New WG patient

I will try and get it all in one post, as I see a lot of you want details (as do I).

Name: Mark Reinhard
Age: 38
Live in: Green Bay WI
Job: Purchasing Leader (office)
Diagnosed: 3-1-10
Doctor: Marlon Hermantanio – Rheumatologist (says he treated 5-6 WG case)
Second opinion: Not yet, but efforting

How it started: Early November of 2009 I started with cold symptoms, no cough, just runny & congested nose. That got worse and worse until I was completely clogged. I went to see my regular doctor(December 23) and she gave me some nose spray and told me to take calritin-d. Tried that and nothing. Went back in 2 weeks for follow up and was sent for a CT scan. Results for the scan came in and was referred to a sinus specialist. The sinus specialist (Dr. Diane Mayland) put me on a taper dose of Prednisone for a week and also gave me some spray and amoxicillin. That brought the inflammation down until the prednisone was gone. Went back end of January and was told that sinus surgery was my best option. Ok, so this has been bad but I wanted to put it off for a few months as I wanted to finish bowling season and coaching bowling and basketball.

Was going to have the sinus surgery early April. Then my sinuses really got bad and I said “ I have to do this now” and set my surgery for 2-24-10. On 2-11-10 I started to feel tired and very sore legs and hips at work, early in the day. I left about noon and went home to bed. Next day, I didn’t feel any better, so I worked from home. Saturday, I thought I might have strep, so I went to urgent care. Not strep, but gave me some prednisone and some pain killers. The next week was hit and miss until Thursday I was not feeling well at all. Very sore and fatigued. I woke up Friday (3am) and felt as if I were run over by a truck. My wife took me to the ER on Friday AM. They put in an IV and gave me some pain meds (ok but nothing to write home about). After chest x-rays, blood work, pee in a cup and exam--- go see a Rheumatologist. Ok, I am 38 how can I have arthritis? My wife and I left with a scrip for pain meds, a referral and a wonder if this ER doctor was wacked out. Saturday and Sunday were a little better because of the pain meds, Monday about the same but my wife was pissed because I was not feeling better, so back to the ER.

So I go back through all the same tests and an EKG, and the answer from this doctor---Go see a Rheumatologist. Ok, done. We set up an appointment for the next day as now my sinus surgery is only 2 days away. I go see DR. Hermantanio, and he gives me the once over. Tells me it could be 20 different things, and sends me for a blood test . Come back in a week.
Go in for sinus surgery, on Wednesday, walking like a 80 year old man. Get there at 7 am because the first CT was not good enough ($$$) so the need a new one (Striker Scan). My card says surgery scheduled for 9:55. Nurse comes in at 9:45 and we ask when I will go in to surgery and she says 11:45, and the doctor is running late. Great. So lay around and listen to all the other people get prepped for surgery, good times. Now, done with the surgery and recovery time and out of the hospital at 4pm. Go see the sinus doctor in a week.

Thursday through Monday, still not feeling good. Joint pain, fatigue, sinuses ripped up. I think that now the sinus thing is done that all of the rest of this will go away. Then Dr. Hermananio calls, and leaves a message on my voice mail, “your blood test came back positive for WG, we will discuss more tomorrow during you appointment”. Wham, right in the face. So guess what I do? Run to the internet, find out that this could kill me, and start planning my funeral. I wait until my wife gets home to tell her and we both spend an hour crying on each other. (Her mom died of kidney failure, lupus about 6 years ago)

So, now it’s Tuesday and my wife and I go to see DR. Hermantanio. We go In with a lot of questions. He explains the disease (limited at this time), tells me the treatment plan, and sends in the scrips. We ask how many cases he has had—5 or 6 , ok not his first go around, good. We ask a lot of the other standard questions and get the standard answers. Ask about a second opinion, he says fine, where do you want to go, we say we will get back to you. Now my wife asks a few questions about remission and if this is like lupus, and the doctor was short with her and didn’t look at her, she was sitting behind him. Now my wife thinks he’s a quack and really wants me to seek a second opinion. I said that’s fine, you set it up. To me, even though he is not very personable, he seems to know the disease and how to treat it.

Alright, here is where I am today: been on the meds for a week and a ½ and it has been up and down. Most days energy until noon then out of gas. If I push longer, I am shot the next day.


Med list:
Prednisone 40mg twice a day
Azathioprine 50mg twice a day, the 3 times in another week
Bactrim DS 800/160 twice a day
Gabapentin 300mg 3x a day
Also taking, calcium supplement, acid blocker and fasomax(1 every 2 weeks)
This sounds like a treatment that others have been through, so I feel comfortable right now. Doctor says it may be 4-6 weeks before I feel noticeably better. I hope I start feeling better.

Now for questions:

Anybody have any success with a prescribed sleeping pill on these meds?

What do you take for pain?

I missed my afternoon meds because I was vomiting, and felt like that bus ran me over again, sound normal?

Any suggestions on how to beat the fatigue?

Does it get better with time?

I feel about 75% in the am and about 50% after noon, what can I expect and when?

If you read all of this, thank you. I have read a lot of yours and plan to be here often. I hope some of you can weigh in on my situation, I look forward to it.

Mark Reinhard

Hi Mark, sorry you had to come and find us.

First thing I would say is that you really should be treated by a vasculitis specialist. There are people who will come along soon to tell you how to find one. You also need a positive diagnosis, this can't be done by blood tests alone, they will only give an indication that you may have Wegener's, but there are other diseases out there that give similar results. A positive biopsy from your nose would be good (perhaps not the right word? ;) )

The medication you are taking is quite mild, you might get away with this because your symptoms are fairly limited and it is early days, but the consequences of Azathioprine not working are quite serious. I went from sinus problems and joint pain to full blown renal failure in two weeks! You can see why a specialist is a good idea.

As far as prognosis - treated correctly, you have a very good chance of going into remission (there is no cure) and living a fairly normal life. I only say "fairly normal" because few of us get away with this unscathed, but you can reach an acceptable New Normal. For some this can take only months, for others it is many years.

Hi Mark,
Welcome to the group. I'm glad in your internet searching that you found us! I'm sure you don't feel very lucky right now but boy, did you get diagnosed fast from the onset of your symptoms. That's very unusual with Wegs.

I have to get a bunch of things done right now and I know others will weigh in on many of your questions. I do want to advise you to get a Wegs specialist involved asap. Your local guy with 5-6 cases is no way able to manage Wegs. Basically he's getting his treatment info from the internet, textbooks and research papers-- NOT from direct experience. Since you're in Wisconsin, Mayo Rochester (Minn) is the closest major center to you.

It's best if you can go yourself and receive direct care from a Wegs specialist. They will do a thorough assessment and generate a treatment plan for your local guy to carry through. You'd have direct contact with the Mayo doc, which is the best case scenario.

Second best is get your local doc to consult with a Wegs doc through the VF. You wouldn't have direct contact with the Wegs doc. This is much better than nothing, but I cannot emphasize enough how important it is to have the Wegs doc treating and contacting you directly.

Here's the contact info for the VF, where you can also find the number for Mayo.
Contact | Vasculitis Foundation

If it were me, I'd be on the phone with Mayo today.

Quack or not, your local guy is way out of his league with Wegs. He may not even know it. I really don't like that he was rude to your wife. Dealing with a serious illness like Wegs takes a village. She's your village and he was out of line. That may be an indicator of how he'll be with you in the future, as well. My original rheumy was the same way.

hi mark
you wont go far wrong if you listen to advice from jack sangye elephant and plenty more that follow they have helped me on many occasion confusing of what ? i sometimes only make it through the first few hours of day before i wiped out
take each day as it comes now
hoping tomorrows better and some days it is im working towards new normal and these guys have helped me to believe it is possible they have been through so much
keep your chin up DEE x

Does anyone else have soft tissue pain? I have joint pain (hips, ankles, knees, and sometimes shoulders, wrists and elbows) but i am also having muscle and soft tissue pain. Calves, thighs, ect... Does this happen to any of you, and how do you deal with it?

I've also had soft tissue pain, but not that much. Did you have it before you started the meds?

Hi, I so wish somebody could give me a name of a doc in Vancouver,Canada, area, that at least has heard the name Wegener. I am too dumb to find one!

I have a lot of soft tissue pain. I used to take ibuprofen, but discontinued that a year ago for fear of ruining my kidneys. I don't take anything during the day, and have learned to stuff the pain somewhere in my subconscious. I take arthritis strength tylenol (2) at night in order to sleep with it. It comes and goes and does not really seem to follow the pattern of my flares, at least I think so.

I had terrible pain in my left thigh, knee and calf for years, but it seems to have moved on these days.
I'm sorry for your pain, Mark. It can be a terrible blow when it descends upon you so quickly - like having a bad case of the flu.

Hang in there, and know that narcotic pain medication is most likely not the answer. It may take awhile for the gabapentin to kick in if it's going to help you.

Thanks everyone for the advise and well wishes. I hope all of you stay well also. I will be here often and keep you all in the loop. Glad to have all these new friends. Thank you all :)

Welcome, Mark -- Sorry you had to find us but glad you're here. What the others say is right -- get yourself to a specialist that can work out a treatment plan. I was only diagnosed in January, but have already been on one medication (mtx -- poorly tolerated by my liver) and have had surgery to correct a subglottic stenosis (narrowed windpipe). In my case no biopsy was done before diagnosis but I have two very clear markers of the disease -- the bridge of my nose has collasped (saddle nose deformity) and the aforementiond SS. I feel pretty good most days although I have a lot of ankle pain in one ankle that makes walking difficult and joint pain. I feel older and more out of sorts than I should at 44, but compared to many, I am doing all right.

These are the kindest, most knowledgeable Weggies that you can find on the Internet (and it's highly unlikely that you'll meet any in real life). Settle in and enjoy the company -- that's what I did.

I guess i didn't pay that close of attention prior to the meds, as i hurt all over then. When i bring it up to the Doc, he says not joint pain and moves on. I am asking for a referal tomorrow at my appointment. We did call Mayo and were told they are not accepting any new patients in the Rhuemy field at this time. The owner of my company is trying to change that, he has some pull i guess. Just have to wait and see. I just wish i could have 2-3 days in a row of feeling 75% (lowering my standards no, used wish for 2-3 at 80%). Instead i get 75-50-60-60-70-50-50-60-70-60, kinda reminds me of high school tests all over again. Since i started on the meds i might have had 1 or 2, 80% mornings followed by 60% afternoons, and 50% evenings. Just gets madening. Sorry, just needed to vent a little.

Did you call general rheum or the Wegs docs listed on the VF site from Mayo? I've never heard of any vasculitis center refusing patients but general docs at the big hospitals often refuse new patients.

Itdracing you are more than welcome to vent...we all do at some point .....I am so glad you are calling someone...If Mayo doesn't work out... you will like the Cleveland Clinic. Sangye is right I have never heard of the Vasculitis center refusing patients.....keep plugging along....glad your here! :)

Hi itdracing:

I was diagnosed in 2003 - fairly fast onset and almost died.

I have had lots of joint pain over the years with WG but mostly during flares. Sinus involvement ( more mucus, crusting, and bleeding and post nasal ) and joint pain and fatigue and the main first symptoms when I am having a flare. I don't know what to suggest for the joint pain but I feel that the Azathioprine is not strong enough for you and that Cyclophosphamide is in order.

There is another guy on here by the name of Jeff whose Son has WG and lives close to Green Bay. They go the Mayo Clinic in Rochester and see Ulrich Specks. He is one of the best WG experts in the world!!! I highly reccommend that you try and get to see someone like that.

If you want to call me my numbers are 306-971-7086 and my cell is 306-774-5801. I have a long distance bundle with each pnone so I can call you as well if you give me your numbers.

I am 33 and love bowling as well.

God Bless,
Phil Berggren

I say the same, itdracing. I have an ENT who is on the VF site and when I called his office in the afternoon I was seen for the first time the very next morning. I have never had to wait (he is now my surgeon) and if anything these docs are anxious to see vasculitis patients because there are so few of us and we add to their body of knowledge as well. My ENT is always working on papers --- in fact he and an anesthesologist on his team are submitting a major study of the very surgery I had.

Mark- I concur with the need for a biopsy to verify the original diagnosis of WG. (A sinus biopsy in your case, or wherever there is organ involvement.)

I concur that you need to find that WG specialist at Rochester to help you work through this disease the most efficaciously.

I concur that your wife must be in on this WG team working to bring you back to your new normal. Any doctor who treated my wife like a talking lump probably would have had a "discussion", initiated by me as the patient, about the critical nature of family support when a patient has a life-threatening disease. You, as the patient, however, are dealing with the fatigue, the decreasing energy level during the day. Shame on your doctor! New doctor. Just do it. Or settle for a promise he will treat your wife as a partner in your treatment, that she will be treated with respect when she asks questions. Oh yes, and he will give her professional answers. No, just get that second opinion and try to find a more engaged docotr because you will be involved with him or her for years.

I just feel uncomfortable with a doctor who fails on social graces. As a patient, a husband, you have too much, TOO much on your plate right now to train a doctor to show appropriate respect for your wife, the one person most likely to feel personal impact from your disease. Dump him, please. If you feel it is the decent thing to do to let him know why you've moved on, do it.

Each weggie heals at his or her own pace. Your early diagnosis is a good sign for a relatively early return to some level of normal fairly close to what you used to call normal: early diagnosis means you haven't had as much tissue damage as some of us have had. That's my guess. When that day comes, the day you feel healed, regardless of what the tests say, it is a day you might just have an hour cry with your wife once again- only a cry of joy! Believe me, the moment is overwhelming.

Sorry for my usual rant, folks! (Dump the doctor. My final advice.)

Hi Itdracing
I take Osteo Panadol 665MG, it really helps with the pain in the joints, I take intially 2 every 8 hours which leaves me a bit tired then I reduce to 1 every 4 hours if Im going okay. Sometimes on bad days I just keep taking 2 every 8 hours. Hope this helps.
cheers Col 23

Hi Mark
Im also new to WGs and totally confused. However Im still grappling with my Rheumy as she is also quite abrupt and Im thinking of changing. Trouble is im still researching where to go and who to see. Im going to have a chat with my doc about options in a few weeks. The blogs on here have been helpful in making this decision. Sometimes we dont always write down whats on our mind but the info and experience I read really helps to clarify alot. Best of luck with everything.
cheers Col 23

Quote:

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Originally Posted by Col 23

Sometimes we dont always write down whats on our mind

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The great thing about this site is that you can do exactly that and people will not jump in to judge. I don't think I've ever read an unkind word. :)

We are not a judgemental group, were all in this together and Hey we have it tough and we don't need any more grief! I love helping people and also I am learning from everyone on this forum. Today I am not 100 % because I am still recovering from my surgery, so I still enjoy just reading every one's comments. :)

I love that about our group. You can bring anything to the table and it's always met with kindness and understanding. :)

Quote:

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Originally Posted by elephant

We are not a judgemental group, were all in this together and Hey we have it tough and we don't need any more grief! I love helping people and also I am learning from everyone on this forum. Today I am not 100 % because I am still recovering from my surgery, so I still enjoy just reading every one's comments. :)

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2 days gone, elephant. For once it may be right to look back and be grateful those 2 days are over LOL

Thanks Moyan...hope to come back full speed so I can be up to speed here on this forum.

That's right-- we don't want you to lose your nagging muscles, after all. We're only looking out for you. :D

thats right sangye if you and elephant stop nagging us about things were would be
your ADVICE has on some given me the kick up the........side some days to stop feeling sorry for myself and get things sorted so please dont either of you stop NAGGING
DEE x :)

Quote:

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Originally Posted by Sangye

I love that about our group. You can bring anything to the table and it's always met with kindness and understanding. :)

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Wegener's teaches us that there are more important things in life than bickering and passing judgment on others. Most of the trivia in life is not that important anyway and certainly not worth getting worked up about.

Ain't that the truth.

Sure, it's not worth getting worked up about NOW, after WG! ;-).

There is a Wegener's support group in Vancouver with a number of members. I am not sure which doctor's they are seeing, but they should be able to help you. If you can't find that group, let me know and I will forward the right email addresses to you.

Quote:

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Originally Posted by itdracing

Does anyone else have soft tissue pain? I have joint pain (hips, ankles, knees, and sometimes shoulders, wrists and elbows) but i am also having muscle and soft tissue pain. Calves, thighs, ect... Does this happen to any of you, and how do you deal with it?

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I get pain in various of those areas. I find regular walking as far as comfortable and some physiotherapy has helped a lot. I also took Sangye's advice about being sure to get enough rest to do the recovery. So far so good.

That could be prednisone or Wegeners flaring. I know that some Wegeners patients had symptoms of soft tissue pain, I am one of them. I use to get the sides of my arms would really hurt! It was like having the flu. The joint pain is really Wegener's flare/active. That is great that you are walking.

Wonderful!! Thank you so much. And..since I am a puteridiot, took me 2 years to find this group by chance, I would really appreciate th e-mailaddress. Have as good a day as I will now. :)

Elephant- what did you find worked for the soft tissue/muscle/joint pain? I can't take any NSAIDs because the doc wants to make sure that wasn't causing the liver enzyme spike with the mtx on board, and tylenol takes the edge off, but nothing removes the pain completely. It's worst in the morning, better through the midpart of the day and then bad again at night. Right now I would say this is definitely the only symptom that my WG is active.

I suffer from lots of pain mainly in my feet, ankles and lower leg. In my case, after extensive investigation by various specialists it would seem to be caused by long term steroid use. I also have severe muscle wasting and osteoporosis which don't help. :(

I usually take a couple of Paracetamol to help me get going in the mornings when I can hardly walk.

Actually most of my muscle pain and all my joint pain is gone right now. The prednisone, cyclosporine ( WG med), cellcept and bactrim helped. Jan like you stated before you know that your WG is active so I have a feeling that is why. Once you get the therapeutic dose for the WG it should go away. Many times it is trial and error..

Mine never went away until I was back on pred. Not sure if it's just masking it, though. It's further proof to me that I was not in remission at all. The joint pain was exactly like it was pre-diagnosis, just not as widespread on a given day. It kept me from doing anything.

The pain I now experience is totally different to the joint pain I experienced with Wegener's. That was the classical rheumatic pain that is hard to escape from. This is more general and hurts most when I walk about.

Upon further discussion with my husband, I think this is really more muscle pain rather than joint. Nothing in knees, hips -- if there's any boney pain at all it's mostly in my foot and ankle that is affected. What I have is pain in lats and pecs, like you would get from a hard work out with weights. I can also experience pain in my shoulder and neck muscles. None of this is daily or constant -- it comes and goes and isn't completely relieved by ultracet or tylenol arthitis (can't take NSAIDs because of mtx). Hard to know how much of this is from walking for months with a pretty serious limp due to the ankle, and how much is due to the WG. ENT says most of my nasal symptoms are gone, and I don't even have the crusting anymore -- it will be interesting to see how quickly the SS starts giving me trouble again, although that doesn't track virulent disease either.

Jan, do you have a chiropractor?

I have an accupunturist that I was seeing for my feet (haven't been for about a month though, post-surgery), but no chiropractor. The ones around here I've always heard are rather agressive about 'chiro cures everything' and selling holistic products, so I will admit I have been biased against it. It's something I would be open to trying if I could find a good one -- and if that person just focused on my frame and not any other medical conditions.

Some chiropractors go over the top with their claims and some are also ruthlessly into sales. However, a chiropractor who only focuses on your frame is not practicing chiropractic.

When I was having back problems in my 20s, I went to a chiro. Starting going once a week and pretty soon he had me up to 4 or 5 times (it was pretty cheap and not covered by insurance -- so maybe $25 or so, I could afford it). Then he wanted to get me into a gym that he was part owner in, then he wanted to sell me supplements, then he wanted to fix my sinus headaches. I eventually stopped going to him (I think my back was pretty well fixed by that point). What I like about my acupuncturist (and I know sometimes they get th same 'over the top' rap as some chiros) is that he doesn't try to sell me the herbals, and never tells me that for certain x or y is going to work. He also doesn't suggest any of his practice as a substitute for western medicine. I would be interesting in knowing from you what you think a chiro could do for me based on what I've said about my achiness.

Since your gait has been altered by your limping, it can create misalignments in any joint (and most likely in numerous joints). Each of those misalignments interfere with the flow of nerve signals to and from the brain, which results in deepening levels of interference. So a limp turns into a shoulder misalignment that turns into a muscle imbalance that turns into organ dysfunction, etc....

Each muscle is associated with a particular organ. The pectoralis muscles are associated with liver, Lats with pancreas. Muscle dysfunction can either cause or reflect organ dysfunction. It's important to undo the interference that started the chain, or it creates widespread and deeper imbalances.

Chiropractic is definitely not a substitute for medical treatment for Wegs. It is, however, a great substitute for many other conditions. Chiropractors are considered primary care/ gatekeeper physicians in most states.

How would you suggest one go about finding a 'legitimate' chiropractor? For instance, my acupuncturist is also a medical doctor...I'm assuming that wouldn't be the case with most chiros, and might not even be a good bar to set. I found a lot of the internet suggesting that doctors that were trained in Eastern and Western medicine where the way to go for acupuncture, but will also confess that I haven't researched chiro in the same way because I really haven't thought about getting any. For whatever reason, my docs past and present seemed to have a much more positive view of acupuncture vs. chiro.

Jan, it's good that you're happy with your acupuncturist, but training in Western medicine is the last thing I would look for in one. What I look for is excellent training in their specialty-- Eastern medicine. The best acupuncturists are Doctors of Oriental Medicine (DOM). It's a difficult degree to obtain and most have trained with Chinese and/or Tibetan masters.

Chiropractors undergo schooling that is as demanding as MDs. Same anatomy, diagnostic procedures, radiology, etc.... Chiropractors have to pass National Board exams and state licensing exams. A "legitimate" chiropractor is one who's licensed, no different than an MD. You can google Chiropractic education v Medical education to see comparison tables of hours spent in training. MDs spend way more time than chiros in subjects like OB/GYN but it might surprise you to see that chiros take about 3 times more Neurology.

If you want to learn about the reason for the medical profession's slow acceptance of chiropractic, read about the anti-trust lawsuit filed against the AMA in 1976-- Chester Wilkes, DC et.al vs AMA. The AMA spent decades with the stated goal of trying to destroy the chiropractic profession because it was (and still is) the leading competition to medical doctors. It indoctrinated not only its own members, but nurses and the public. Americans don't realize to what extent they are still being affected by the decades of deliberate misinformation. Many doctors and nurses who were not even in practice (or born!) have inherited the attitudes of those before them, without ever stopping to question it. I can barely bring myself to read the memos the AMA wrote about chiropractic for decades. Horrible stuff.

Perhaps I should rephrase that 'legitimate' to good...what should one look for in a good chiro?

I have read that also about DOM degrees. My guy happens to be Taiwanese and went to med school where they teach them side my side. He was a hemotologist, but hasn't practiced Western medicine in 20 years.

Re chiropractors Thank you Sangye, another myth gone to sleep

Moyan-- you're welcome.

Jan-- thank you. It was hard to contain my shock at seeing that word used. It's said that to be a chiropractor you have to have the hide of a rhinoceros. I've definitely found that to be the case!

There are many ways of practicing chiropractic and many techniques. Ultimately the best chiropractor for you is someone you enjoy seeing, who explains everything, who respects your wishes, whose uses treatments you're comfortable with, and is someone you trust.

Sometimes it takes a few tries to find the right one. I went to two in Maryland before finding a great one in Virginia. In Arizona I used to drive 3 hours (one way) to my chiro in Scottsdale, once a month. It entailed closing my office and losing a day's income, but he was worth it. That was the price for taking care of myself.

Sangye - Sorry my words offended. When I said 'legitimate' I didn't mean to imply that some of them weren't licensed or quacks or anything -- more like I don't think a rheumy who has seen as few WG cases can call themselves a "WG specialist" although it appears that some of them do to some of the people I have seen on this board and others. In the same way, my former chiro was completely disdainful of conventional medicine, was always trying to get me to spend more with him, etc....I don't consider him "legitimate" although obviously he was licensed and a trained chiro. I would expect the legitimate guy to treat the things he can treat (like any other specialist--although I get that chiros are generalists).

I'll have to think more about this -- I'm already committed to seeing so many docs, I'm not sure I'm up to giving a whole history to another! I have quite a different worldview on holistic medicine than you do, and I'm just not sure that I'm ready to add someone else to my treatment plan.

No worries-- it was just a suggestion.

In 1995 I was 30 days from a big sailing trip and found myself in the shower unable to lift my leg 1 inch to step over the sill when I was finished. Back spasms! Somehow, I got dressed and over the course of a couple of hours got into the car for an emergency chiropractor appt. - my first ever - (being an indoctrinated RN)

I struggled like an upright crab - kind of sideways - into the office and fell into a chair leaning on one hip.

He worked on me very gently after X-Rays and a written plan. He gave me home exercises. I walked out of there just like I'd seen a television healer! 30 days later I was strong and able-bodied.

I need that again. How will prednisone affect treatments?

The only risks with pred are that it makes your ligaments more stretchy than normal and that it causes osteoporosis if you've been on it awhile. Your chiropractor will know this and know how to adjust you safely.

I posted info about how holistic docs can safely work with Weggies and the limits imposed on us by the drugs, disease, etc... It was a thread called Natural Health or something like that. I'll try searching for it.

This is Mark's wife. I just wanted to let you know that he passed away on May 31st. We are not sure if it had to do with the Wegs disease or not. He died of heart complications. Yet never had heart problems. They did an autopsy and found that his heart was like Jelly and his Spleen was red and inflamed. We are waiting for the results from the toxicology report. We are hoping that it will give us some answers.

Oh my gosh... I'm so sorry! Thank you for letting us know-- my heart is with you as you grieve Mark's loss.

Im so sad to hear of Mark passing and your loss. My thoughts are with you.
Col 23

my thoughts are with you in your loss DEE

Dear Mark's wife, I am so sorry for your loss. It is a great shock, I thought he was getting better. This shows how silent this disease is and the damage it causes . Thank you for letting us know. Please keep us posted on the findings. My heart goes out to you and your family.

So sorry to hear about Mark. I remember answering his first post and thinking that he was going to get through Ok, his story sounded so much like my own, but he seemed to have been caught earlier. Hope you manage to eventually come to terms with his loss.

I am so sorry for your loss. Thanks for letting us know. I remember him posting and thought too he was on his way to recovery.

I am sorry for your loss, God Bless you at this time & my wife & i will pray for you.

I'm very sorry for your loss.

I talked with Mark on the phone a few times. He is very nice to talk to.

My husband was at the Doctors tuesday[ our PC]. He is working very closely with the Rummie. They cut his pred back to 10 mg. they have been cutting it back for the past month. He is now complaining about sever knee pain.His kidneys are at about 30% so everything has to be kidney friendly. He gave him Tramadol HCL 50 mg. He has only taken two. One yesterday and one this evening. He said they are really helping. It hasn't taken the pain totaly away but it gets it to where it is bearable. He could take it every six hours as needed but he doesn't want to take that much. He tried tylenol but that is not kidney friendly. So speak up to the Doctors and if they don't hear you the first time tell them again.

WHat a terrible loss! I am so very sorry for you and your family, and for Mark, as well. We're very grateful that you let us know. It's in the back of all our minds, but still so shocking.

I'm so very sorry.