Frustrated and not feeling better

[rebekah]

Just me ranting here. I’m having a bad day and need to get my frustration out somehow...

I thought I was getting better, but I started lowering prednisone and my numbers decided to go up. I was feeling fine despite my sed rate increasing. I had lab work done the first day I came to Ohio since I had an appointment with my doctor the next day. My sed rate was 20 (it was 14 the beginning of July) and it continued to increase to 35 and most recently 54. I started to see wegs symptoms around the time my sed rate hit 35 (my cough and sinuses became worse, joint pain, feeling hot all the time...). I had slowly lowered pred from 50mg to 30mg, but increased pred again and started Rituxan (2 infusions 2 weeks apart). I had my last Rituxan infusion Friday and yesterday I coughed up blood (yes, I did tell my doctor). I haven’t coughed up blood since February with my last flare. I know it’s a slow process, but I am just tired and frustrated that things aren’t getting better faster. Grrrrrrr… I just want to be able to lower pred without problems.

And I still don’t have an answer for the chest pain and high heart rate that caused me to go to the hospital back in July. I know my heart working hard for so long isn’t good, and the pain is just unbearable some days. Grrrrrrr Just another thing I’m dealing with...

Okay, I’m ending my mini rant now. I know things will get better; I just needed to get some of the frustration out. Going to eat some ice cream now.

I am getting more lab work tomorrow, so I’m hoping my numbers are coming down and coughing up blood was just a one time thing.

[pberggren1]

I'm so sorry sweetie..........:crying:

You can rant here anytime and we will listen, and we all understand as well. Sometimes one can never get off pred. It is like the disease starts to activate again when it gets to a low dose. I have reserved myself to the fact that I may never get off of it.

[NikkiNicole]

Feel free to rant away here! I can sympathize with your pain. I feel like I get worse every single day. I am frustrated because I was looking forward to feeling a little bit better for awhile.
BIG HUGS!!!!!!!!!!!!

[gilders]

Sorry to hear Mr Wegener is ignoring his orders from Mr Medicine.
There is something that might put a smile on your face. Everytime I look away from my dog she starts crying. Why should this put a smile on your face?
Because its taken me about an hour to realise that the "crying" is actually my nose whistling when I breath. D'oh!

[annekat]

Rebekah, I'm so glad you ranted, and so sorry you are feeling worse. I know we all have ups and downs, so I hope it is a temporary blip on the radar screen. But when my sed rate went up to 50 or more it was definitely because I was having a flare. I think my doc had underprescribed my MTX, and when that was raised, along with a temporary hike in the pred, I saw quick improvement over the next few weeks. This was last winter, I've stayed on the increased amount of MTX and am now tapering down from 10mg. pred, and am doing better than ever. I hope your situation is as easily resolved... I'm glad you have a good doctor and are also in the same state with the Cleveland Clinic in case any of those world-renowned docs might get involved at some point. I think you are on RTX and don't remember when your last infusion was.... that makes it hard for me to comment, since I'm not the least bit RTX savvy. But maybe you are on another immunosuppressant, too, and maybe an adjustment in dosage would help. Just ideas off the top of my head, as I really don't know how your case compares to mine.

[annekat]

Oh, doofus me, I just re-read your post, and you said exactly when you got your last RTX, very recently! All I know is what I've heard and what you no doubt have experienced, that it takes a while to work. It would be nice for you to have something else while waiting for the RTX to work, but I don't know how much they do that. I really don't know a thing! I'm just wishing you could get some relief, and hoping when the RTX does kick in, you will get a whole new lease on life!

[rebekah]

Awww, thank you guys! I love you all soooo much! I remember it took time to see improvement after the Rituxan infusions, but I had them in March and was hoping I wouldn't have flared this soon. I only got down to 20mg pred in February when I flared, and 30mg this time. I'm okay with staying on a low dose of pred forever to prevent flares (I know I have to for a while with the transplant-good thing my kidneys are okay right now), but if I'm still on a relatively high dose and flare... I just don't know what to do! I think coughing up a little blood last night just freaked me out a little too. I also increased Imuran to 150mg when I increased the pred so hopefully that helps.

[carriej22]

Ice cream makes almost every situation better.

Anyone who tells you otherwise is lying.

[rebekah]

Especially mint chocolate chip. If only ice cream could cure everything...

[pberggren1]

Rebekah, where are you located right now? In Tampa? Have you gone to the Mayo in Jacksonville?

[rebekah]

I moved to Columbus, Ohio last month. I guess I should change my location. I really like my new doctors, but now that I'm in Ohio I'm going to definitely try to see a specialist at CC... once my insurance kicks in... I have to wait a few months since I just got new insurance and am not covered yet because of the pre-existing condition.

[pberggren1]

When will your insurance kick in? From what I hear at CC Alexandra Villa Forte is the doc to see there.

[rebekah]

I'll be covered in 3 months, starting in December, not ideal but it's better than the usual 6 months. I have heard great things about Dr. Villa Forte on here. I'd try to see her or Dr. Langford. I met her at the symposium and she seems really nice.

[pberggren1]

3 months is not too bad is you are doing well.......ahem......

Carol is nice too. I talked with her on the phone many years back. She knows her stuff.

[rebekah]

If my blood results are still off tomorrow I might contact one of them and see if I can get an appointment even though I'm not covered. Not sure if that's an option, but it would be worth asking.

[pberggren1]

I would def contact one of them now even if your blood results are not normal. I'm sure they would be more than happy to help in any way they can and once they find out you are a med student with interest in vasculitides I bet they will bring you in for free.

[annekat]

Ice cream makes almost every situation better.

Anyone who tells you otherwise is lying. I am about to have some. It is actually not ice cream, but rainbow sherbet. Close. It will be a good chaser for the spaghetti I just ate.

[Pete]

I moved to Columbus, Ohio last month. I guess I should change my location. I really like my new doctors, but now that I'm in Ohio I'm going to definitely try to see a specialist at CC... once my insurance kicks in... I have to wait a few months since I just got new insurance and am not covered yet because of the pre-existing condition.

Hi Rebekah,

If you don't mind my asking, which doctors are you seeing here in Columbus?? Hope all is going better each day for you.

This is the prettiest time of year in Columbus, if you can stand all OSU football all the time.:wink1: Winter will not be fun for someone who's spent much time in the sunny south.

[rebekah]

I really love Columbus, especially all of the football (I’m a huge sports fan). I’ve officially been converted to a Buckeye, and I've only been here a month. I’m hoping to feel better and get to a game soon, but the tickets are so expensive! I can’t wait for the leaves to change color. I’ve never seen snow before, so I’m actually excited for winter too. All I have are shorts and flip flops, which are fine for right now, but I need to go shopping for a coat and boots soon.

My doctors are:
Rheumatologist: Dr. Stacy Ardoin
Pulmonologist: Dr. Nitin Bhatt
ENT: Dr. Welling

I don't have a nephrologist yet, but I may go with Dr. Udayan Bhatt. My doctor gave me another name, and while I trust her recommendation, I’d rather see a doctor that you recommend since I know they’ll be good and have experience with wegs. Though it seems I can’t go wrong with any doctor at OSU.

[blu4runner]

Well I hope you get to feeling better soon. I too am waiting to see the full benefit since I have finished my rituxan infusions bit I'm still not feeling all that great either. Take care of yourself

[annekat]

Rebekah, I will always remember that one of your docs is Dr. Welling, because my last name is Wellings, with an s. Both are very uncommon here in the US, maybe not so much in England, or maybe there, too.... In any case, I'm glad you are so happy with Columbus and the docs you have there. Snow should be a lot of fun for you, once you learn how to get around in it. I hope you are starting to feel better.

[rebekah]

I hope you start to feel better soon, Victor. I think it took about 2-3 months before I saw improvement but everyone's different. I hope it comes sooner for you.

[Debbie C]

aRebekah, Sorry to here you are not felling well.....do you think it was the stress from trying to find a dr. in Fl. then all you had to do to make the move to Ohio.Maybe once things get more settled and now you know you have good drs. things might get better.Coughing up blood would freak me out too....I think I would go straight to the e.r. if that happened to me,but the idiots here in Youngstown they would think nothing of it. Have you come across a Planet Smoothie around where you live? I used to love them in Fl. but there is not one around me here. You need to find one ...you'll love it as much as ice cream !!! I'm going up to Cleveland on the 8th and I know he is going to want me to have a flu shot and I don't want it. Going next week for a ct scan of my stomach and more blood work. Enough about me ...hope the rtx kicks in soon and you are feeling alot better. I also wanted to tell you my sister is up from Fl. and ever since shes been here her sinuses have been awful..popping benedryl everyday,so maybe the climate change isn't helping either......Take Care:hug2:

[annekat]

I'm thinking that any move, even a good one, has to be stressful in many ways. Perhaps that stress has contributed to your currently not feeling so great. With your good feelings about your move, though, I think that stress is being minimized and perhaps things will turn around soon.... I sure hope so!

[rebekah]

I'm sure the stress from moving and now looking for a job and studying isn't helping... I'm taking an online class and started studying for the MCAT again a few days ago. Every time I open the book I ask "why do I want to be a doctor again?" My friend is going through the application process right now and calls all the time to ask for help, and I just don't know that I want to go through that whole thing again. It's pure torture. I had my first sinus CT last week (my doctor was shocked that I never had one before) and there was inflammation, but the meds should kick in and help soon. I know some of it's from damage, he wanted to prescribe a nasal spray, but a side effect is nosebleeds. I'm still on Coumadin and would like to avoid nosebleeds. But like you say Debra, maybe some of my sinus problems are from the move...

I don't think I can ever love anything as much as ice cream (I have a carton every night before bed), but whenever I wasn't feeling well my friends would always come by bringing ice cream or a smoothie from Jamba Juice. I'll have to look online to find a smoothie place around here. I'm sure there has to be one near campus.

I got lab work done this morning, so I'm anxiously waiting for the results to be posted online. I'm hoping my numbers are coming down, but I don't know how soon I should start to see that...

I hope the appointment at CC goes well for you, Debra! I'm not sure if I'll get a flu shot, even after hearing from doctors at the symposium say it's okay. I see my rheumy next week so I'm sure she'll talk to me about getting one then. Enjoy the time with your sister. :)

[Barbara N]

Just me ranting here. I’m having a bad day and need to get my frustration out somehow...

I thought I was getting better, but I started lowering prednisone and my numbers decided to go up. I was feeling fine despite my sed rate increasing. I had lab work done the first day I came to Ohio since I had an appointment with my doctor the next day. My sed rate was 20 (it was 14 the beginning of July) and it continued to increase to 35 and most recently 54. I started to see wegs symptoms around the time my sed rate hit 35 (my cough and sinuses became worse, joint pain, feeling hot all the time...). I had slowly lowered pred from 50mg to 30mg, but increased pred again and started Rituxan (2 infusions 2 weeks apart). I had my last Rituxan infusion Friday and yesterday I coughed up blood (yes, I did tell my doctor). I haven’t coughed up blood since February with my last flare. I know it’s a slow process, but I am just tired and frustrated that things aren’t getting better faster. Grrrrrrr… I just want to be able to lower pred without problems.

And I still don’t have an answer for the chest pain and high heart rate that caused me to go to the hospital back in July. I know my heart working hard for so long isn’t good, and the pain is just unbearable some days. Grrrrrrr Just another thing I’m dealing with...

Okay, I’m ending my mini rant now. I know things will get better; I just needed to get some of the frustration out. Going to eat some ice cream now.

I am getting more lab work tomorrow, so I’m hoping my numbers are coming down and coughing up blood was just a one time thing.

I-m sorry you aren-t feeling well. You just don-t ever seem to get a break and it isn-t fair.I wish there was something I could do to help you. My pain was so bad mostly in the face and jaw and of course the joints that they put me on morphine but it didn-t begin to treat the pain so they give me a five day Ketamine treatment every six months and I haven-t had any pain since the first one, I am just about to have the second round. It leaves you a bit stoned for a few days but then it passes and my short term memory disappeared for a few weeks but had returned now. Stay strong and positive. Animo, Barbara

[Alysia]

Hi Rebekah,
you are such a sweet girl that even that "WG-dog" loves you too much and don't release you :love: :w00t: :crying:
but it is time for it to let you some peacful time :mad1:
maybe you should get your RTX in less then every 6 months.
speaking of ice cream - I didn't eat any for years. since I have colon involvement I can't bare it. I do miss it sometimes but I know how much I will suffer if I eat it, so I don't try. but maybe it is better. sugar is inflamtions-encouraging.
I am sending you my love and my praying :hug1: you deserve to have good times.
please update us.

[Alysia]

I am just about to have the second round.

Hi Barbara,
good luck with your second round of Ketamine treatment !
How are you this days ?
I hope you are feeling OK and enjoy riding your beautiful horse...

[rebekah]

Thanks everyone, I'm feeling a little better today. I knew I would probably flare again, I just hoped it wouldn't be this soon. All the love and support from all of you definitely help. The scan yesterday showed lung nodules, so that explains the coughing up blood. Hopefully all these meds help soon and that doesn't happen again. I see the pulmonologist and rheumatologist next week, so I'll let you know how that goes.

So glad to hear the Ketamine treatment is helping you, Barbara. I hope all goes well with your next one.

[rebekah]

I saw the rheumatologist today. We are going to keep monitoring my blood work regularly and once my numbers come down and are stable I'll be able to start lowering pred again. The increase in steroids should make me feel better, but I haven't noticed much of a difference yet. I'm hoping to start to see an improvement soon. I also discussed taking a stronger pain med (oxycodone) to help with the pain. I am a little hesitant since it can be addictive, but as long as I'm careful I should be fine. My old doctor only gave me Tramadol, but that wasn't helping at all so I just stopped taking it and dealt with the pain. I'm starting to think the chest pain may be related to wegs since it began shortly before I found out I was flaring. I'm still just throwing around ideas in my head since my doctors aren't sure what is causing it since all the tests came back fine. I'm glad they're coming back normal, but it's not helping us find an answer.

Thanks for letting me vent here the other day... I really don't know what I would do without you!

[annekat]

That is why we are here, Rebekah! I don't know what I would do without this forum, either. I'm glad you are getting a little better handle on what is going on, even though you still need some answers, and I'm glad your tests are coming back OK.

[gilders]

Don't know if this will help with the pain meds, but I've found I quickly get used to pain medication and it loses it's effectiveness.
The good news is that when I've returned to the medication a good while later, it's as though my body has forgot it got used to them and they're effective again for a while.

[rebekah]

I plan to be very careful with it and take it sparingly... only when I really need some relief. I don't want to become addicted. I've been tempted to go to the hospital some days because of the pain just to get some morphine to help, but this should definitely help.

[annekat]

I'm sorry about your pain, Rebekah, and others with severe pain. I have been lucky enough not to have that. I don't know why. I wish you didn't either. As for the pain killers, I'm sure you will be sensible with them and I'm glad they are available to give you some relief.

[rebekah]

Thanks, Anne. Glad you haven't had this severe pain and I hope you never do.

[annekat]

Thanks, Anne. Glad you haven't had this severe pain and I hope you never do. Thanks. Me, too, but I doubt I am immune to it, so it helps to hear of its existence from others so I won't be too surprised if I ever get it.

[hgustafs]

Just me ranting here. I’m having a bad day and need to get my frustration out somehow...

I thought I was getting better, but I started lowering prednisone and my numbers decided to go up. I was feeling fine despite my sed rate increasing. I had lab work done the first day I came to Ohio since I had an appointment with my doctor the next day. My sed rate was 20 (it was 14 the beginning of July) and it continued to increase to 35 and most recently 54. I started to see wegs symptoms around the time my sed rate hit 35 (my cough and sinuses became worse, joint pain, feeling hot all the time...). I had slowly lowered pred from 50mg to 30mg, but increased pred again and started Rituxan (2 infusions 2 weeks apart). I had my last Rituxan infusion Friday and yesterday I coughed up blood (yes, I did tell my doctor). I haven’t coughed up blood since February with my last flare. I know it’s a slow process, but I am just tired and frustrated that things aren’t getting better faster. Grrrrrrr… I just want to be able to lower pred without problems.

And I still don’t have an answer for the chest pain and high heart rate that caused me to go to the hospital back in July. I know my heart working hard for so long isn’t good, and the pain is just unbearable some days. Grrrrrrr Just another thing I’m dealing with...

Okay, I’m ending my mini rant now. I know things will get better; I just needed to get some of the frustration out. Going to eat some ice cream now.

I am getting more lab work tomorrow, so I’m hoping my numbers are coming down and coughing up blood was just a one time thing.

Hope things are getting better for you.

The last time i was in the hospital i found out the chest pain and high heart rate i was suffering from was a condition known as Pericarditis, which resulted in fluid buildup in the Pericardium causing increased chest pains and heart rate going way to high, according to my doctor it´s a known but not too common complication in wegeners, at least worth checking out. a decent cardiologist should be able to find out using ultrasound.

[rebekah]

Oh my, I'm sorry to hear about your heart. I'm glad they found an answer for you and hope things are better for you now.

When I was in the hospital in the beginning of July for the chest pain I had numerous tests done: EKGs, xrays, a CT, and an echo. All of those came back normal. I also did a barium swallow test to see if acid reflux was a problem, but that came back fine. After 5 days in the hospital with no answer for the pain and high heart rate I was discharged. I saw a cardiologist after and had a 24 hour holter monitor which showed my heart rate ranged from 65-170s. Even though I kept a decent log, all I did was stay in bed unless I was getting up to make food, the doctor wasn't concerned with my HR at all saying 65 was normal... even though that was likely when I was sleeping/napping. My new doctor here is concerned that my HR is still high 3 months later, but says if the tests are normal and the cardio and EP cardio docs aren't concerned she isn't too much either. I'm thinking about seeing a cardio doc up here just to make sure things are okay, and maybe they'll be able to suggest possible causes if it's not my heart. The docs in Florida just said "it's not your heart." Great, but then what is it? Hmmm... well other than that I am slowly starting to feel better. I'm just taking it one day at a time.

[Pete]

Haven't had to see a cardiologist in Columbus yet. I'm sure there are good ones on staff at OSU and Riverside.

Good luck!

[rebekah]

Thanks! My rheumy gave me the names of a few cardiologists she recommends. I haven't decided if I'm going to make an appointment with one, but it certainly doesn't hurt to triple check to make sure nothing is wrong with my heart. I think I'm just paranoid that the doctors in Florida missed something since most of my doctors down there sucked.

[Dirty Don]

New home, new docs Rebekah...hang tough...you're a go-getter...just make sure you don't run yourself down while adjusting and sorting out the new life! And I, too, hate the paranoia produced by having this disease...it's almost the worst part of it at times...keep on m'dear!

[hgustafs]

Thanks! My rheumy gave me the names of a few cardiologists she recommends. I haven't decided if I'm going to make an appointment with one, but it certainly doesn't hurt to triple check to make sure nothing is wrong with my heart. I think I'm just paranoid that the doctors in Florida missed something since most of my doctors down there sucked.

Yes make sure,
I don´t want to make you uneccesarily paranoid allthough it seems necessary to be so.
i was admitted into a hospital on the 11th of sept with heartrate high and chest pains, docs upped my preds and said it was probably the pericarditis and the pneumonia, the increased steroids should counter it, on the morning of the 14th i was in bed talking to a doctor about my chestpains when my heartrate just went through the roof 200+ and my pressure dropped and everything went black. The doctors drained 500 ml of fluids from around my heart and it took a week and a half for the bruises on my chest to go away that came from the pounding it took to get the heart doing its thing again. the cardio doc that looked at me first said i was fine and all he could see was pneumonia, 2 days later i was almost dead. And now if I complain about anything in my chest its always followed with an ultrasound on the heart.
So make sure you have knowledgable doctors that take your symptoms seriusly, it really is a matter of life or death.

[Mizamonie]

Hi Rebekah,
It is so frustrating when you feel like nothing is ever going to get better and pain makes it all so much harder to deal with. Are you taking any pain meds? I know in Florida it's almost impossible to get anyone to prescribe them. My husband is on the fentanyl patch and Vicodin, but I know that the only reason he is able to get his dr. to prescribe is because of his massive skin ulcerations. Keep the faith and continue to reach out. Everyone here is so amazing and will be cheering you on.

[rebekah]

Hgustafs, what an ordeal you went through, I can't even begin to imagine. I'm glad you are doing better now than a few weeks ago. And thanks for that, sometimes I don't worry enough when I should. I will often blow off some of my symptoms (i.e., coughing up blood) when I know I shouldn't. I don't know if it's because I'm used to having doctors I could never get in touch with or I'm pre-med and just a bad patient, maybe a combination of both. I will take your advice and call Monday to get an appointment with a cardiologist. I definitely don't want to wait if something may be wrong. If not, at least I for sure ruled out my heart.

I agree, Mizamonie, it is impossible to get doctors in Florida to prescribe pain meds. My doctors there would only ever prescribe Tramadol which did nothing to help and refused to prescribe a stronger pain med. I just moved to Ohio about 2 months ago and the doctors here are way better. I saw my doctor Thursday and she wrote a prescription for Oxycodone, that stuff should definitely help. I was in pain last night, but the Buckeyes had a big game and I had to watch it (I love sports), so I didn't take any pain meds since I don't know how the new med is going to affect me. I'll take it next time for some relief. I'm sorry your husband is in pain, but glad he has some pain meds to help. I hope he is doing well.