty good.

Speaking of joint pain...

I have never had random joint pain until last week. I the past it was always explainable/caused by activity or injury. Last week I started taking vitamin D3 supplements (1000 IU). Twelve hours after taking the first one I got massive pain in the joints on the right side. Shoulder, elbow, wrist, hip, knee and ankle all very painful. Looked it up and found claims of no side effects other than extreme dose. Took it the second day with no change in joint pain. Third day before taking it I looked deeper online and found a forum with dozens of similar questions, from those with similar result all wondering if it was due to D3. Have not taken it since and the joint pain is gone a few days later.

So anybody have experience with it?

[annekat]

I take 2000mg. of D3 a day along with 2000mg. of Calcium, as directed by my PCP, a PA, years ago before Wegs. This was related to osteopenia and low levels of Calcium in my blood, I think, though my memory of all that is hazy. I started on Fosamax around the same time, but have since stopped. Anyway, any joint pains are sporadic and can't relate them to the D3, seeing as how I take that every day. I haven't gotten low enough on any pred taper to have any serious joint pain from that. So I haven't experienced what either of you have, Gary or Nikki. I do expect some if I taper pred much lower than 7.5mg. As for the D3, everyone reacts differently to things and it sounds like there could be a connection there for you, Gary.

[Birdie]

it sounds like there could be a connection there for you, Gary.

Sheesh Anne, seems you have everything except good stuff. Do you have pot roast? Pot roast makes everything better.

I'll try the D3 again tomorrow as a test. If the pain returns I'll assume that's the cause. I don't really need the extra pain and it was bad. Blood test showed a change/deficiency which I expect is caused by being unable to spend any time in the sun. The sun does terrible things to my skin, caused by, they say... yep, prednisone, the great earthquake causer.

[mishb]

Speaking of joint pain...
Twelve hours after taking the first one I got massive pain in the joints on the right side. Shoulder, elbow, wrist, hip, knee and ankle all very painful.



This happens to me quite often but not from having vitamin D. Also add fingers and hands to the mixture.

I used to believe it happened if I had lemon or pineapple or orange and decided that I was allergic to anything citrus.
Then it started happening when I had peas or corn and other vegetables.
Then it happened with breads, soft drinks etc and the list continued to grow.

I have found that it is Citric Acid. Many many foods have additives of citric acid or acidity regulators and these are what cause the joint pains for me.
I have to remember to look at the ingredients in all foods and medicines, and also worry when eating out.

It may be some foods that you are eating Birdie, instead of the vitamins, but of course, we all know that our tablets also have fillers in them that some people are allergic too.

Crazy isn't it :sad:

[annekat]

Sheesh Anne, seems you have everything except good stuff. Do you have pot roast? Pot roast makes everything better.

I'll try the D3 again tomorrow as a test. If the pain returns I'll assume that's the cause. I don't really need the extra pain and it was bad. Blood test showed a change/deficiency which I expect is caused by being unable to spend any time in the sun. The sun does terrible things to my skin, caused by, they say... yep, prednisone, the great earthquake causer. Not sure what you mean.... I don't have much bad stuff compared to you or a lot of other people with WG. The D3 with you is a curiosity. If you seem to get joint pain from it today, I wonder if it's the D3 as opposed to regular D. The D3 is supposed to be best for helping absorb calcium. The difference is supposed to be that it's Cholicalciferol, where the regular D is from some other source. I have not researched it at all, but a friend believes her dog had some sort of toxic reaction to Cholicalciferol. I only saw this posted on FB and haven't talked with her at all. But she thinks it is a bad thing for any of us to use. I ignored it because I've been using it with no ill effect that I know of.

Nope, I don't have any pot roast... I don't eat much beef, just chicken, fish, tofu, and eggs. Had a burger the other day at a restaurant and it was pretty good. What do I have that's good... well, coffee, at this moment.

[Birdie]

What do I have that's good... well, coffee, at this moment.

And a cents of humour/attitude/outlook.

[NikkiNicole]

I spoke too soon. Note to self: Don't mention that things aren't hurting. :predrage:

Knees and shoulders took up the charge against me last night. Shoulders still ache today, one thumb, my toes, and my left knee. Son of a biscuit eating bulldog I sure am tired of this.

I have not tried D3. I took Vitamin D when I was on high dose prednisone back at the beginning of all of this. I probably should add more vitamins into the pile of pills I take every day. (I know that pile is probably small in comparison to some). I know I, at the very least, could use a multi vitamin thrown in. I just happen to be looking at supplements online right now.

I hope that you figure it out, Birdie. It really sucks when things that are supposed to help us survive make us miserable. That's why I am no longer on Methotrexate ... no matter what I did (pills, injections) I felt a hundred times worse than just forging ahead on my own.

Have I mentioned lately that I love this disease? I don't know ... part of me thinks (and this is awful of me) that if I was in worse shape it would be easier to deal with. I would have definitive issues that people see and understand versus seeing me trying to be as normal as possible and not understanding that I am miserable inside. I guess that's on me for trying to keep smiling and my whines to myself (except on here!) I just don't like it when people whine and whine and whine for no reason ... and since I look so damn healthy (except the weight and now the extra 10 lbs my short dose of prednisone gave me) my whining is for no reason in their eyes.

I just want all of us to be in a place where we are happy and comfortable and pain free.

Someone mentioned the possibility of additional diagnoses in a post and my rheumy has wondered that as well. She mentioned fibromyalgia because of the nonstop symptoms that don't seem to be alleviated by anything. I already have Hashimoto's and Wegener's ... I'm in remission from my plasmacytoma (singular myeloma like) ... why not add something else, right?

[annekat]

Oh, DRAT, Nikki. The pain in all those places, coming and going, sounds like what people have described with Wegs, though any joint or other pain I've experienced has not been of the "roving" variety.

Vitamin D3 is just a type of Vitamin D. According to my PA and others, it does a better job helping your body absorb calcium than plain Vit. D. It is usually prescribed along with a calcium supplement in the same number of mg. In my case, it's 2000mg. but could be different for someone else according to the levels of calcium and D measured in their blood.

I would look at the possibility of multiple diagnoses and encourage your doc along those lines. A FB friend of mine in Seattle has started seeing a rheumy she really likes in Portland, a vasculitis specialist, who has concluded that she not only has vasculitis (a different one than WG) but she also has fibromyalgia. If I'm remembering it right. I keep hearing of people who have more than one autoimmune condition or other troublesome diseases.

[NikkiNicole]

I want to scream at the top of my lungs but I am at work and will refrain.

I need something to relax me for the plane ride. My GP is on maternity leave so I asked my rheumy because I get bounced around at the GP's office. She tells me to ask the GP office. I emailed the one doc I saw while I was sick and am hoping she can help. I'm super claustrophic and terrified of flying. My GP suggested this to me years ago and then ... I have to take Valium every time I have an MRI so it seems only logical that I take something before being strapped into a metal tube and launched into the sky. Right? I feel like I am running in circles.

I just emailed Dr. B about the fibromyalgia thing to see if there is a way to rule it out. From what I've read about it, it sounds soooooo possible. It would answer SO many questions. The random headaches, feeling feverish for no possible reason, the hot flashes, the pain, the exhaustion. It mirrors Wegs a lot but then it is also it's own extra set of symptoms.

I just would love to have a normal day. No headache, no joint pain, no exhaustion. Is that possible please?

[whatthewhat]

Our daughter was diagnosed with fibromyalgia too. Looking back, that happened as she was sliding into a flare; her "fibro" symptoms resolved after battling the WG beastie down, so I remain unconvinced she actually has/had it.

[Birdie]

I spoke too soon. Note to self: Don't mention that things aren't hurting. :predrage:
Naw, you didn't spoke too soon. You just sounded more optimistic and a bit less miserable.


at the very least, could use a multi vitamin thrown in.
Nobody listens to me, I'm goona eat some worms. You need vitamin Klondike. Don't forget, it's not a one a day vitamin.


my whining is for no reason in their eyes.
Make-em read spoon theory.


why not add something else, right?
Add something else, like hot fresh juicy pot roast, with onions, potatoes, carrots, 14 hours of cooking it makes the house smell so good.

[mishb]

I still think it's the lack of pred and it is combined with the ultra/extreme stress that you are putting yourself under in regards to getting into this airplane.

It really is the same as getting on a train.

I love the sound of Birdie's pot roast even though lamb roast is way better :flapper: think of roast Nikki, think of roast :thumbsup:

Hey you have WG and have also beaten plasmacytoma, so don't be afraid of adding something else to the mix - it's just a name.

Depending on how long your flight is, will then govern what to take to relax you a little. You will be fine :hug1:

[annekat]

The flight should not be very long, it's only from SF to LA (or other S CA airport). I'm thinking half an hour to 45 min. in the air. Not counting all the messing around before take-off and after landing.