Dizziness, Hair Loss, & Fluoroquinolone Posioning (Floxed)

[StephaniaWi]

Hi Everyone. This is my first post though I have been reading for a few years. I had primarily lung involvement and confirmed lung biopsy and positive “anca”. I wasn't able to get on the forum all these years though I tried many times. The only person I have talked to is Sangye in my darkest moments via e-mail, she was nice enough to direct me in those times.

I have recently been treated with Rituxan 4 bags each time (Nov 2012 & July-Aug 2013) and according to my doctor I am in “remission”. I am very naive to a lot of the specifics. I read what many of you know about your blood work and labs and I know nothing. It isn't that I don’t care or couldn't comprehend but more that my Drs do not tell me. I do ask a lot of questions and try and figure it all out. My meds are 1000mg mycophenolate (cellcept), 1800mg gabapentin, and I take a few OTC supplements. I am not on prednisone right now.

As far as my initial WG symptoms like coughing blood, papura, & similar all of them are gone. I am being treated every 6 months with rituxan to try and prevent relapse. In May 2013 I began to get dizzy. Rhuem did the full works and said I was perfectly fine. Primary care Dr said I was fine. Rhuem said see an allergist and $600 later, and a 6wk food journal, said I was fine. Dizzy for no reason . No other nose and ear symptoms and all the doctors said my ears look picture perfect.

In June the primary care doctor prescribed levaquin because I tested positive for a bladder infection. (mixed flora) Twice I took 10 750mg pills June 3rd to 10th and then again 06-21 I was prescribed another round because mixed flora didn't go away and I tested positive again. On about the 4th day of the second round I noticed my arm was excruciating pain. Nothing I ever had before. Previously my legs began to ache and keep me up at night. I have always had tremendous nerve pain hence the Gabapentin but never this. I thought I was going crazy. I made an appointment with a psychiatrist and my therapist from when I was first diagnosed and got out of intensive care. I thought the pain in my legs and the confusion was mental, I was taking my mental pain and manifesting it into physical pain. I was having crying spells for no reason and losing it. Then my hair started to fall out.

During that second round of levaquin I had that terrible arm pain I ended up googling it. Which I had done before but only for drug interactions. Turns out there is a black box warning and you are supposed to stop taking it if you have any pain or what I was experiencing. It was too late, it did me in. If you google fluorquinolone poisoning you will find story after story of ruined lives. Ankle pain, arm pain, you name it. My hair is still falling out and I barely have any left at 27 years old. I did contact the Rhuem as soon as I figured it out and he ordered me into bed to prevent a joint rupture. Which I didn't listen. I have little support system and a million bills, not to mention no health insurance if I do not go to work. I also have a stressful job. So I worked through all of it. He asked me why did I take the levaquin if I started having these symptoms and I said I didn't know, I wasn't warned. Which I wasn't. I didn't get the black box warning. I thought it was in my head.

I went to a dermatologist for the hair loss who ran all blood said my iron was so slightly high and thyroid was fine, looks like medicinally induced Telogen Effluvium or stressful event, but I didn't experience anything traumatic recently.

After a visit with Rhuem and all labs he tested me for lupus and some arthritis (August 2013) and said I was normal. He physically examined me and told me I had fibromyalgia. He said a few years ago the retired rheum who diagnosed me wrote in my file I had something musculoskeletal but would wait for it to manifest into a diagnosed disease. I have almost all the tender points. I knew something was wrong because he says my WG is in check but yet I wake up in the morning and can’t walk because my ankles hurt and the bottoms of my feet feel like they are on fire. I feel like I have worked out for 10 hours the day before even though I didn't do much physical. I am fatigued day in and out. I go to work crabby until my medication kicks in. The psyche people say I do not seem depressed and maybe I am just in so much pain I think I am. The lists of symptoms go on but I have none of the chest blood or nose bleed I did when I relapsed last year.

Now I am just dizzy from May until July, then it was a lot less noticeable and now back with a vengeance. I have searched these forums inside and out. I do not know what I should do. Who I should see. I have pain all over my body. The more walking I do today, the harder it is for me to walk tomorrow and the worse it hurts. I was in my bedroom hobbling around last night thinking it is something worse, something a lot worse than Fibro, and I will lock up and die soon. I have read Sangye opinion of “Get off sugar and take care of the gut yeast infection as well as the HCl” and I have been eating low carb since January. I do not eat much fake sugar either; if I do it is erythinol and maybe 1-2 times a month, I just go without much sweets. Wouldn't I have improved instead of keep getting worse?

I am scared to be 27 and getting worse. I do not know how much longer I will be able to work and who is going to help me get disability. My Rhuem just shrugged his shoulders and said that flox poisoning will go away eventually and my ankles will stop hurting. My hair will grow back. He said Gabapentin is the treatment for fibro. I have a prescription for Cymbalta from the psyche but am afraid to take it because it is $585 with my insurance and after my out of pocket maximum which I have to pay every year, if I were to lose my job I wouldn't be able to pay it. I have read story after story how it is impossible to get off of it. I am more worried about the fatigue, chronic body pain, and that my feet have been sore “nerve pain” they state but now if I do any sort of walking, like going to a ball game or something, the next day when my feet hit the floor I yelp and have to slowly get them to move. I have the brain fog and confusion as well. Any recommendations, what would you do in my situation?

[Dirty Don]

Glad you finally got thru to the forum of all forums!! Weggies! Wow, you are having a hard time of it. My first question is: are your docs WG experienced...they seem like they have you on the right tracks, but something is not working for you. You sound as if you need to ask a lot of questions to get some affirmations and answers about WG and you. Duh! As for the mental parts...I take Lexapro with Xanax backups. Works for me, I have my ups and downs, but the meds do take a lot of the stress of WG away, or at least put them in a corner for me not to think about all the time! Sangye is correct about the gut being the major source of issues with the body. Need to keep the tummy happy, so I am taking pantoprazole, have added some promethazine for current stomach issues, and changed diet...they work temporarily. The gastro suggested I may have stomach issues along the way for the rest of the time, I am thinking he was correct now...sheesh. Your youth is both a plus and a curse: you have tons of time to figure this out, just gotta stay steady and follow good directions; then again, having this damnable disease at such a young age...many sorries to you. Best to you, ask all the questions you need, someone has an answer to consider on here.

[annekat]

Welcome to the forum, Stephania, and I'm sorry I can't give a lot of advice except what others will no doubt say, to make sure you have a real Wegener's specialist, or a doc who will consult with one, and they are listed on the Vasculitis Foundation website under Support and then Medical Consultants. I don't have as many health issues as you do, including different ones than just Wegs, and I don't have a specialist, because there are not any real ones in my area and my Wegs is quite well under control. I'm glad you finally were able to get on the forum, and am somewhat mystified, since I got on right away. But I do remembering hearing of that issue before.

I did take Levaquin once, before ever knowing I had Wegs, and it was the only antibiotic in pill form that could knock out the severe ear infection in both ears, which was probably the beginning of my Wegs, though I didn't know it until 2.5 years later. Anyway, I think the Levaquin was the same dose, 750mg. for a week or 10 days. After a couple of days, I had severe joint stiffness and pain and could barely get around, plus I could feel a weakness in my tendons. I did the same research as you did online, and no, had not been warned of these possible side effects. When, I told the ENT doc who prescribed it, he said, "Well, we won't do that again....". I guess I was lucky, I have not had any lasting effects from this episode. I did have some periods of joint pain later on, which I thought could be related, and I tested negative for RA. In retrospect those secondary periods of joint pain seem very likely to have been from Wegener's, and even the problem which I thought was from Levaquin could have been Wegs. I doubt there's any way of knowing at this point. But there are warnings about tendon rupture on the info sheet, among other things, and it goes to show people should read these sheets. The problem is that I've found that doctors often seem to be doubtful or dismissive when told about the occurrence of these things, as if they think it is all an exaggeration or the chances are very slim of any real problems. And most people tend to go ahead and take the drugs their docs have prescribed, despite what it says on these sheets. In any case, I'm very sorry you had the problems with Levaquin that you did. I have taken Cipro, another one of the flouroquinolones, and had no adverse reactions. Weird stuff.

Keep us posted, and I look forward to hearing more from you.

[StephaniaWi]

I do not have someone listed as an actual WG specialist. I was diagnosed after 8 days in hell in intensive care after the lung biopsy by someone who retired. Then I was not informed he was retiring and of course flared, I went to a highly accredited rhuem with his pictures all over covers of all the magazines and he started fast tapering me on pred and couldn't seem to order the rituxan right so I kept getting sicker until nose bleeds and pain turned into coughing blood and I had to walk into the emergency room just to get rituxan because it worked the first time I was diagnosed and treated with it a little over a year earlier. So then, I was pretty upset with that rhuem to be honest and finally the rhuem who worked with mine who retired waddled over to the hospital and ordered the rituxan. He has been seeing me ever since. I have asked him if I need a specialist and he says that I can do whatever I want and he has successfully been treating wg patients for years. He and I fought to the death my insurance company this last time when they denied rituxan and tried to force cytoxan on me, citing bladder cancer and infertilility he wasn't going to stand for it. He takes about 3-5 months to get an appointment with so if I have a question or issue I write him a letter and fax it and he calls me at about 6-8pm from his office just to answer me. I feel like he knows what he is doing and seeing as before him doctor after doctor dismissed me, and made critical errors in my care, I just have stayed with him. There are no WG specialists I can find in Milwaukee, or near here and I have searched. I have never consulted a specialist. I figure it would be a waste of money and time. Doctors do not seem very helpful to me.

Finding the energy or time to research all of this is tough. I work a very demanding job and my life falls apart because of it. I cannot even keep my house clean. Lately I have been having so much forgetfulness and confusion. I do not have good balance, sometimes I think it is pain in my feet and legs causing it and other times I think it might be serious. I am a mess, It isn't like I haven't been to a bunch of doctors trying to get help, but they do not help really. From all the reading I do do, I know I am more fortunate than most. When I spend time trying to figure something out with my disease in the last 3+ years I find it depresses me and makes it worse. I had to write a serious appeal letter to my insurance, and I think the research about killed me, I do not recommend that.

As far as yeast and cleanses I have read you shouldn't without a dr, and I do not know what type of doctor, if insurance will cover any of it or if I have to pay on my own. I do not have money, it all goes to med bills, even with insurance it costs a fortune. Then, I bought a house the year before I was sick, before I even had a clue I was going to be sick and it sucks the life from me. It is too much house for me to care for and I do it all on my own but to clean it and fix the things that need to get fixed to even call a realtor to look at it, seems so daunting I just keep working myself to death to pay for it.

I was looking into parasite cleanses before and I read from a holistic dr that they can create super bugs in people with immune problems, I do not want bigger bugs. Not to mention Sangye telling person after person no no no on here.

[gilders]

Welcome.
I don't know what advice to give as you've got so much going on. It gets really tricky when you have more than 1 illness. I've found that when Drs run out of ideas they tend to blame WG, only for my WG specialist to say he doesn't think it's connected, leaving me with the problem not being sorted.

Sorry I can't be of much help. I will say the obvious and keep pestering Docs until you get to the bottom of things.

[StephaniaWi]

It is kind of strange to me that you say I have so much going on, this feels like nothing compared to the feelings when I was having an actual WG flare. It is nice to see an outside perspective though and it is a lot. I wake up every morning and just pray to get through the day, to even get out the door. I try to ignore my pain, thinking one day it might get better. I have been on cipro and levaquin repeatedly, when I was posioned this last time I wrote to the pharmacy and got all my medicines from 3 years before being diagnosed to find I have been on these antibiodics repeatedly, and if you have the reaction each time you take it, it becomes worse and worse. This might be why my hair actually fell out this time and I am not getting better. I wonder if the pain in my feet, hips, wrists, arms and all of this is being posioned "floxed" they call it, or if it is something like fibro. When I first realized the reaction to the antibiodics I wrote my rhuem a couple letters feeling crazy, but of all the doctors he sent me, he and the dermatologist were the only ones who did not write me off completely.

[annekat]

The pain you are feeling in your feet, hips, arms, wrists, etc. could be from Wegener's. I do not have it since getting on the proper treatment drugs, but I have read on here that it may pop up again when people try to reduce their prednisone below 15mg. or so. But since you may have other conditions besides Wegs (fibro?) and also the history with being floxed, it's harder to say, for sure.

As for specialists, I only mentioned it because it always gets mentioned on here, I guess. Personally, I think, and others have agreed, that there may be many docs who are perfectly competent to treat Wegs but are not listed on the VF site and have not seen the sheer numbers of patients that those docs have. If you feel your doc is competent and doing a good job, then I understand why you would stick with him. In fact, I am not one to talk, as my doc is only marginally competent to treat Wegs. It just happens I'm doing very well with the straightforward treatment he has given me, which is about the same as many on here. There is a University medical center in my region that I could go to for people a little more experienced with vasculitis. And the docs themselves can consult with the top of the line specialists if they feel the need.

I wish I could tell you who to go to to get some answers you aren't currently getting. There is some sentiment on here that we should all have a naturopath or holistic doc, not to treat Wegs specifically, but to give us a more comprehensive approach to all we are dealing with, to treat the whole person instead of just separate symptoms. I personally haven't done this. I wish there was a branch of traditional medicine like that... actually I have heard of one that isn't traditional but is practiced by MDs, it is called Functional Medicine. A dear friend has sent me a book by such a practitioner, Dr. Susan Blum, MD, and it is called The Immune System Recovery Plan and focuses greatly on the diet and the gut issues that you mentioned in your posts, and also the effects of stress. I have just barely started reading it, but it might be something to research.

I can relate to your mental and emotional stress, depression, all of that, and I think many of us on here take things for that. It is so hard to know where to begin in dealing with the various aspects of our condition and getting the attention we need from the medical community, not to mention getting some understanding from people in our lives. Feeling very alone is common. That is what is so great about this forum, we never feel alone on here and there is always someone to listen and provide insights. I have learned a great deal more on here than I ever could from any doctor I've met so far. Also, Sangye has not been on here much lately, but if you send her a private message, I'm quite sure she will respond.

Best wishes to you for getting some answers and some relief.

[drz]

The doctor you like and trust can get a free consult from an expert listed on Vasculitis Foundation. It may not change anything in your treatment but wouldn't hurt either to get a second opinion. The consultation might yield an idea that could be helpful to you too.

[StephaniaWi]

Drz, I am not sure what my Rhuem would be consulting on though. I dont know what he would be consulting on my WG because unlike so many of you, I do not know all my blood levels and what is good or bad, or how he even considers my WG "remissed." I mean he told me I have fibro because of the tender points. I haven't always had these, I would say I noticed them 1 1/2 years ago and they have got worse to now where my shoulders hurt. Rhuem said last time I was dizzy May-June time that if it came back I should go to a neurologist but he did the basic tests and said I seemed fine there. I was thinking ENT, I know crystals in your ear can do this.

Are "naturopath or holistic doc" completely paid for out of pocket?

I ran into one of these and spoke with him at an exhibit and he said insurance doesn't cover anything and his rate is $300 an hour. I stopped to talk to him because he had a big sign about vascuiltus.

I have always thought the pain was from WG because when it first hit me, before I went into intensive care or my lungs were bleeding it started with awful joint pain and painful bumps on my elbows then progressed. Also when WG is active for me I am just a mess, everything is awful and when you are coughing blood, or your nose is gushing huge clots of blood, a little joint pain doesn't seem like that big of a deal. You have an all over feeling of grossness so the pain is one of the small problems.

The pain has been changing though and I do not know if this is WG. Now I do not just have joint pain though, now it is in my muscles. Like if you work out and are not used to it, the next day they burn. Also the tender spots. If my boyfriend were to try and touch my knee affectionately I would yelp out in pain. Those tender points are all over my body like that. This is how the rhuem came to the conclusion fibro because he did the full body scan, and probably some of the other things I told him. I believe it is getting worse because now sitting in my chair at work my upper back and neck hurt terribly. I have done every ergonomic adjustment and my job even bought me the most ergonomic chair but now my butt hurts after sitting for an hour or so. That never happened before and the pain is so intense in my upper back that I often cannot concentrate. I have went to a chiro in past years, once every four months or so for an adjustment. Ever since a car accident, but now that doesn't help like it used too. I just feel like I am ninety years old.

This dizziness though is my reason for posting. I have been to rhuem, dermatologist, allergist, primary care, and I do not know who is next. I am wondering if maybe the change of seasons is doing it. I never have had allergies but with WG it messes everything up, so maybe this is just new.

I would describe WG as just feeling overwhelmed when you are flaring, scared and afraid. I never knew what to do. I would research and look for people online with it because my doctor(s) didn't seem to be as urgent as I thought they should. Now, I feel like if something happens I have someone but again, he only tests urine/blood every 3-4 months, can't it get me in between that?

Every time another doctor freaks out about a different condition and sends me back to the rhuem stating it might be WG, it isn't. I seem to have all these issues and they aren't WG. I just keep going because I do not know what else to do. Maybe I should say forget the money and take Cymbalta, I am just afraid of another chemical in my body. Another addiction. If I lost my job, how would I afford it? There are cheaper antidepressants but the psych said this is specifically for fibro. Living in this much pain makes a person crabby. Makes it hard to concentrate. I want to sleep for 18 hours and then I am still tired. Since WG I generally have been fatigued but never this much constant pain unless I was in the midst of a huge flare.

Anyways thanks for listening (reading) overwhelming is the only thing I can think of to describe how I feel.

[Dirty Don]

You need to consider a different doc...seriously.

[annekat]

Sorry I didn't comment on the dizziness before... today I woke up a bit dizzy and I hope it is not a case of vertigo which I get very seldom, maybe once or twice a year. I'm pretty sure it is from something in my ear, as they are always somewhat congested, and when it is bad, I can only go lie down for awhile until it passes. But you say your ears look good to the docs, so I'm at a loss to attribute it to that. If an ENT hasn't looked at them lately, that might be something to try.

I, too, do not feel I could afford a holistic doc, naturopath... I don't even know if they are the same thing. I know there are people on here who see them, and maybe they will chime in. $300 sounds like a lot, way more than I'd ever consider paying, or be remotely able to, and I wonder if that is typical or if this guy was trying to present himself in a way that made him seem that valuable.

I also would not be able to take Cymbalta, if it were prescribed, at that cost. I have taken Zoloft, which seems to be cheap, and I think it did help, but it may be considered a lighter-weight antidepressant, I don't know.

I'm so sorry you are going through what you are. Some of us on here have successfully gotten SS disability. It is a process, for sure. Wegener's is on a list for special consideration in their system. But it may depend on your age and what kind of work you are currently doing. If you are working, they will think you can work and may not approve you. My head gets fuzzy just thinking about how convoluted it is.

Best to you, good wishes sent your way...

[annekat]

You need to consider a different doc...seriously. I am tending to agree with Don right now. I see you just had RTX, and maybe it hasn't had time to really work yet, but I have heard it doesn't work equally well for everyone. I also wonder if you might feel better if you were on some prednisone, which you say you aren't. Most of us would have a pretty hard time doing without it, until we are feeling good enough and able to get off it entirely. "Remission" is a subjective term, can mean something different from one doc to another, and not clear cut. If you are still on meds, you could be in a medicated remission, if the meds are working, or not. I think a fresh viewpoint on your case might be a very good thing.

[StephaniaWi]

I understand I need a different doctor but whom? That is where it gets fuzzy. I have been at my lowest before nose oozing blood clots, me on my knees thinking I am about to die and a highly accredited Rhuem cannot help me, or wasn't. Putting me on fast pred taper packs of 80mg,60mg,40mg which Sangye said at that time was probably a bad idea, and my new Dr was in agreement as I lay coughing blood in the hospital . Anyway when this happened, everyone said to me "Can't you find a specialist?" I tried, who do I contact, I do not have loads of money to take off work and drive to Ohio or something only to be looked at the same way all doctors look at me, "You have WG, that sucks take your prednisone, immunosuppressants, and your on RTX (which makes me a lucky one), you will be just fine" I am sorry if I sound jaded but I see a lot of doctors just trying to get paid, never really doing much of anything. At least my rhuem fights for me to get RTX and has advocates in his office filling out the proper forms. Each round of treatment is 40k billed to my insurance, I pay a small percentage and I have the RTX assistance card that helps as well. I also like that he is attached to one of our best hospitals. In case. There are things I do not like, like when I call him and he sends me to my primary care for something who thinks the rhuem should be helping and basically they argue through me the whole time I am not really getting help.

I think the reason I am off pred is because I tapered down really low and stepped off in May. So I was on it from August 2012 to May 2013 sometimes at very high doses. (the second time) I am sick of being fat and not able to lose weight, and people can say this or that about weight loss and anyone can do it, even people on pred, but if they were in my shoes, counting calories and trying to lose weight and gaining it, you wouldn't say it. This is why I went low carb, my doc said reducing them is one approach to pred weight gain. Which I never really lost any weight but I stopped gaining finally. (by the way I am not small nor ever have been, I have been plus size my entire life so I am not speaking of a 20lb weight gain, more like a size 14 to a 20 fighting and eating healthy, trying everyt healthy approach the whole time) I could go back on pred I suppose to reduce pain, but is that the answer? A drug that does major damage to my body when all my levels are low enough for my doctor to say "remission", my disease is controlled I guess is what I assume. Kidneys are perfect, no blood in the urine (for the first time in 3 years), liver good. If it was a secondary disease to WG, like Fibro, is pred the treatment? Not according to my dr, he said Gabapentin and maybe physical therapy. He did mention he was going to give me a slip for physical therapy and never did. I should call about that, maybe that would help.

I have been on Rituxan (again since the 4 bags initially diagnosed in 2010) Since November, every six months for 2 years, so I have had 2 of 4 treatments to try and achieve "remission"

I went almost a whole year when I first had the RTX, before I flared, that is what prompted the 2 year continuous treatment plan. I did have to fight my insurance over it. They denied it stating I should have CYC and possibly become infertile at 27. That was a beast of an appeal letter I wrote, of course "void of any emotion" all about the dollars it would save them to give me RTX. There is a big story about the ignorance of my insurance company, they didnt even have a rhuem look at my case, and the guy who decided to deny it admitted he almost no knowledge of GPA.

[annekat]

I wonder if there is a support group for people with WG or Vasculitis or even other rare autoimmune diseases in your area. I know, easier said than done even to go to something like that, when you work full time and feel lousy all the time. Also, I wonder who might be on this forum in your area who could maybe help with ideas for doctors and such. There is a link at top of page for the Weggie Map, and if they have put themselves on there, you will see them. If there is anyone even in your state, you could send them a private message.

As for pred, if your doc thinks you are in remission (which he could be wrong about, I don't know), then maybe you wouldn't need a high dose to help a little. I'm not trying to push it, just seems unusual not to be on it unless you are doing really well. I do understand about the weight gain and other issues, and it affects some people more negatively than others.

[annekat]

I also wonder if the VF could help you find a suitable doc in your area even if he isn't on their specialist list. I don't know if they do that. There is a tab on their site under Support for "Find a doctor" which leads to a listing of rheumatologists in your area, but I don't know that they are endorsed for WG by the VF.

I also wonder if there is a university medical school in your area that might have a rheumatology department where you might be seen. They would at least be aware of the need for knowledge about vasculitis and how to deal with it, and perhaps someone on their staff would have some experience with it and know where to get access to more resources. Just an idea. I can understand how lost you feel and am very sorry you are going through this.

[StephaniaWi]

Anne I do appreciate all your offerings, whatever they would be. My brain is messy. I used to be so held together. Life took a bad turn. :hug2:

[Dirty Don]

How far are you from Mayo in Rochester? Most of what you're saying sounds like someone is really trying but missing the mark with/for you. Doses are mixed up, a lot is going on for you...sounds like grabbing at straws a bit. Remission, as Anne pointed out, is a subjective and sometimes elusive thing for us. Most remissions are medical, some are really for real! And most of us continue on...

You need more direct and exacting help...it, despite any costs, would be worth your health and time and comfort to see or consult with someone who knows what is going on...'nuff said.

[StephaniaWi]

In my mind I would think they wouldn't be interested in me at a university or anywhere unless my vasculitis was active, which it isn't. The first occurrence was very severe where my lungs were only taking in about 40% oxygen by the time I made it to the ER. Granted I was vomiting and coughing blood at such an alarming rate I was filling clear plastic bags, the reading might have been skewed. The nurses eyes in the ER were big, and I would think they see that all the time. Maybe because I was in such high spirits, that I was finally at a hospital and not at doctors offices who knew nothing and kept calling me a spaz. This last flare we stomped on the vasculitis before it got out of control like that. I stopped coughing any blood way quicker and my lung x-rays were not all white and scary like the first time, still almost completely black with little inflammation. They didn't even give me breathing treatments.

You just shouldn't get to that point once you know you have WG is what I learned, if you feel sick and your Dr is not helping, walk into the ER.

[StephaniaWi]

I am about 4 hours away. I am not sure which division I would call though. W (http://mayoclinichealthsystem.org/medical-services/rheumatology)hen I click on Rhuem it gives a bunch of places, even some in WI.
Rheumatology - Mayo Clinic Health System (http://mayoclinichealthsystem.org/medical-services/rheumatology)

Again. I understand your stance on the matter but I am not sure what I am going for if my WG is controlled and the pain is from something else. Is hair loss common in WG? I mean, I have lost at least half my hair by now, that started this June.

I am more apt to think it is the levaquin, my Dr says all my blood and everything is good. In August he checked me for Lupus and some forms of arthritis and the nurse called me and said "everything is perfect"

Not that I understand why he was checking me for these things, he said he was going to run some tests and make sure. Maybe my other labs for the WG compared on my history were clean so he figured it was a secondary thing. That is another thing, he has every record since my first bout, since the computer system he uses is attached to the hospital, he is conjoined with it so he can even pull up my ling xrays and my initial diagnosis. Which I recently asked him to read to me. Which put me in a funk, but I wanted to know how they knew I had WG, I really never knew. I only knew I had to endure one of the worst things in my life in that a lung biopsy. Ouch.

[Dirty Don]

My one and only visit to ER was the same as yours...less than 50% oxygen, coughing blood, and all I remember was handing the nurse my insurance card then woke up 10 days later with tubes running alllllll over m'body!!! What! Point is, the first hospital had no idea, the 2nd hospital (I was moved to a hospital that could cut on my lungs cuz someone had the sense to 'sense' this was more than something common going on in my body) saved my life but still had very little inkling of what was happening. My 'slice' was sent to Mayo, they figured it out in 24 hours, I felt better, was released to rehab, etc. Then, I went to Mayo instead of staying with the hospital that saved me as they were willing but it was apparent they weren't quite up to the task. Mayo hit the disease hard, big doses, then I've been weaning since...still on mtx, 15mg/wk tho. So, my point, again, is get to docs/help who can and know they can help you...docs are not gods, docs are good mechanics with the human body...it's that simple...they do what they can do, and if they can't, I go somewhere where they can. This is facetious, but I abide by it medically: I am a Porsche, not a VW!!!!

[annekat]

I clicked on your link to Rheumatology at the Mayo Clinic in your region, and then searched Vasculitis in the search box at top of page. I came up with 7 results for the clinics that have interest or experience with vasculitis, some of which are in your state, I think. I know you feel like your vasculitis is currently under control, but this would be a start, to make sure it is, or for future reference, if you feel it isn't. I'm not sure that one of these or a university hospital wouldn't be interested in you if you don't have active vasculitis. They would want to make sure that you don't, and then might be able to help with where to refer you elsewhere in their system. I understand the "messy brain" syndrome you mentioned, and not knowing where to start, whom to go to. Maybe you need more guidance there from a medical professional no matter what exact field they are in. Maybe there are advice hotlines on some of these sites, or by phone. Best of luck in figuring something out that may lead somewhere helpful. :hug1:

[StephaniaWi]

Your story is scary, I can see it happening. It is all sort of surreal to me. Being in the hospital, trying to be strong while getting poked and prodded and extremely uncomfortable. You think you would be comfortable in the hospital, that they can keep you that way. I was so wrong. Miserable and that lung biopsy I thought I was going to die. They kept telling me you have to breathe!!! Trying to force me to cough pushing a pillow against my chest, and then I would hack up some thick chunky brown looking stuff. Telling me my lungs would collapse if I didn't breathe. Couldn't breathe, being shot up with pain meds every four hours, paging the lung surgeons because I wasn't breathing and was screaming at the same time from pain, making me take pain pills and shooting me up and when that wasn't enough they installed a morphine pump. Ahhhhhh! The whole thing was a nightmare really.

Completely understand with the mechanic analogy. I guess I need to find a specialist then to transfer to? Or is consulting enough, how exactly do I tell my doctor who tells me he has it under control and my treatment is working to call someone else because I want a second opinion? Are we assuming my pain is from the WG then? Even though he says it is not? I wonder when is the right time.

[Dirty Don]

It IS your right to employ who you want to work on your body! There is no right time, it's YOUR time...always your time now...remember, you are under control, but you have a disease that requires attention ALL of the time. I just returned from my new dentist...he understands AIs and how they affect what he has to do for me. I appreciate that...and it is as it should be. Did I tell the past dentist that I'm not with them or am leaving...NOPE...it's all about ME!

[drz]

My dizziness was caused by vestibular hypo function brought on by Weg damage to my inner ear which wiped out my hearing in right ear at same time. Some vestibular rehab really help me and I seldom am bothered by feeling dizzy anymore. I still have very poor balance and will actually start to fall over if I close my eyes or try walk in dark without visual cues or a cane.

It is hard to function and make good decisions about our health at times because of the meds we take and stress of managing an illness no one except a select few really understand how to treat. I drive six hours to Mayo every three or four months as part of their longitudinal study on managing Wegs. It is expensive to get there but its a lot cheaper than trying to cover an expensive ambulance ride and months in a hospital and nursing home again. The hospital co-pay alone for Medicare for just one admission will cover my costs of two trips to Mayo.

I also know that trying to maintain my health has to be my top priority if i want to enjoy any more time on green side of grass. Thus most of my money and time goes into doing so. I too replace any doctor who doesn't seem to share my priorities or if I think I can find a better one that will be easier to work with or better for getting me the care I need. I just interviewed one podiatrist who didn't make the cut and will try a new one next month. I am using two dermatologists right now and may keep them both since they seem to have different skills. I replace one ophthalmologist who didn't seem to have appropriate concern about my broken immune system and another one who seemed an arrogant jerk with a way too cavalier attitude toward giving good care to his patients.

It is our job as head of our treatment team to select the best health care professionals we can find for our care just like we try find the best mechanics to maintain our car. I wouldn't worry about finding a good holistic doctor since there is not much hard evidence they will contribute much to getting your Weg stuff under control. Sangye tried that for many months and almost died from it.

Mayo and Cleveland have the largest number of Weg experts listed on the Vasculitis Foundation Web site but there are many others too who may even be closer to you.

[Stephene]

I also have experienced awful pain in my hips, shoulders, knees and recently my lower back.It feels like it is in the muscle itself rather than the joint. It hurts to touch and ANY activity seems to trigger new pain right away.If i use my arm for example to fold 1 load of laundry I will have shoulder pain for weeks and cant use the arm for any activity. Last week I reached in my freezer and had instant pain in my lower back. For a week I was bed ridden and couldnt even move an inch. My husband would have to lift me from bed so i could use the restroom.I feared sleeping because I would move in my sleep and wake up screaming in pain. I finally was able to get to a dr and they upped my prednisone for a week and it went away. My shoulder and hips are almost always in constant pain.My dr said this is the WG. I did 4 rounds of Rituxin in early march/april of this year and I am in remission but havent actually had a new ANCA to support that.Anyways I have had no lung bleeding since August and overall the bleeding has mostly disappeared.At times I do get bloody mucus in the lungs but am currently on bactrim and started Cellcept last month.i will get more Rituxin this month if all goes well. My daughter took cellcept for her Microscopic polyarteritis nadosa which is very similar to WG. She had the name brand Cellcept and did very well with it.It was the only thing she tolerated before getting the Rituxin. I, on the other hand was only able to get the generic and i truely believe there is a differance.I get instant headaches that last the entire day as well as nausea and last week i fainted and was inches from the wood stove.I still am unsure if it was the Cellcept but will be seeing my Rhumy next week.I also take Gabapentin and Tramadol and Ibuprofrin and cyclobenzapine for the muscle pain. I have days where I just look at my husband and cry because I want to give up. It is a fight to battle every day with knowing your going to wake up just to face another pain filled day. But after seeing my daughter today without constant pain i know I will get there myself someday. She was 10 when diagnosed and she is now 21! She has been in remission long enough to have a baby this year.Thanks to the Rituxin.Without the Rituxin she probly never would have been off meds long enough to get that special gift. So there is hope and in time I know we can step over this hurdle and look back and pat ourselves on the shoulder.My daughter took 8 years to get off the prednisone and get remission.But she did it! And we can too :) I dont get on here too often but your story sounded soo much like mine that i just wanted to let you know that you are not alone and it is not all in your head.The pain is real and it makes me feel better knowing that others are here sharing similar stories.I am not happy anyone is sick but I know I am not alone nor is it all my head.I felt the same thinking maybe if i just did more the pain would get better or its all in my head but I am accepting that it is the WG and I hope after the next Rituxin it will start to ease.I have heard that many of the immune suppresants can cause muscle pain so I wonder if thats the connection. Anyways I hope you soon start feeling better.

[StephaniaWi]

Thank you for telling me your story. It is sad that we feel a connection because we are suffering. It sounds like you are worse off than me. I haven't been bedridden since initial diagnosis when I was really sick. I have had the four bags of rituxan, last one on aug 15th and I seem to only be getting worse with pain. I try to ignore it. Tell myself maybe if I do not think about it for a week straight it will go away but nothing seems to help. I keep trying. I wish I knew exactly what to do. My Rhuem doesn't seem to think it is WG making the pain anymore because my blood work looks so good. He said maybe the levaquin poisoning and I have exhibited signs of fibro for a couple years. The pain has changed now, and I am more exhausted. I take a b vitamin complex in the morning to see if it helps but I do not think it does much. I bought a mini-trampoline and have done it three times for 2 30 second bounce sessions. I do not want to over do it. I did it on Saturday before an event I needed to go too and it seemed to really pep me up. I am going to the chiro today to have a discussion on if he can take xrays and make sure nothing is terribly misaligned. Also telling him about the immune system and not stimulating it with treatment if possible. He is familiar with my disease and his adjustments 4 times a year used to do me just fine, they stopped working though. I am probably repeating myself by now but my brain is so foggy. That is the worst part, being foggy in the brain while trying to work full time, shop, cook dinner so I do not gain more weight, clean, I cannot do it all. I am failing. It is becoming a chore to walk now and I have to keep moving. I do not have a choice. My hair loss has not slowed either. Not much left, just enough to cover my scalp, very thin. Need to look into wigs. I do take mycophenolate every day and I think it is name brand, well it is $985 a month before my insurance kicks in so I would think so. I have been on it for 3+ years and the pain really could be from it. Last time I flared I was in a lot of pain but I do not remember it being all over body pain, just my feet and ankles, now it is my hips and femur bones, my wrists sometimes. I wish I could afford a hollistic dr just to see if they had ideas. I really cannot. I am going to keep fighting to see. I am so glad your daughter is doing well. That is great news. I have had periods, not many, but times where I felt sort of okay since getting this, and I am so thankful during those times.

[Dirty Don]

Sorry you're feeling so badly. When I was enduring hair loss, doc tripled my folic acid dose...the loss stopped and within a few weeks the hair was growing back. Hang tough.

[Stephene]

I am beginning to think i am relapsing.I have had my illness for a year and have never really felt back to normal.Always in constant pain but the lungs have felt so much better over the past month.No plugs coming up so that is a good sign and my night sweats had stopped as well.But yesterday i suddenly felt joint pain in addition to the muscle pain, nausea, bloody mucus, and i woke up soaked in sweat even with the fan on me at 30f outside .I see my Rhumy next week so I hope this isnt the big flare again.I gained about 30 lbs with the prednisone and haven't lost any of it even with the taper.I think alot of it has to do with the fact I cant do any activity.I am young and the weight really bothered me but this past couple months I have come to like myself for what it is.It doesnt matter to me if i have a nice cousioned tummy to hug my grand-babies with :)Only time the weight bothers me is when i catch hubby looking at skinny woman but he doesn't do it in front of me but I see his eyes turn all the way in the direction with his head straight so i wont notice. Thats when I start getting angry with my weight. The weight is a small price to pay to be alive and be with my family :) I have an awesome family and alot of support.I have 7 children ranging from 27 to 10.Every one of them help with chores and cooking and laundry and recently my 21 yr old thats also ill moved in so she helps me emotionally and she knows exactly what im going thru. God Bless that girl.She has so much strength. I could not imagine taking care of the house and children with this disease. You said you work and I have thought about you since I read your story. I don't know how you do it. The pain is so much. I am doing another round of Rituxan soon.When i seen my Rhumy last month he said I would get 2 more rounds this month.I cant wait.I have about a week of unbearable pain and nausea after the Rituxan but it did seem to work very well so I am hoping this round will get me back to normal soon.I love to clean house and I am picky about the bathrooms and even though the kids clean its not the way I like to do it so I am anxious to get my strength back to help out. It bothers me to sit in bed all day while they are working but I just cant do it and I do try when I feel a little energy but as I said ANY activity will have me in so much pain I can barely lift my arms so I have accepted the help but still feel guilty. I tried to bring a small armload of wood in the house today and I tripped on the sidewalk and the wood went flying and it felt like I had the wind knocked out of me.About 5 minutes later I felt awful pain in my back.My kids were mad saying I should have asked for help and my 10 yr old son said mom I was gonna bring some in this morning b4 school and I forgot.He said i am so sorry mom its my fault, if I brought it in you wouldn't have hurt yourself. Oh I felt so bad.I told him no its not your fault ,mom just wanted to help with something. Even at 10 yrs old that boy acts like a young man.Been that way since he was 4 yrs old.Screwdriver in hand taking door hinges off, lol. Always helping shovel snow and mow lawns ect. I have a great family.I am grateful every single day and I think about many here that don't have the help and it breaks my heart in a million pieces. Well here I go rambling on again.I do that alot. I am just so comfortable here and feel good talking.I have family but I have no friends at all.I have devoted my life to my children and didn't make time in life for friends so here I get to meet ppl and this feels great. I married at 15 and am now 26 yrs married to the same man! So I better sign off as I am getting off the subject.Have a great day everyone.

[pberggren1]

Well, it sure sounds like it could be a flare.

Whether one puts on 10 pounds or a hundred pounds it is a big deal to that person. I know 2 Weggies that put on over 200 pounds, now that would be hard to deal with. 30 pounds is not too bad, but I know what you mean Steph. Hopefully over time you will be able to get active again and lose some of that weight or maybe all of it and then some. The biggest thing is what you put in your mouth and how much as well. I lost weight just from changing what I ate and eating less. Were you overweight before Wegs? And most men do look when a skinny woman walks by but it does not mean he loves you any less or that you are not as beautiful as that woman. I can already tell you are a beautiful soul and I'm sure the Wegs has made you even more beautiful.

That is so awesome you have 7 children.......:thumbsup:

Your family are your friends and so are we. We are always here for you. I don't think I have ever known anyone to marry at 15. I know a few at 17 and one at 16 but not 15. Are you Catholic? You sure don't look that old.

Where is your pain mostly? What does your doc say about mobility and the pain?

And.....I forget, do you have a Wegs Specialist?

[annekat]

Stephene, I enjoy reading your story, although I'm so sorry about your pain and other WG issues that are affecting your life. But your family sounds so great, and I admire your spirit.... your hubby must be pretty good, too, for you to be married to him that long starting at 15... you two got very lucky with that! It is not common, I'm sure, when one marries so young, for it to last like that. And I'm sure Phil is right, most men can't help looking at attractive women; it is programmed into them. And there is such a thing as too skinny!

[Stephene]

i live in a small town and travel 90 miles each way to see my Rhumy. My Dr said the pain in my muscles is from the WG. I did notice the pain in muscles started after the rituxin.The joint pain is usually from a flare but the muscle pain is diff.My pain is mostly in the hips and shoulders.I am mostly always home and dont do much because of the pain.I did go to the store to get a money order and the next day the front of both legs felt like I ran a marathon.I am confident that by this time next year I will be feeling alot better.The first round of Rituxin did help but like I said I still am not back to feeling anywhere close to the energy and strength I had b4 but I am hoping this next 2 rounds will get me on the road to recovery!I was a much smaller figure before the disease and I dont really overeat.I dont eat much and my 22 yr old moved in last week to help me and the family.She is wanting to help me start a fresh fruit and vegetable diet.I am going to try and introduce myself to Kale.I have heard there is alot of health benefits to it.Its suppose to be very good at reducing Ovarian cancer.My mother died at age 43 from ovarian cancer so it is definitely something I want to do.I am seeing a gynecologist tomorrow as I am having alot of inflammation inside and hoping its just from this flare.I was up all morning with the painful vasculitis in my feet.Something I haven't had since my initial diagnosis.I will be sure to post an update after Wednesday when I see the Rhumy as well.Thank you all for your support.I love reading the posts. Yes I am catholic. My mother married my hubbys dad and she is the one who set my relationship up.So I was 14 when preg and delivered at 15 and married at 15 I would not want anyone to marry that young but in my particular case it worked out for us.I missed out on high school and driving but that was replaced by the love of my children and I wouldn't change that for the world.My daughter Sheena will be joining the group this week:) although she has Microscopic Polyarteritis Nadosa it is as close to WG as you could get and I think she would enjoy this forum.She is an active member of the vasculitis forum so maybe some have already met her there :) Hugs to all and I will be back in couple days to update.

[pberggren1]

I sure hope your visit to the gynecologist tomorrow goes well and they find you are okay. I also hope you can start to move around soon with little to now pain. Just sitting around all day is not good for your entire system. It really contributes to the deconditioning of your entire body. And introducing fresh fruits and veggies to your diet if you are not already eating them is a must. Don't live on them alone, we also need meat in our diet.

I am a little confused when you say your mother married your husband's dad? I am glad you have such a large and loving family.

We will welcome Sheena just as we have welcomed you.

We look forward to your next post.

[StephaniaWi]

I feel like I should come back here and provide an update for anyone clicking the end of this thread in search for answers. I went to a women’s health doctor when an urologist did a catheter urine sample and said I was doing the clean catch urine specimens wrong which was contaminating my specimen and causing it to read positive for a bladder infection I did not have. She recommended I avoid gluten, try an elimination diet getting rid of gluten and dairy. I did it. Gluten causes a lot more pain when I eat it, but it wasn’t causing the dizziness. I also went to an ENT who did every test, they all came back negative and he recommended a neurologist, said maybe I was having migraines. I did not go to the neurologist. I figured out since I posted this the dizziness is seasonal it seems. I live in a four season area and every time they change, I get all the symptoms headache, dizziness, everything. That strangely made me feel better knowing it was seasonal.

So I try to avoid gluten, which most readily available gluten free foods are chock full of carbs so it is hard, but I eat meat, veggies, and that is about it. I was doing better for the last six months I would say. I had rituxan again and all my blood work was normal my rheum was telling me. I also can look at my labs now, so I want to research which ones you guys look at when you are deciding how bad off you are. I still was in a lot of pain and now the Rhuem and womens health doctor had diagnosed me with Fibromyaglia. So now my diagnosis is Wegs, chronic pain, fibromyalgia, and I have it saying I was diagnosed with Sjorgens syndrome, which I didn’t know but I do have the symptoms so I guess. The womens health dr also found thyroid nodules, which were ultrasounded a couple of times and decided to biopsy, which came back inconclusive and I have to have the test repeated August 5th.

Like I said I was doing better, the dizziness was only happening when the seasons changed. I wasn’t chronically fatigued at all. Only had a bad day now and then. I was on very few meds. I was in pain but I could deal with it.

All of a sudden on 07-07-14 all hell broke loose. It started a bad headache, then started an icy hot feeling, like my body has been dipped in a vat of icy hot so I guess hot cold hot cold like chills and hot flashes, but they do not flash it just stays that way. No fever. Body cramps and aches like when you get the flu. I also started with a strange rash, tiny red pin pricks in various sizes not raised but it appears all over my body (not papura like when I was diagnosed with Wegs). Severe fogginess, fatigue cannot wake up, etc.

I figured I was getting sick so I waited until Wed and then called the womens health dr, figuring she would help since she is the one who most recently diagnosed Fibro and helped me with the avoid gluten (she was helpful when I was really scared and down I guess) I saw her Friday night and she sort of wigged out on me. She tried to get ahold of the Rhuem and couldn’t, saying the rash was vasculitis. It was not good. I have had 2 other doctors since then say it doesn’t look like vasculitis. She drew all sorts of thyroid labs (because I do have all the symptoms of hypo) and metabolic panels, urine, etc. All were normal. The family dr (second opinion upon her wigging out on me) thinks I have a virus of some sort (no stuffy nose, cough or sinus pressure that I can tell), the Rhuem on the phone (he is on vacation) took more labs and I just reviewed the results and they say I am fine.

So I have all of a sudden for 8 days straight a headache, chills/hot flushes, fogginess, fatigue, body aches, a rash. I am having a heck of a time working through it, all I want to do is crawl under my desk. The bloodwork is indicative of my wegs is not active, nor anything is wrong (2 separate sets of bloodwork/urine Friday and Yesterday) The womens health doctor fired me yesterday, said she is not the one to help me a rheum has to, thinks mine is not so good and recommended I go see some guy who cannot get me in until August 27th. I am confused because according to the American college of Rheumatology a rheum may diagnose fibro but doesn’t treat it, she is supposedly specializes in muscoskeletal disorders but I do not know of what, because it isn’t my joints that hurts my muscles (Wegs gave me awful joint pains) she just says she isn’t the right dr, my family dr says he isn’t the right dr, my Rhuem said no I do not treat fibro but I will make sure it isn’t your Wegs.

My boyfriend sees me struggling to keep hope I will get better and losing it and no dr will help me.

I have no clue what to do.

[godgirl]

Well, Stephanie, this is just weird.

Last night I posted a thread in General WG Chat entitled "Not feeling "right"..." Go check it out. I live in Madison and go to classes in Milwaukee two nights a week (only this summer - weekends during the school year). I crashed last Monday as well...literally crashed after lunch. Headache, cold, clammy and hot all at once. No fever. All sorts of body aches. My eyes are bothering me, too. No rash, though.

I finally cried uncle and MyChart-ed my Rheum last night because I feel so awful and it's hard to get through work. She got back to me today saying that she thinks I'm coming down with - or have - a virus! I also don't have much of a stuffy nose or cough. Some sinus pressure, but that could be my eyes. Said to go see the opthamologist if the eye symptoms don't get better. (I've got eye issues with the WG.)

So, I don't know what to tell you, but I'm wondering if there's a virus going around? Or maybe it's this crazy weather we're having this year. My sister also says that she has never had to take her allergy medication this far into the season, so... Maybe since some of your stuff is seasonal, that could be affecting it? I'm just kind of grasping at straws at this point. But I've got the same things going on...literally the same things.

Let me know how everything turns out. Maybe try to get triaged with the new Rheum? If you're in that much pain, maybe they'll get you in earlier. Or call your normal Rheum.

Anyway, let me know. PM me if you need to!

Jen

[annekat]

Hi, Stephania,
I can only relate a couple of things to my own experience. One, I do indeed get dizziness at the time of year that is worst for seasonal allergies where I live, and this year I had an especially bad time including some vertigo incidents. Two, I have never had the very dramatic purpura that I've seen pictures of on the web. But I do indeed have the small red dots of varying sizes, not raised, usually on my forearms, which I know are a form of WG rash. They happen when I'm particularly stressed or tapering pred, whether or not my blood work shows anything bad. They usually go away in a few days. And I've read of others on here having this type of rash, often on their forearms, but other places, too, such as the legs, belly, and breasts. So, these are just observations and may be very different from what you are going through, but I hope it helps at least a little.

[StephaniaWi]

Yes this helps a lot Anne, thank you very much. I wonder if it is allergy related, I did go to an allergist this last time and he didn't find anything (not that he had to find something for it to be allergies), but I had to have it ruled out for the dizziness. I then wonder if it is allergy related if allergy medicine would help. I was pretty desperate after doc appointment gone bad on Friday night, Saturday morning with no other meds in 16 hours I tried one of the zyrtec samples he gave me to see if the headache would subside but it didn't seem to help much. They trained me in the hospital to never take tylenol pm or similar because I shouldn't need it, I should take a plain benedryl so I take that every night since this whole fibro type symptoms kicked in and it helps me sleep through the night. If I do not take it, like forget or run out, I feel really bad the next day but I usually can shake it off with some coffee and exercise enough to get through take the medicine and sleep the next night, and feel way better the next day. I figured that out with the rhuem last time who said I need to sleep through the night or I will feel bad and he was right. I wonder what I can then take during the day that maybe would help with these symptoms and get me through the day but not tell me it is sleepy time.

The rash is nothing according to all the docs, it is like tiny red pin pricks everywhere and you would know better than me Anne so maybe it is Wegs rash (I have read a lot of your posts and know you are , I did have a very stressful month of June, very, and that is why I thought this was a fibro flare, didnt call the rhuem since he has stated he isnt going to treat it, my primary care doc will and called her, but then she said I need a rhuem and I am just on a hamster wheel. I guess I do not feel with as bad as I feel that my current meds are right and eating right and sleeping and all the self care isnt working so I would like a doctor to be involved. I feel hopeless right now like I will never feel better, at least with Wegs they gave me steroids and hope.

Godgirl we basically posted the same thing in each other's posts!

[godgirl]

Hilarious, right?!

i actually feel very relieved that you're experiencing this, too. Currently, I drive in to Milwaukee twice a week for class. I could have easily picked something up. (Ooooooo! Maybe I'm allergic to algebra...) It is just such a coincidence - allergens are sky high, crazy weather, and maybe something is going around.

At this point I'm going to try to ignore it. The only thing that worked for my migraine/headache was a combo of excedrine migraine and my prescription stuff (sumatriptan). But it only took the edge off. You could try the excedrine migraine. It's Tylenol, aspirin and caffiene. No NSAIDs.

The eye doc wants to see me this week, so I'll let you know how that all turns out.

I hope you get over this soon. Seriously. I know how much it sucks!

Jen

[annekat]

Allergy symptoms should be helped some by the immunosuppressants and prednisone that we take for Wegs. My doc thinks I shouldn't have any allergy symptoms because of this. I disagree, and so does my ENT, so he is the one I talk to about allergies and the meds for them. He says I can take Zyrtec, or the generic equivalent, twice a day, even though it says once a day on the label. So I do, and it helps. But I don't have headaches. Another OTC med I take is pseudoephedrine (Sudafed), which is a nasty drug, so I try to keep it to one or two doses a day, if any. It really helps open up the ears, which can be blocked by inflammation and cause dizziness that way. It might help with sinus headaches, also. For actual vertigo, with the room seeming to be spinning, I have meclizine on hand, which is the same drug as in Dramamine. But getting a prescription for it is much cheaper.

[BookNut]

About the rash....Are you eating ANYTHING or taking ANY meds that have artificial colors in them? I get a stinging rash whenever I ingest red #40, and yellow #5 makes my throat itch. The red never used to bother me - but has become steadily worse. I THOUGHT I was allergic to bactim - but had the same rash when I took a throat lozenge with red #40 and also when I started a new antibiotic that was pink and contained the dye. From my experience, it can start out as a very minor rash, and suddenly get much worse. Don't know if it is related to how much dye is in the substance. It turns up in all kinds of prescription AND OTC meds. Benadryl also has it. I have been taking benadryl for years with no trouble. But last night I got the tell tale, but very mild, pin prickly rash on my arms.

Anyway - there is often a dye free version you can get. The last benadryl I purchased is dye free - so I just tossed my old pills. Pharmacies can usually locate a dye free version of a prescription medicine. If they can't find it via regular channels, pharmacies or your doctor can have them made up special for you from what is called a compounding pharmacy. The one I have used is called Professional Arts and it is located in Louisiana. They are very efficient and very nice.

But do take a look at the food you are eating - anything packaged. These dyes show up in all kinds of weird places. Cereals can be the culprit. Also soda and other bottled drinks.

I hope you will find some relief soon. Any possibility of finding a group that treats Wegeners who could help you out? I have no idea where you live. I am going to the Cleveland Clinic soon because my daughter lives near there. You might have to assemble a new team of doctors if the ones you have are not getting anywhere.

Good luck!

[StephaniaWi]

I am in Milwaukee, WI and I have been told over and over I need a Weg specialist, it isn't that I disagree, I just do not know where to start. I am not on prednisone or mycophenolate anymore, almost a year now. I wonder if it would help. I wonder if anything would help. I am so fatigued and my brain feels like it is swimming in my head, but the headache for 9 days now is really getting to me and today is day 10 and I woke up with it.

I did try a plain zyrtec this morning, hope I can combat the drowsiness with coffee. I hate to be so negative but I am pretty hopeless right now, I do not feel like I can live like this. I see an older gentleman sitting on the bus stop and think how he has the energy to take the bus at his age and I am 27 and feel like I am going to die. I really do.

When I had headaches last time, before I gave up gluten and when I was in the downward spiral advil mirgraine helped every headache tremendously, but it has gluten in it. :ohmy: I gave it up to try and go gluten free completely and my headaches subsided. Maybe it was just the seasons turning. I do not remember having a headache 10 days straight before but I guess like Godgirl said our environment is going wacky on us. Anyone know where they do not have seasons? I will move there. I cannot take it.

Anne last time I described it as vertigo and I do have the whirling, brain is spinning like a washing machine, but the headache seems to be overpowering the dizziness this time, except when I lay down and close my eyes, then I notice the spinning.

Jen I have been considering doing another elimination diet, I did it before and all I notice was gluten causes pain. I have been thinking about doing a two week just meat, veggies and oil. No butter or dairy and no coloring. I have a guy in my office that turns all sorts of funky colors when he eat processed cookies or additives and he gets the weirdest looking rashes. I had a dermatologist look at the rash and she said it is petechia and it could be caused by a million things, even taking my blood pressure. I just found it strange I was blotchy looking with petechia and all the other symptoms started at the same time but she had nothing to say about it. It doesn't hurt or itch so she said ignore it due to the millions of reasons I could have it.

I do need new doctors. I feel so alone and afraid and I am having such a hard time getting through the days,my life is falling apart. I am working at half capacity at work because I feel so awful. If I do not go to work I do not even have a dr on board to write me a note because they all are pointing fingers at each other. I am afraid to go to a new rhuem because last time I tried that I wound up in the hospital. My rhuem doesnt give me an email or phone number, I am on my own during this. I can call or fax a letter for Mon-Thurs he is in, and he always says my bloodwork/urine is fine so I am fine, and he doesnt treat fibro. Then the womens specialist said I need to see a rhuem for my problems, then my family dr is clueless and says he can only help with simple stuff like my annual exams and pap. I have 3 drs pointing at each other. Am I allowed to get a new rhuem if my current one suppressed the wegeners to the point where I am not on any meds for it (aside from rituxan every 6 months)? What if it makes him angry and then he doesn't help me anymore and I end up worse off.

I am not saying I will not go to one of these two new Rhuems I booked new appointments with in Aiugust, these are just my fears. I also think if they agree the Wegs is suppressed and these symptoms and all the pain I live in day in and out is just fibromyaglia they will not treat me since Rhuems do not treat it. I guess all I can hope for is they can recommend a doctor that will actually help me. I hate the pain I live in day in and out, but I can deal with it. I just have to sleep well, eat well, and keep moving. This whole headache, extreme exhaustion, etc is what causes me to be so desperate. :crying:

[godgirl]

Oh, Stephania. I feel so bad for you. At least out here, I have docs that don't pawn me off on each other.

Are you with Aurora? Or a different group?

My suggestion. I work in medical billing (quality assurance). If you don't think you're getting anywhere, contact the Patient Advocate with your clinic/hospital/group. Do this ESPECIALLY if one of your docs gets angry and refuses to listen or something like that. You should be able to switch docs any time you want. Seriously. I know it's scary to switch, but a second opinion might be for the best. There are always ways around this junk if you can get some help. The Patient Advocate should be able to help you. If you're having a hard time getting in to the new Rheum, they might be able to help you, there, too. I would get on a cancellation list, or triage list, or something like that.

Another option? Go to the ER. If you're in that much pain, they'll HAVE to treat you. Especially if you're desperate. And especially if your family doc won't treat you for anything. Which is a bit weird. My primary doc (family doc) sees me every 1-3 months for checkups. She works closely with my Rheum, eye doc and ENT too. I can't believe your family doc won't help you out much. I know that he/she can only see you for certain things, but he/she should be keeping up with your dx and treatments. My primary doc is very involved with all of this.

Another suggestion? Go see a psychologist/therapist. I've been seeing one for years. And it is so helpful. Someone totally outside of my life that gives me honest advice - not stuff I want to hear. And also tells me when my thinking is wrong or distorted. When I see her, it's safe to cry, be weak, rail about how unfair life is, etc. It is really helpful. Seriously.

Keep us all posted. Praying for the best for you. Hang in there, my friend.

Jen

[annekat]

I feel very sorry for what you are going through. I don't know why medicine can't be more holistic, so they could treat the whole person, try to put all the symptoms together and then separate them out and deal with them, instead of the different types of docs always passing patients off on each other and then putting them out of mind. I wish they would all work together to get to the bottom of what is causing your problems.

I know nothing about fibromyalgia and don't have the headaches. I am also not gluten or dairy free. I'm just coasting along at a low level of Wegs disease activity at this point, not in remission, still coughing up mucus and getting fatigued. What you are going through is a lot worse.

It seems strange that there could be enough gluten in a pill of Advil Migraine to cause headaches. I wonder why they put it in there. As for seasons, some places may have less defined seasons.... here, they are less intense maybe than in WI, but still seasons. I lived in the Central Valley of California, and it had seasons, in terms of colder or hotter weather and pollens and such. I suppose someplace like Arizona.

Good luck.

[StephaniaWi]

Well I tried acupuncture for the first time Thursday night. I figure with as much pain as I live in on the day to day it might help. My insurance will pick up 20 visits so if it does help I can decide if it is something I want to try and budget. I didn't notice anything significant after one treatment but when the doctor put one needle in and asked me about a specific area I told her it was hurting, it did seem to reduce. I told them about not doing anything to deliberately stimulate my immune system.

Something changed on Wednesday, I do not know if taking all the fluorescent lights out of the fixtures above my desk Monday helped or what but I did start to feel better, I thought maybe it is allergy related and kept taking zyrtec once a day. The hot cold hot cold feelings went away and I wasn't so terribly fatigued I could get through the day. I was so happy for relief. I am out of zyrtec now, so I think I might buy a bottle and keep trying that since I am not sure what made me feel better. I didn't take one today or any meds and went outside for a couple of hours toodling around town and came home just feeling awful, I told myself I would take a twenty minute nap and ended up sleeping for three hours. I wonder why I can sleep for so long, like if it is fatigue or something else. I am really hurting badly today all over.

I do not know how much gluten is in the advil migraine but when the doctor said to do the elimination diet they said if I didn't eliminate all gluten I wouldn't know if it helped. I do disagree with that to a point because I do eat some from time to time and I do not notice a ton of inflammation. I usually eat it in breading when I just cannot resist something fried. If I eat like a bun or something, usually out of rebellion oh yea my ankles lock up and I have trouble walking in the morning so for me it doesn't cause the ibs type symptoms but it definitely inflames my body and I wish I hadn't ate it so I try to not eat it at all. I gave away my advil migraine when I found that out but with that ten day in a row headache I would have tried it, I would have tried anything.

I wish the doctors would maybe consider the whole picture too. I know about medicine side effects and if you are on one med with a particular side effect and then take another one with the same side effect it is now doubled that effect so I have tried a lot of different things. I gave up all my vitamins for six months last time I got desperate thinking something was in there. I kept a pain and symptom + food journal for a few months a couple different times trying to figure it out too and all I figured out was since the Wegs I am allergic to crab meat and almonds, which is so terrible because crab legs were my favorite food and eating low carb can use a lot of almond flour/almond milk, eating almonds etc! I ended up with chronic hives the dermatologist said and told me it would be a needle in the haystack to figure it out, I figured both of those out in a couple of weeks. Eat crab, get hives and terrible bathroom problems. Eat almond flour in a dish I a make, get hives and terrible bathroom problems. I do not know why he thought it was going to be that hard to figure it out.

I read all the time how people say that they have pain and other wegener symptoms even after their disease is controlled so I do not know what to think is from that, my Rhuem seems to think I should be fine. I have two new appointments set up with new Rhuems and I have to reschedule one because my job is sending me to El Segundo I found out Friday for two weeks, over my birthday and everything. It looks beautiful there but it will be two weeks of grueling work, I have to leave the 28th so I need to change three different appointments I made during this recent spat of illness I made out of desperation for help. I am going to probably see which one of these two Rhuems knows more about Wegs and try that for awhile. I just do not know what else to do right now.

Jen I did see a therapist and psychiatrist twice now, for about 6 months after the initial trauma I went through with getting the diagnosis and then again this last time I posted this initial thread because I thought maybe my pain was caused by something mental. The actual psychiatrist the first time only recommended ativan as needed, which I already had for a bad car accident years prior, and then this second time a different one went through a really long process of evaluating me and said I am not depressed or suicidal but that the type of pain I had would be helped by cymbalta, and I just read all the horror stories about it and fibro and that it often stops working and then you are stuck on it, hard to get off of it and my insurance wasn't going to cover as much of it and there was no generic I would be spending so much on it I wanted to try some more things, and then the therapist I saw the first and second time told me it seems like I really need a pain management doctor and no my pain is not mental, there is no way. I saw her for a month or so and she wasn't really helping. I do believe I would benefit from another therapist, I really have a hard time going to dr appointments with my current job situation. My Rhuem has already had to write my boss a few letters for the rituxan treatments and he always says she legally cannot keep me from going but she makes it so difficult and you probably know you need more dr appointments than a normal person and it is such a struggle. She makes me get an excuse when I have to leave even 15 minutes early to get the physical therapist (feldencreis) at 5pm and I was driving through all this traffic, I stopped going because it was such a fight and was adding to my stress. It isn't right and then I look like a sick person and weak, she doesn't get it. She compared my Wegeners to her ex husband leaving her. I need my insurance or I fear what will happen. My ultimate goal was to sell the house I stupidly bought before the Wegs hit and get a less stressful job with comparable insurance, but I am so weak and tired I cannot get it ready for sale and this has been going on for 2 years now, I feel trapped in the circle of work til the death to pay for the house, if I could just sell it I would be so much better off. It is a complicated situation I just have to get myself out of, and probably the biggest piece of stress other than my superstress job.

It would be different if I had a husband or kids to live in with me, but I have been paying for it for 4 1/2 years all by myself, and that is a lot of bills. It wasn't a super expensive house but I bought it with my boyfriend of 9 1/2 years at the time and we broke up about a month later. I had a renter that came with me from my apartment but that was only for a short time, I think 6 months and he moved on and got his own place, so yea I spend all of my money on a house I do not want and medical bills. Fun.

[godgirl]

Glad you have seen someone! And I feel your pain with trying to keep up on bills. I rent, but my sister is a roommate.

So how have you been feeling? I'm better, but still really fatigued. Maybe I DID only have a virus...

Jen

[godgirl]

Quick question. How long have you been at your job and have you applied for FMLA? (Family medical leave act. I have it intermittently. )

[StephaniaWi]

I have been off and on but the extreme symptoms like the hot and cold chills feverish feeling is mostly off. Today I feel like utter junk and I do not know why at all. I just took a walgreens Zyrtec to see if it helps. One side of my sinuses is slightly clogged up. I wonder if I have something more with the sinuses going on and they do not even care to check it out. It seems like the doctors always say I am fine, when I am not. I went to the neurologist and he ordered a mri and a mra, but they haven't called me to schedule it so the insurance company might be arguing with them. I still have the headache most of the time, sometimes it gets pretty severe. He prescribed amitriptyline (https://www.google.com/search?rlz=1C1KMZB_enUS570US570&q=amitriptyline&spell=1&sa=X&ei=e1zSU-CxKJWtyASc_IG4Ag&ved=0CBwQvwUoAA) and I am not sure if I want to take it or not. I have read about it for fibromyaglia treatment before but I just am hesitant until I read about it further and feel comfortable. My biggest fears with all these medicines is the trouble they cause your body when you go off of them. Like withdrawal type symptoms. I also know a lot of medicines are hard on your organs like kidneys and I know WG often gets the organs eventually so I do not want to take too many things. This doc was well versed on WG and he was saying my treatment options for headaches are very limited because of my wegs and that they constrict blood vessels and with Wegs you do not want to do that. Then he was naming all the other ones and how they affect the kidneys and lungs and whatnot so I was happy he at least knew what WG was.

I have been at my job for 9 1/2 years and yes I have the FMLA because of the trouble they give me. I had it when I was originally hospitalized and had to be on short term disability, it expired, then my boss was giving me a hard time and I had it redone.

It could have been a virus causing the really bad symptoms but because I still do not feel very well, it bothers me. I mean, I wish there was just some herbal oil I could rub on myself and poof feel better. Instead of taking medicines that are hard on the body. Most of which do not seem to be helping me very much, you know. I just hate being in so much pain and feeling alone with the pain, like no doctor really understands how bad it is, and is helping me cope. I do not know if they have therapists related to Fibro but I know I read Sangye wrote in a thread fibro is just a symptom of disease and if you do some things you can rid yourself of it. I do not know if I have done all of those things or not, or if it would work. I may have more than just that, but I know that my Rhuem said that fibro often follows autoimmune diseases.

The acupuncture did seem to help yesterday morning I woke up not feeling like a complete dishrag and I told her that last night when I went and she said make sure you do not too much. So today, I woke up and I feel real bad so I really do not know. I think I will stick with the acupuncture for a few more weeks and see if it helps me. I guess I am sort of desperate and if western medicine is failing me, maybe eastern medicine will help.

My rhuem and the women's health doctor who fired me are aurora, my family doctor and the neurologist are wheaton.

[StephaniaWi]

Updating this. I went to a new rhuematologist and he was very optimistic about my issues. He said Rituxan is a miracle drug and since they have been dosing me with that every six months I am going to be fine. Just fine. He also diagnosed Fibro, so that is three doctors now. Four if you count the neurologist. He referred me to a "fibro specialist" the internet says they are psychiatrists, but whatever.

Now, I have been reading the threads investigating other methods of healing. I am not on many meds now. I have the pain patch 5mcg of butrans for more than a year, gabapentin, and tramadol when things get really bad. That means no steroids, no immune suppressants (other than rituxan in the system) I feel like I am close to getting off all of the meds, if I wasn't in terrible pain. I am now very curious to try to heal "leaky gut" I have ran across this issue many times since getting sick and I believe there has to be something to it. When I eat gluten weird things happen. Could be the wheat as well. I thought maybe if I avoided it and then went back to it, all people have symptoms but that isnt true. If you have a reaction to it you do have some sort of sensitivity. My nose started running with clear liquid, I had bad waves of anxiety, I was in the bathroom non-stop, my throat became very sore. I rarely have any allergies so I took a zyrtec and an hour later all the symptoms went away. Kind of scary for you to eat some bread and your nose starts running and your throat gets sore.

Anyways they say symptoms of intestinal permeability are fibro, and developing food allergies. So I never was allergic to my favorite food crab legs or almonds but all of a sudden I developed bad hives, chronic a derm said. Also my stomach would wrench. So I had to stop eating those. Gluten caused the above mentioned symptoms but also I wake up the next day in a ton of pain. Really inflames.

I have weird acne, and it isnt steroids, and I didnt have much as a teenager so why now? I gave up nightshades two weeks ago, wow it is hard. No paprika, it is in everything.

The problem is all of these diets are overwhelming I have seen Anne talk about all the different ways, don't eat this, eat that, don't eat this you can eat that. Etc. Paleo Mom Autoimmune protocol seems impossible for me, but I know I have to get better. I want to start on supplements but I put all of them in my cart on a website people said you should take and I have like 30 pills and powders of supplements I will be taking every day. Doesn't seem healthy. I really want to try and help my intestines but I am confused. So many opinions. Western doctors have really failed me I have to try and help myself.

As far as the sickness I had in July, I had about 3 weeks where I wasn't perfect but I was much better. Tuesday of this week I fell ill again. Weak, muscle aches, pain everywhere. Headaches, just feel terrible. Sitting in epsom salt and praying constantly.

[annekat]

Actually, I don't think it was me that talked about all the special diets, unless you mean where I might have said that it gets so confusing hearing about them all because they contradict each other. I'm not on any special diet except that I have cut way back on any gluten lately, and have stopped buying bread. I think I'm feeling better since; there's less mucus and less coughing as a result. I'm eating more veggies, which is a good thing, and getting protein from eggs, chicken, fish, occasional tofu, and yogurt, a little cheese here and there, and peanut butter on rice cakes. So I'm breaking rules of some of those diets by eating some dairy products, and peanut butter. I have also just recently stopped drinking coffee because I've had some dizziness and vertigo over the last several months. It had stopped, and I'd been drinking coffee the whole time, but just recently it started up again to a lesser degree, but coffee was definitely making me dizzy where it didn't before, that I knew of. I'm sure the vertigo has to do with my ears, though the ENT is a little vague about it. But it's weird how these cause and effect and triggering things can change over time.

[StephaniaWi]

Yes sorry I meant this "gets so confusing hearing about them all because they contradict each other" you said something similar in a forum and I feel the same way. Eat dairy, don't eat dairy, eat eggs, don't eat eggs. They go back and forth it is just like what am I supposed to do?!? My rhuem that has me on the rituxan and has been seeing me this whole time says WG is in remission, I have no vasculitis (https://www.google.com/search?rlz=1C1KMZB_enUS570US570&es_sm=93&q=vasculitis&spell=1&sa=X&ei=Ku8WVLfbJpOtyATf5YCYCA&ved=0CBwQvwUoAA) symptoms anymore. He says I have fibro. He doesn't treat it and he would be irresponsible to treat me in my current condition. He says I need a good pain management doctor.

I think it is all fine and dandy they have kicked my WG in the behind for now, but what about the quality of my daily life? I am just on my own. I do not think there is a miracle pill that will fix it, but when I get really weak and exhausted, and sleep doesn't help. When I feel like I cannot call in sick to work or lose my job, yet my body doesn't have the strength to go in, that I had a doctor in my corner saying you aren't well right now but you will be. Here are some things we can try.

That hasn't happened. I have different doctors with different opinions and no one doctor to manage my care and be the prescriber of all the medicines, so they know what is going on. I have to try some things. I know gluten is bad. I live in Wisconsin so I am mad about giving up dairy but I already haven't drank milk because of sugar, so I have been switching all my coffee creamer and such to coconut milk. Cheese, stupid lovely, nom nom cheese. Anyways, I am going to try some of these things. Keep researching the leaky gut healing plans and see if I cannot get myself in a better place. I just feel like I have to have hope I can feel better one day. Sitting in epsom salt baths every morning just to drag myself to work, is no way to live.

[annekat]

Stephania, I should have known what you meant, that we are on the same page as far as being overwhelmed by all these diets and what we should or shouldn't eat. There are people out there saying we shouldn't eat bananas, but I eat one just about every day and am not stopping. Same for peanut butter; some are allergic to peanuts and shouldn't eat it, but not everyone, yet they act like they are bad for everyone. I do choose the peanut butter that you have to stir and has no sugar added.

Anyway, I'm so glad you are over your WG symptoms but so sorry to hear about the fibromyalgia. That sounds so miserable and is a condition I know little about and should research. I sympathize about being unable to find one doctor who can oversee your care and work well with any other docs involved. I think that is common with WG patients, too.

There is a book you may or may not know about by Dr. Susan Blum MD, a practitioner of Functional Medicine. It is called The Immune System Recovery Plan, and focuses a lot on diet including the leaky gut thing. It includes good sounding recipes. A friend gave it to me and I haven't gotten far into it, but thought I'd pass along the info. I know there are others out there promoting this kind of thing. I don't even know if fibromyalgia is an autoimmune condition, but I will soon google it and find out. I hope you find some relief soon.

[mrtmeo]

Hi Steph,

Just want to let u know that quinolone antibiotics are extremely dangerous and cause MRSA to colonize.
It is the mrsa that causes tendons to rupture.
They also, reset our GABA receptor sites, so if you are on gabapentin, you may have been put into instant benzo withdrawal.
My mom had this happen and her tendon started to rupture until I put colloidal silver on it and it stopped.

She had severe benzo withdrawal as well due to being on ativan.
She is also, on advair which is a steroid and a steroid causes the quinolone side effects to come on much later and the victim doesn't experience them until they are off the quinolone which is too late.
My mom also, got neuralgia in her feet from these and acupuncture helped quite a bit, but didn't get rid of the lumpy feeling in the bottoms of her feet.

I was able to get rid of the colonized mrsa in her nares using iodine nasal rinses 100:1 parts lugol's iodine 5% to distilled water with baking soda. She finally, tested negative for mrsa.