New to group...I'm miserable.

[dndvictory]

In April of 2008 I was diagnosed with Wegener's at Barnes/Jewish Hospital in St. Louis, Mo. I am also diabetic with severe peripheral neuropathy. I responded well to treatment and have done well for the last 5 years, until recently. Several months ago I began to have pretty severe pain in the muscles along the right upper spine and between the shoulder blades. I was also having more than usual leg weakness and much more than normal loss of balance. My rheumatologist took me off of Imuran and started me on Methotrexate. I immediately began having severe burning from my toes to midthigh, fingertips to elbows and all of my back. The methotrexate dosage was increased over a short time to 20 mg. weekly. The neuropathy pain and burning increased with it along with muscle cramping and the severe muscle soreness and cramping in my upper back. To shorten the story, my rheumatologist was out of town at the same time for a short while. I cut back on the methotrexate myself and the symptoms got better. As soon as my rheumatologist was back I was in to see her. Now, we have tried starting the Imuran again with a short break between it and the Methotrexate. Now back on the Imuran and the same thing is happening along with shortness of breath, more fatigue, and more loss of balance again. Anybody have any experience like this? The burning is miserable at times. My doctor has increased pain meds but not much is helping. I'm on maximum dose of gagapentin and also on oxycodone. I go to a pain clinic soon and hope to find some help there, but I don't know if they have any experience with Wegener's. Any suggestions?

[pberggren1]

Where are you located? Do you see a lung doc as well? I don't have any suggestions about this other than you need a top doc. Most times the neuropathy is something you just have to live with.

[dndvictory]

I'm located in Illinois, just north of St. Louis, Missouri. I've lived with neuropathy for many years. I actually had neuropathy prior to diabetes and Wegener's. My father also had neuropathy and was never diabetic. I've had all of the pain, burning, pins and needles, etc. I've never had anything like this. Intense, intense burning. I have a very good doctor. I also have a very good pulmonary doctor. I just wondered if there is a correlation to the autoimmune drugs I'm taking to cause this? I've read this forum for quite some time but have never seen anyone mention this type of problem and when I did a search, nothing came up. Thanks very much for your response.

[drz]

I have been on generic Imuran (azathioprine 175 mg daily) for past two and half years. I have serious neuropathy from diabetes which I have had a couple decades before the Wegs hit and made it worse. I can't take MTX due to kidney damage from Wegs. I haven't thought the meds had much impact on the neuropathy as it just does tend to get worse since it is a progressive disorder. Has your pharmacist done any search to find out if this is a possible side effect of azathioprine or have you search about it on internet? Your history suggests both MTX and aza might be making it worse, is that right?

[dndvictory]

Hi drz. Yes, that's what I'm wondering. I had no problems with azathioprine for 5 years. Then these problems began. Once I began the methotrexate the super intense burning began. I've lived with the neuropathy symptoms since early 1980s. All of the burning I've had does not compare to this. When i cut back on the methotrexate the burning got better until starting the azathioprine again. Now its as bad as the methotrexate was in just a few days doses.

[Dirty Don]

Welcome dnd...sorry you have to experience this pain...IF in fact it is the drugs causing the pain, then I would say, as my doc has threatened me many times if the current drugs didn't work, you are a candidate for rtx...last stop on the WGs train...best of luck.

[Auntie TooToo]

Howdy from Texas!

I am both newly diagnosed as of 4/2013 and newly accepted into this forum. I was reading your post since I'm home sick today and while I don't have any words of wisdom being new to this life, I can relate to the pain. As a sufferer of osterarthritis as well, it seems that the Weg's exacerbated the area's affected; making them even more painful. I often get nerve pain that travels down from my lower back into my toe's, drawing them up/down; the pain is so severe that I can't move my foot and have literally cried out in pain during the night when it has happened.

Haven't approached any pain management as of yet .... just really don't want to even think about any more med's until I absoutely have to. So, I currently am sitting here with my tens unit hooked up on my lower back which seems to be one of my worse areas affected. I never want to take it off as it does give relief along with my chiropratic visits and massage therapy ... don't know how I would exist without them! I just wish that my insurance would cover more visits; at this point they will only allow bimonthly visits and with all the medical costs that come with all the medical care and medications for Weg's patients, I honestly can't do it without insurance.

Take care of yourself ....... hope your doc's find you some relief.

[annekat]

Welcome to the forum, dndvictory. I'm very sorry you are in such pain. I can't address your issues like some others have already done. But I want to say that if you stick with this forum, continue to share whatever you want, ask questions, and read the experiences of others, you will feel a lot less alone and at least somewhat better. I hope they figure out what is going on and things improve.

[NikkiNicole]

I second AnneKat! This forum is a mental life-saver! Everyone here is affected in different ways and while something may be odd to one person, it's perfectly normal to someone else. I have had so many things answered for me when I couldn't reach the doc (weekends) and instead of panicking, someone here has been through it, it's nothing, etc. I love this place.
Welcome! I hope that you begin to find some peace soon.

[whatthewhat]

I just want to throw out there that rtx is very commonly used by the rheumy clinic we work with. I understand & appreciate that you like & value your doctor, but unless they have lots of experience with WG's. & are on the front lines of WG'S treatment protocols then I really hope they are partnering with a rheumy who is.

[Psyborg]

Hi drz. Yes, that's what I'm wondering. I had no problems with azathioprine for 5 years. Then these problems began. Once I began the methotrexate the super intense burning began. I've lived with the neuropathy symptoms since early 1980s. All of the burning I've had does not compare to this. When i cut back on the methotrexate the burning got better until starting the azathioprine again. Now its as bad as the methotrexate was in just a few days doses.

Might be a dumb question, but have they checked for Shingles? I would think that in theory increasing your anti-immune drugs might strengthen that virus. Just speculating based on the burning you are talking about.

[dndvictory]

Thank you everyone for your comments and well wishes. I didn't think of shingles. My brother had shingles several years back. I'm going to question my doctors about it. Thanks again everyone. I go to a Pain management clinic Thursday also. Maybe some relief is in sight.

[aussiefella]

I have posted this on another thread; seriously have a look at your diet. These drugs just keep us alive and in my opinion miserable;a change in diet will make a huge difference. And do look at the Marshall Protocol.

After a change in diet I am now on NO chemo drugs and have reduced my prednisone from 75mil to Zero; after having symptoms like coughing up blood and severe joint pain. Enough from me all the best and keep your chin up!

[dndvictory]

Thanks aussiefella. I am certainly going to look into that. I wish everyone out there with this horrible disease to one day awake in the morning with the wonderful realization that this disease is gone, forever.

[Auntie TooToo]

Sounds wonderful ... so happy for u as these drugs make an already miserable situation only worse! I had already been researching diet alternatives along with what I thought was a healthy diet [i.e., lots of veggies, fruits, water, etc} and the only thing I have been able to find thus far was references to following an "anti-inflammatory" diet which I am trying to follow to see if it helps any. Hadn't come across your reference ... but I will most definitely be researching.

Thank you aussiefella!:rolleyes1:

[Auntie TooToo]

Oh dndvictory ... what a wonderful thought for the day ... disease gone forever!!! During a difficult week, I needed that thought as I am sure each and every one of us does!

[aussiefella]

Indeed Auntie, I hope I am not making people feel worse here but I seriously believe that modern medicine really does not have the answers. As I have said my diet and previous lifestyle I think contributed to this disease. During my treatment my wonderful wife thought I needed beefing up and consume plenty of food and suggested I eat all sorts of stuff, bread deserts, ice cream etc. The medico's recommended I drink 3 liters of water a day. By chance I stumbled on this brilliant nutritional pharmacist called Ben Fuchs, he does a radio show in the US called the brightside, his web site is brightsideben.com. Ben is passionate about his work, he says that modern medicines roll is to keep us alive by selling us drugs. He goes on to say that ALL conditions can be reversed; depending on the severity and; ALL diseases are attributed to the digestive system. I took all he had to say on board and changed my diet dramatically and the rest is history. Also I got a water ionizer as when I was drinking the water I smell of the chlorine was huge and apparently the fluoride is bad for you also. So little did I know that all the food I was taking along with water was making me worse. I am 5'7"; my fighting weight before the disease was 72 kilo's I went up to 86k's and now 70. With this new healthy lifestyle and I get my vitamin D level sorted out - Look out all of You. I hope this helps some people, give the diet idea some consideration, check out Ben Fuchs and the Marshall protocol but do not give up and Keep Moving!

[Auntie TooToo]

How true Aussie! While modern medicine is at times a necessary "evil", I personally feel that there are alot of things that we can do to help ourselves and must be balanced in doing so. I truly believe that our enviroment, the things in our water and the choice of foods that we eat all definitely affect our bodily systems. Alot of the problems today however, is that the lifestyles of so many make "healthy" eating difficult [not to mention expensive]. Former generations did not have near the health problems that we have to deal with and they affect babies, young ones and older ones alike ... related to enviromental damage, I would say so!

But such is the battle of this specific disease ... must keep moving, can't give up and just sit closed up from reality!

[Dirty Don]

Former generations did not have near the health problems that we have to deal with and they affect babies, young ones and older ones alike

mmm, scuse me...want the Bubonic plague, want to drink out of a river for washing and bathing, ever cut yourself and bleed...to death cuz there was nothing to kill the bacteria, wanna run down a deer and eat it raw? Well...c'mon...we are simply an evolution of what was...and things have become more complex simply cuz we think we know more...I agree with simple, I don't agree with grabbing whatever 'seems' like a nice try to affect our disease or anything else for that matter. Validation and stats are necessary, not hearsay and a good sales pitch...VENT!! LOL...reaching for my coffee again...****, it's cold...sighs...

[Auntie TooToo]

Didn't mean to offend you Dirty Don by no means ... I wasn't referring to such plaques you reference by no means! Modern medicine and invention has come a long way to assist mankind. However, and this is my personal opinion and belief, that the effects of alot of the means [aka: pollution, greenhouse effect, etc] continues to plaque mankind and advances the sufferings in this world. That was all I meant to say ... again, sorry if my words were offensive.

[Psyborg]

We've got several alternative medicine practitioners on the forum. From their experience be careful thinking the disease itself can be cured holistically. Certainly a better diet can cause no harm, and will help you significantly. But Sangye posted specifically of nearly dying trying to avoid the harsh medications initially. In an active cycle you have to be focused on beating the flare. Again not saying diets can't help, but please be aware that they are not a cure either...unfortunately.

[Dirty Don]

Not offended Auntie (I love saying your user name - wife thinks I'm bonkers...SILENCE! I keeeeeel U!), this is an open forum with basic rules: respect, willing to hear other opinions, and so on. Some of us have strengths, some have weaknesses which can be exposed on here, then there's me...a general irritant, sometimes humorist, and a general Weggie of immense ego who's been slapped down good about 2 years ago...have learned a lot since then! Never an offense taken...ever! Best to you!

[aussiefella]

What an odd post, so do we keep on chucking down the big macs with fries and coke with 9 teaspoons of sugar? I am not sure if I have the drift of this post correct. I have been all sorts of chemo and immune suppressants; leave me off the chemicals thanks!
On none now and that's the way I like it.

[pberggren1]

Veggies, just veggies....no coke, no McDs.

[whatthewhat]

These discussions about diet etc are interesting to me (as long as they stay respectful.) In our case, we had a low-meat, low-gluten household, with clean water, no drugs / alcohol / tobacco, minimal toxins such as cleansers, lived in a rural area without even traffic lights (in the middle of a state park so very little environmental pollution,) incorporated spiritual health as a daily part of family life, and were big on exercise (no t.v., no video games basically.)

Sometimes, disease happens. Even to a clean-living, happy, strong 14 year-old who snacked on salad w/out dressing & ran 5-10 miles a week.

[Dirty Don]

What an odd post, so do we keep on chucking down the big macs with fries and coke with 9 teaspoons of sugar? I am not sure if I have the drift of this post correct.

You probably don't. Suggesting an 'odd post' is pretty odd in and of itself. As for McD's and such: choices made, products proffered, situations necessitate - the stats are against 'healthy' lifestyles. Not to say such a thing isn't good for us, but not all have access, education, nor desire to do such. As individuals, we can only do what is needed...perhaps others will take heed...

[drz]

Environmental pollution is everywhere, even at the South Pole. It is just the levels of pollution that vary, not the existence of it. There is not air without measurable pollution in it. I just read a report that much of drinking water has traces of a lot of meds in it cause the treatment of our drinking water cannot remove the traces of various meds we take and only a small portion of the drugs we take are actually absorbed by the body, the majority is excreted and in the drinking water downstream. In the USA we and Canada are the only major food producing countries that allow genetically modified plants to be used for our food without our knowledge. We don't know if GM food is safe or not since there has not been adequate research done and also much of our GM food is rather recent, but most other countries in the world are being more cautious than us about allowing it into their food supply or even into their countries.

Why are autoimmune diseases becoming more prevalent recently? My guess would be it must be some environmental factors because what else has changed in last decade or two?

[Psyborg]

What an odd post, so do we keep on chucking down the big macs with fries and coke with 9 teaspoons of sugar? I am not sure if I have the drift of this post correct. I have been all sorts of chemo and immune suppressants; leave me off the chemicals thanks!
On none now and that's the way I like it.


More power to you Aussiefella :) If the lifestyle changes keep you in remission I'd certainly say they have great value. I just think it's critical to remember that if you get a flare up you will most likely need the chemicals again. It is certainly not ideal, and quite honestly some people who go into remission probably never flare again. I think my only point is that some folks are very health conscious here and still have to deal with frequent flareups...unfortunately the one thing that we can always say about the disease is that it works different for everyone who gets it.

[dndvictory]

Sorry I've been gone so long without any responses. I see good ideas from you all for different treatments. I lived a healthy lifestyle. I lived in a rural area, walked 4-6 miles almost daily, training dogs, as a hobby. Before I forget, the pain clinic did nothing for me and that's another story for another time. The burning has been better. I think I'm adjusting to the azathioprine. I still have a little more than normal burning, but it only lasts about an hourafter taking a dose. I can live with that. A rheumatologist my wife use to go to wondered if my wife and I had been exposed to something, together. My wife has RA with possible lupus. We use the same rheumatologist now. I guess you could say we like doing things together. That's meant as a joke, but we really do. Ooops, gotta go. The Cardinal x Brewer baseball game is on. I'm a Cardinal fan. Thanks again. I'll be back. Nice folks here.

[Donna-from-Philly]

According to my docs methotrexate has to be followed up with pulmonary consults. The pain clinic should be able to help. They have me on lyrica for my neuropathy and it works well.

[Barbara N]

I'm located in Illinois, just north of St. Louis, Missouri. I've lived with neuropathy for many years. I actually had neuropathy prior to diabetes and Wegener's. My father also had neuropathy and was never diabetic. I've had all of the pain, burning, pins and needles, etc. I've never had anything like this. Intense, intense burning. I have a very good doctor. I also have a very good pulmonary doctor. I just wondered if there is a correlation to the autoimmune drugs I'm taking to cause this? I've read this forum for quite some time but have never seen anyone mention this type of problem and when I did a search, nothing came up. Thanks very much for your response.
Neuropathy has been a beeg problem for me and my student going through cancer treatment. We have forund several exercises on the horse that actually get rid of the syptoms of neuropathy. I am doing a study of the benefits of riding therapy and pain relief- It isn't regular riding therapy, it is something new that I have been working on for several years and it a series and stretching and relaxing using the horses muscles to work yours. You breathe with the horse and put your faith in the person in charge of the horse on a long rope on a circle and just let go. you feel yourself breathe with the horse and do a series of exercises depending on the problem from neurpoàthy to clearing liquid from the lungs, getting rid leg cramps to opening the airways making it easier to breathe. It really works and has been able to lower my blood levels in some cases almost to normal.Some doctors are finally taking an interest in my new therepy. I just hope it can work for others the way it has for my friend and myself. It really helps balance and coordination giving you a more elegant stride.

[Alysia]

Neuropathy has been a beeg problem for me and my student going through cancer treatment. We have forund several exercises on the horse that actually get rid of the syptoms of neuropathy. I am doing a study of the benefits of riding therapy and pain relief- It isn't regular riding therapy, it is something new that I have been working on for several years and it a series and stretching and relaxing using the horses muscles to work yours. You breathe with the horse and put your faith in the person in charge of the horse on a long rope on a circle and just let go. you feel yourself breathe with the horse and do a series of exercises depending on the problem from neurpoàthy to clearing liquid from the lungs, getting rid leg cramps to opening the airways making it easier to breathe. It really works and has been able to lower my blood levels in some cases almost to normal.Some doctors are finally taking an interest in my new therepy. I just hope it can work for others the way it has for my friend and myself. It really helps balance and coordination giving you a more elegant stride.

Hi Barbara,
wow, your riding therapy sound just amazing :thumbup:
I wish I could come and try it.
what is most inspiring is that you are planning and doing it from deep inside you, from your core that knows what is really needed. it is so special.

[Michael Bell]

Hi Barbera, at the college where I work our equine department have introduced riding theropy for people with emotional problems, asbergers and to help build confidence in young people who have difficulty socialy. The results are fantastic as are yours. Keep up the good work and spread the word.
Michael

[dndvictory]

Sorry I've been gone so long again. I've been a little bitter lately. I have quite a lot of problems in my lower back now, also, compressed and bulging discs at all levels. What really angered me was I went to a pain clinic here. Filled out health history and sent it in to them several weeks before I went. Wegener's was listed at the top. The day of the appointment I also had to give another health history at the pain clinic. I should back up a little, I had an MRI on my lower back several weeks before going, also. The doctor, at the clinic, finally came into talk to me. He started telling me about the injections he would give in my lower back, he felt along the vertebrae in my back . While talking, I mention I had the Wegener's. The room went dead silent. The doctor looked at me and asked "What Wegener's? Oh, you mean Wegener's granulomatosis? I told him yes and the room got dead silent again. He told me to wait just a minute and he left the room. He was only gone not more than three minutes, came back into the room and told me there was nothing he could do for me. What in the world changed in three minutes? Needless to say I was angry. One, he obviously had no idea what my health history is and two, why in the world would this so called reputable doctor refuse to treat me after realizing I had Wegener's. I've been angry since, and I still get angry when I think of it. There's enough to battle, much less having to battle doctors that are suppose to care. There's been a few more things concerning doctors that I'm not going into but I'm sick and tired of them. I have insurance, I pay my bills, I'm a compliant patient, but an angry one, very angry.

[Alysia]

Hi ,
you are so right with your anger. it is even seems unethical the way he treats you. maybe you should complain to ombudsman. dont give up on insisting to get what you deserve to get. you are not alone. we are with you :hug2:

[annekat]

I agree your anger is entirely justified... I don't understand the attitude that Wegener's is such a scary thing that they are afraid to treat you for anything whether it is related or not. Are the back problems related to Wegs in any way? Do you have a Wegs doctor who could help you by talking to the back doctor or could help you find someone who would treat you? These may be naive questions. But I know that people on here have been treated for all kinds of things, whether Wegs related or not. You have my sympathy and I hope you are able to resolve this soon.

[dndvictory]

Thank you all. I just can't understand this . I told my primary care doctor about it when he asked how the visit to the pain clinic went. He had received the pain clinic doctors medical report. When I told my primary care doctor what happened, he just got quiet. Doctors usually won't say anything bad about other doctors. I'm just frustrated.















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[drz]

Thank you all. I just can't understand this . I told my primary care doctor about it when he asked how the visit to the pain clinic went. He had received the pain clinic doctors medical report. When I told my primary care doctor what happened, he just got quiet. Doctors usually won't say anything bad about other doctors. I'm just frustrated.
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They should be able to give you a good reason for their view or at least the excuse they gave for not accepting you as a patient. I know there are many treatment options that are not appropriate for me due to the damage i have from Wegs and the other illnesses I have plus the meds I take.

[dndvictory]

I agree. I don't know why a reason wasn't given to me, but there is one thing that really bothers me. I sent in a medical history two weeks before the pain clinic appointment. Then, the day of the appointment, at the clinic, a tech went over my medical history again and entered it into one of their computers. The doctor had no idea what my medical history is when he entered my room to speak to me. I doubt he even knew what I'm allergic to. If he had read about either, he would have known I had Wegener's. That's scarey. A doctor going to treat a person without knowing their medical background and I have more diseases than just Wegener's to deal with. Then charged my insurance $728 for doing nothing.

[pberggren1]

This is just horrible victory!!!! And then the doc charges you that much for just a visit?....TOTAL INSANITY AND BULLYING!!!!

[annekat]

Between you and your insurance company, maybe you can contest that charge. It is outrageous! I wonder if there is an agency in your area that can handle grievances such as this.

[dndvictory]

I've wondered that myself annekat.