Sick & Tired

[Alysia]

Hi.

For many months now that I have constant crazy wattery diarrhea. I can hardly eat anything. I lost weight.

Colonscopy showed "non specific colitis". The biopsies were sent for another check, no news yet.

Many tests for certain germs came back negative. But the stool culture showed an infection, either auto immune or because of virus/ germ.

I see 2 gastro docs (the second for nutrition) and they both scratch their heads. No idea if its wg in the colon or something else. But what ?

I tried modulen ibd, which is a formula to treat Crohn's but after few days it also caused me even worse diarrhea.

I also tried 2 antibiotics which were another disaster.

Higher pred, like 10-20mg helps me to feel better. But I can't take so much pred all the time. Since all these started my eye vision deteriorated due to pred induced cataract.

My wg dr. thinks that I have a rare germ in the colon that unless you look for it, you cant find it. Waiting for the biopsies. Not sure I can trust the docs here to find rare things.

Yesterday I had my rtx. Usually I enjoy the 100mg IV pred and can eat some things without being worried. Not this time. Today I spend most of the day in the toilet. Feeling very sick. Also aching all over. Coughing.

It makes me think that it is indeed germ and that the 100mg pred makes him stronger. Does it make sense ?

All those months I also have lots of coughing (dry) and joints pains. But not sure if its wg. I dont have enough vitamin C due to poor nutrition and this can also cause joints pains.

The coughing today was harder. Maybe it is related to the mysterious germ ?

I am going to see an infectious disease dr. on Monday. How I wish that my sweet dr. Phil was around with his wisdom....

Any thoughts and ideas are more then welcome. I am just exhausted.

Thank you for being here. I love you. God bless you all.

[Arleta]

I have no answers, but wish you peace as you continue to search for health.

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[Bing505z]

Hi.

For many months now that I have constant crazy wattery diarrhea. I can hardly eat anything. I lost weight.

Colonscopy showed "non specific colitis". The biopsies were sent for another check, no news yet.

Many tests for certain germs came back negative. But the stool culture showed an infection, either auto immune or because of virus/ germ.

I see 2 gastro docs (the second for nutrition) and they both scratch their heads. No idea if its wg in the colon or something else. But what ?

I tried modulen ibd, which is a formula to treat Crohn's but after few days it also caused me even worse diarrhea.

I also tried 2 antibiotics which were another disaster.

Higher pred, like 10-20mg helps me to feel better. But I can't take so much pred all the time. Since all these started my eye vision deteriorated due to pred induced cataract.

My wg dr. thinks that I have a rare germ in the colon that unless you look for it, you cant find it. Waiting for the biopsies. Not sure I can trust the docs here to find rare things.

Yesterday I had my rtx. Usually I enjoy the 100mg IV pred and can eat some things without being worried. Not this time. Today I spend most of the day in the toilet. Feeling very sick. Also aching all over. Coughing.

It makes me think that it is indeed germ and that the 100mg pred makes him stronger. Does it make sense ?

All those months I also have lots of coughing (dry) and joints pains. But not sure if its wg. I dont have enough vitamin C due to poor nutrition and this can also cause joints pains.

The coughing today was harder. Maybe it is related to the mysterious germ ?

I am going to see an infectious disease dr. on Monday. How I wish that my sweet dr. Phil was around with his wisdom....

Any thoughts and ideas are more then welcome. I am just exhausted.

Thank you for being here. I love you. God bless you all.

I hope you are able to get rest and start feeling better. It has only been 3 years for me with GPA, but I do feel I have success because I stopped taking prednisone.


"The use of corticosteroids, including prednisone, are almost universally prescribed by medical physicians of every variety…general practitioners, family practitioners, internists, dermatologists, rheumatologists, gastroenterologists, urologists, etc. Corticosteroids are prescribed for numerous conditions that involve inflammation and/or allergic reactions including asthma, eczema, dermatitis, ulcerative colitis, crohns disease, sinusitis, iriditis, ear inflammation, bronchitis, nephritis, arthritis, bursitis, neuritis, carditis, thyroiditis and virtually every other medical condition including some cancers. It is the go to drug for medical physicians, along with antibiotics, as it will suppress virtually any type of symptom…but at what cost? The body protects itself against infection, toxicity, injury and other insults through inflammation. Despite what many in standard and alternative medicine would have us believe, inflammation is neither the enemy nor the problem. Inflammation is a constructive action purposely created by the body. It serves as a marshaling of the body’s resources and a key component in allowing us to recover from a wide variety of injuries and insults. To believe otherwise is to imagine that one of the most basic defense mechanisms of the body is a “mistake”… that the body is hapless in its actions and that we somehow know better. Such belief has allowed for the massive employment of not only steroids but also a plethora of other anti-inflammatory drugs obtained both over the counter and via prescription on a daily basis.Inflammation is a manifestation of the body attempting to normalize function, to repel invading organisms, to eliminate toxicity and to gather the body’s reparative forces to the site of injury. It is the result of adverse circumstances, not the cause of them. Whatever might be causing inflammation needs to be addressed and eliminated. When this is successfully accomplished the inflammation will go away as its services will no longer be needed. Put simply…address and remove the causes of the inflammation and the body no longer has the need to produce it.Our patients know that we are interested in renewing their health and vitality…not the mere suppression of symptoms that leads to further disease complications. The risks and complications of employing steroids are numerous and serious in nature and have adverse effects that can lead to a downward spiral in a person’s health and seriously lessen their opportunity for recovery. We continue to see numerous patients who have gotten on the corticosteroid train, often taking multiple steroid drugs from different physicians. A dependency on them is created that makes health restoration challenging.Steroid usage makes it difficult to determine what is occurring with a patient physiologically as steroids deviously mask underlying conditions. They make it more difficult to make an accurate determination of the causes of a patient’s problems both in terms of performing an accurate physical examination and in conducting laboratory testing. Steroids mask underlying causes while undermining a person’s normal physiological state."




Hormonal- By increasing the production of glucose from amino-acid breakdown and opposing the action of insulin, corticosteroids can cause hyperglycemia, insulin resistance and diabetes mellitus. We have seen patients who have developed diabetes in as little as a few weeks due to a course of prednisone administration.
Gastro-intestinal: The use of prednisone and other corticosteroids has led to the formation of gastric ulcers. When there are infections present in the GI tract steroids will exacerbate them. Steroids also lead to thinning of the gut lining which ironically can make the individual more susceptible to the very allergic reactions that they were given steroids for.
Metabolic: Corticosteroids cause a loss of muscle tissue and increase body fat in the face, resulting in "moon face," where the face becomes enlarged often making the patient resemble a chipmunk. Steroids also may lead to the development of tissue on the back referred to as a "buffalo hump". The body loses muscle tissue due to the diversion of amino acids to glucose. Steroids are catabolic in nature.
Lowered Resistance to Infection: The use of steroids leads to lowered body resistance to infections of all kinds including bacterial, fungal and yeast infections.
Skeletal Issues: Osteoporosis is a common side effect of long-term corticosteroid use. Use of inhaled corticosteroids among children with asthma may result in decreased height. We have seen numerous patients over the years whose long-term use of steroids has resulted in vertebral body collapse. One 55-year-old woman who came to our clinic, who had been on steroids for arthritis for over fifteen years had experienced vertebral compression fractures to five dorsal and three lumbar vertebrae leading to a height loss of six inches.
Neuropsychiatric: A wide variety of psychological/emotional aberrations have been related to steroid usage including steroid psychosis, anxiety and depression. Conversely steroid usage may cause a feeling of artificial well being referred to as "steroid euphoria.".
Eyes: Chronic use predisposes to cataracts and r (http://en.wikipedia.org/wiki/Retinopathy)etinopathy.
Dependency: Extended use of steroids leads to increasing dependency upon them. The longer steroids are used and the higher the amounts employed, the weaker and more atrophied the adrenal glands become due to the degenerating effects of steroid replacement. We have repeatedly seen patients with autoimmune diseases e.g. ulcerative colitis, crohn's disease, and rheumatoid disorders who’ve become dependent on steroids leading to an ongoing downward spiral in their health status."

Link: http://www.goldbergclinic.com/blog/2015/4/18/problems-with-prednisone


I know we are unable to eliminate GPA, or what causes it, yet we also may have other issues where our bodies use inflammation as it should, and prednisone may interfere.

[Pete]

Alysia, do you have a fever along with your newer symptoms? It almost sounds like influenza.

[Bing505z]

Alysia, do you have a fever along with your newer symptoms? It almost sounds like influenza.

Prednisone can mask a fever...

[Alysia]

Alysia, do you have a fever along with your newer symptoms? It almost sounds like influenza.

Well, I didnt think that I have but after reading your post I checked and I do have, low fever.
No idea whats going on. All those months and today...
Thanks for your caring Pete, Arleta & Bing. You are very kind. God bless you.

[pfries]

:hug2:Thoughts and prayers for you Alysia.:smile1:

[Rose]

Sorry to hear that you are still battling with the bowel problems. Praying that you get some answers and relief soon.

Rose

[Debbie C]

Bing that was a good article about pred, I wish I could get off it.

Alysia,be careful taking to many antibiotics..that also takes away the good bacteria in your gut. It seems like you have been having stomach issues all the time. I wish you were able to come to the states or even somewhere else where there are better drs. I know my mother had crohns and they had to take about 20 ft. of her intestines but that was due to a blockage so with your issues I don't think you have that.You have been under a lot of stress and heartache since Phil passed on. Do you think that may have a little to do with it ??? I aslo have to go see the gastro dr.on Wed. I think my stress has caused an ulcer. I wish I had an answer for you but I will pray that your drs. can figure it out . Could it maybe be tape worm ???? I am just guessing.Let us know what they say and good luck.

[mishb]

Hon, this is not good to hear :crying:

We just had a new member, in an Aussie group, that has been diagnosed with vasculitis of the bowel.
I thought of you instantly and how your case (and a few others) have probably made it easier for people to actually be diagnosed now, instead of specialists saying that it isn't possible to have colon/bowel involvement.

I know, personally, how hard it is for you to get the right balance of foods, to get enough vitamins, and unfortunately I have no answers :crying:

I did read somewhere, that too much RTX can cause issues. I certainly hope this isn't the case for you.

I hope the cough is better today, and that you get some help from your appointment on Monday.

Know that we are all here for you :hug1::hug1:

[Alysia]

Thank you, from the bottom of my heart, Michelle, Debbi, Rose, pfries and the all the others. I couldnt have make it without your support and kindness and wisdom. I love you.

Day 3 after rtx I still had low fever in the morning with some red rash, body aching all over, nose & ears aching, less coughing, stomach less crazy although not calm. Tired like hell but better then yesterday. Yesterday I also had that feeling of heart beating with force in the chest, a feeling that my cardio dr. said that can be an indication for an infection going on somewhere in the body.
No idea how much of all those are because of a virus, germ, some infection, reaction to rtx, wg smoldering (or flaring ??) others, or all of the above....

Debbi, the only months that my wg was not active were when I was with my beautiful Phil. God allowed me to be healthy enough in order to be able to take care of my sweetie. The night that he stopped breathing, my stomach became crazy again and when I was back to Israel the diarrhea didnt stop for some time.

I will ask the dr about the tape worm. Never heard of it. Thanks for being so thoughtful. Good luck at your gastro dr. on Wednesday. Please update us.

Michelle, is there a way to connect me with the aussie with the vasculitis in the bowel ? On the messenger or facebook or email ? If he will be willing to share info with me.

I know for years that I have colon involvement. It just became too bad, so not sure if its a new issue or a flare which refuses to calm down.

The infectious diseases dr. that I am going to see tomorrow was one of those who scratched their heads when my wg started... will be nice to meet him again. He was one of the good ones.

[Jules]

Hope you get some answers soon Alysia - hang in there, you're stronger than you think! :hug2:

[Debbie C]

Good luck tomorrow,let us know :hug2:

[annekat]

Alysia, I don't have any insight into your problems, I wish I did, but just know that I am thinking of you and praying that you are given some answers and something that will help. It's hard to think of you living with that every day. Is there a kind of doctor you could see that you haven't yet, maybe a gastroenterologist? Of course he would have to know something about Wegs. Could you have Crohn's? I'm not sure what the differences are between that and Wegs in the bowel. I just hope the best for you. 💞💞💞

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[annekat]

Oops, just saw above that you ARE seeing 2 gastro docs..
Well, I sure wish I could be of some help... Love you💗

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[Geoff]

Hi Alysia,

So sorry to read of your current situation but I think Debs may have touched upon something with regards to the "Stress" factor; I am pretty sure stress was one of the "ingredients" with my onslaught of WG and we all know how much you have endured the recent years.

I do hope you get some answers soon as we all know the relief that comes with that. Wishing you better days ahead.

[Jaha]

Alysia,
I am so sorry you have to go through the awful stomach pain and problems. I do think that you are under a lot of stress,but there should be something that can help you ease your stomach issues. I know that you are having a rough time with the aftermath of RTX and maybe that is making things worse. I just want to tell you that my doctor and I have decided to cut my dose in half, because of me getting to many infections afterwards and not being able to recoup from them. I will now only do 500mg every 6mos, followed by 3 months of antibiotics. I really hope you find an answer soon. Please take care of yourself.

[Alysia]

Thank you SO much, Jules & Anne & Debbi & Jana & Geoff and all the others. I love you.

I had fever in the middle of the night, and in the morning again damn crazy diarrhea.

I saw the Infectious Diseases' dr. He said that it can be a virus: CMV colitis. He checked in my blood tests and untill 2012 I was negative for cmv. So maybe that's it. Will do blood tests and also ask the gastro dr. to see if its possible to check the biopsies. He explained that it needs to be checked in a molecular level of searching for the DNA of the virus. (If I understood him correctly).

Anne, the gastro dr. ruled out Crohn's.

Jana, are you on any other med in addition to rtx ? For me its only pred and rtx. I need to get the second round next week. The infectious diseases' dr. said that the colitis might be wg and not something else. So I dont think I will give up on another 1000mg because it might be a flare also. On the other hand, if its a virus then I better not... ??? No dr. can tell anything for sure...

Thank you all for being here. God bless you.

[Debbie C]

I know most everyone seems to get rtx on a regular basis. I have only had 1 infusion. But maybe its just me , but my gosh , that stuff comes with SO many dangerous side effects and its takes awhile to actually work. Do you think maybe its too much.
I'm sorry you didn't get any answers today that you needed. MAYBE it is a little bit of the flu right now ...with the fever and other issues. I hope Michelle's friend can maybe help that has the wg in the colon. Keeping you in my prayers. Have some chicken soup and go to bed !

[Alysia]

I just chatted with the aussie weggie with bowel involvement that Michelle connected me with. Thanks again Michelle. You are so kind and I love you.

The lady said some important things so I write it here, maybe it can help others. It sure helps me.

She said that vasculitis in the bowel can be detected only if they remove a section of the bowel and analyze it. She said it was not her case. Her diagnosis was clinical. She also had diarrhea and pains, was better on steroids and flaring when off them. She had high inflamation markers in her stool samples (which I also have). Her dr. rulled out Crohn's, ulcerative colitis and infections. (Which is also my case, except for the last test of cmv colitis which I am still waiting for the results).

Her info came in perfect timing, because I checked about my biopsies yesterday with the gastro dr. and it turned out that the pathologist didnt check them again yet AND that I will need to pay for that (I already paid to the gastro dr. enough money.. ). So checking the biopsies again is useless.

So far it sounds like it is wg flaring in my colon.

My best conclusion of today is that:

A fellow weggie can help you hundred times more then any dr.

Thank you all for being here.

[mishb]

I'm so glad she was able to put your mind at ease.

I like your conclusion and I totally agree........weggies rock.

So what is the answer though - do you increase your pred and stay there, or did she have some food suggestions for you?

[Rose]

Alysia, I also had high inflammation markers in my stool when I had the bowel flare ....apparently not as high as a Chrones patient or someone with ulcerative colitis but high nevertheless. As I mentioned in my post Bowel Flare it was only when I received the 500 mgs of Solumedrol for 3 consecutive days that I got relief from the diarrhea (30 plus times a day) and the relief was immediate after the first 500 mg infusion.

My Rheumatologist told me at the time that he had to hit the flare hard with the Solumedrol and that smaller dose of oral cortisone would not work.

It is over 2 years now since the Solumedrol and no more flares in my bowel. After the 3 days of the Solumedrol I immediately returned to the 2.5 mgs of prednisone that I have been taking for the previous 4 years or so and continue to do so today.

As I also mentioned in my post Bowel Flare, the IV Solumedrol suppressed my immune system and I started to get repeat attacks of Diverticulis. I had an attack of this about 3 weeks before the Solumedrol (probably caused by the constant diarrhea) and was not fully recovered when my immune system was suppressed with the Solumedrol.

Should the bowel flare happen again the Rheumatologist says he is just going to try one infusion of the 500mgs IV and see how it goes.


Rose

[gilders]

Hi Alysia, I've been away for a while and I'm disappointed to hear your bowel issues are getting worse.
We both talked about our bowels previously, as I've also had lots of problems, with no diagnosis.

Fortunately for me, after 5 years of terrible bowels mine have been a good bit better for the lat 2 months. I've finally come of pred, which may be nothing to do with it. I just hope you get some answers soon, or it miraculously improves like mine has.

I do think stress is likely to aggrevate the problem, even if it's not the sole cause.

[Alysia]

Thank you so much, Michelle, Rose and gilders for your caring and wisdom and kindness.

I think that my wg is flaring. The last few days my joints are screaming, especially in the middle of the night; Like an anatomy lesson, telling where do you have joints... also a bit of fluids in my ears, some nose productions (tiny bloody) and coughing all day long. And that damn diarrhea. I think I also had some virus few days ago, because I had fever but its gone. Thats why I hesitated if and when I should take more pred.

Question number 1: if you have a virus/ germs/ infection - then elavating the pred will make it harder to recover ?

Rose, this is what I understood from what you wrote about the coincidence of diverticulitis after high IV pred ?

If I will get an infection now, I will be in trouble because every antibiotics right now makes me diarrhea.

2 days ago I upped my pred from 5mg to 15mg. I was careful not to up it too much because of what I wrote here on question number 1. So I still have joints pains, etc. but feeling a bit better.

I thought that I had some virus right after the day I got rtx, because eventhough I got 100mg IV steroids on Thursday, I had totally crazy diarrhea and other symptoms on Friday afternoon.
But then I thought: can it be a "reaction" for "tapering" fast the steroids from 100 to 5mg? Does it make sense ?

Question number 2: Those who are getting rtx, at the day after (which means after the 100mg steroids) how much pred do you take ? Is it possible to have "reactions" which are similar to reactions that we get after a too fast taper ? (When we get our symptoms back and strong)

(I hope my question is clear enough... ?)

Gilders, maybe your bowels issues are gone because you are in remmision ?

Thank you all for being here. I love you. God bless you.

[Pete]

Regarding your question #2: My pred dosage does not change on the days during and following rtx. I generally sleep poorly the night of the infusion, but I think that's attributable to being inactive that day and still getting the steroids through my system. The day following the infusion, I'm a little tired, but it doesn't prevent me from doing anything. I'm back to normal within 24-36 hours.

[Rose]

Alysia before the repeat attacks of diverticulitis in 2015, I had been suffering from attacks for around 10 years. I had my first attack in 2005 (3 years before Wegs diagnosis) when I was 55. At first it was one attack every 2 years but increased over the years to about 2 attacks a year, Diverticular disease is not uncommon in older people.

I actually consulted with my Gastroenterologist before starting the IV Solumedrol as I was concerned because of my history and the fact that I had had a bout of diverticulitis a few weeks before. He was hesitant at first to agree to the treatment because of my recent bout as he was worried that it would return and although a Wegs flare was not diagnosed (all tests were returning normal) in the end he told me to go for it.

None of the doctors were convinced that it was a flare but they could find no other reason for the constant diarrhoea and how terribly ill I was feeling....and looking!! The doctors and I decided that it was worth a shot even although there was a possibility that it would not work and would infact give me more problems. It worked for the flare but unfortunately I did get bouts of diverticulitis following the treatment. I don't think that would have happened had I not had a history of diverticular disease and had just fought a recent bout diverticulitis.

To answer your question.......yes high dose Pred will make it harder to recover from an infection. I would also like to say at this point an elevated temperature can also be a sign of a Wegs flare. It is very difficult for the doctors at times to differentiate between a flare and an infection.

Anyway that is my story. It was definitely a Wegs flare in my case. I am a bit confiused about your case as I would have thought that 100 mgs of Pred would have helped your diarrhoea if it is a flare and not made it worse. I really do hope you find answers soon

Rose

[Alysia]

Thanks a lot for your comment, Pete and for sharing your story, Rose.

Rose, You have being through a lot... Its a tough combination of the diverticulitis and wg... are you feeling ok with your colon now ? Is your wg in remission ?

Your explanation about the pred, making it harder to recover if one has also a virus or an infection, is what I thought, and that's why I am now on 15mg pred only... not sure what's going on right now: still feeling VERY sick, my joints are killing me all night and in the morning before the pred start to work... I still have damn crazy wattery diarrhea many times early in the morning (5AM), coughing, low fever from time to time, tonight I also had night sweats.

I am not sure if its just wg flaring and the 15mg pred is not strong enough, or if I also have something else going on with the flare.

My wg dr. suggested to check whipple disease in the biopsies and I gave his letter 2 months ago to the gastro dr. who did nothing about it. I just waited and waited for his answer in vain. Now I made a negotiation with him so hopefully he will do something about it. Whipple disease has same symptoms like I have : joints pains, diarrhea, coughing, vision deteriorating. It needs antibiotics and can be fatal without treatment. I just still cant believe how the gastro dr. Let me wait in vain without checking it.

Going to second round of rtx tomorow. I dread the day after.

Really very tired.

Thank you for being here.

[Pete]

Alysia, I was wondering if you have ever used an OTC anti-diarrheal medication such as Imodium.

Hope you get some relief soon...

[mishb]

I know Andrew made a 'Like' button, but there are times like this, that I need a 'Don't Like' button.

Alysia, this is not good. But you are rare because you have WG, so why not be super rare :sad:
Surely they would have seen signs of Whipple's when you had the endoscope down.

Best of wishes and luck with the infusion and I hope it doesn't knock you around too much.

Love and big hugs, sent your way :hug2::hug1:

[Jaha]

Alysia, I am so sorry you don't have an answer for the bowel problems. I am wishing all the best with your RTX infusion. I would be very concerned about getting this infusion, before getting the doctors to confirm with you that this is not due to infection. Please asked them lots of questions and take really good care of yourself. Do you have someone to look after you? Please let us know how you are.

[annekat]

I wish I knew something helpful to say, but just know I'm thinking of you during the infusion and wishing you the best of everything. With love!!!

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[Alysia]

Thank you so much, Pete, Jana, Michelle, Anne and all the others. Your support and kindness and caring means to me more then I can ever express. I love you with all my heart.

A day after rtx and the 100mg steroids IV, the joints pains are MUCH less, BUT I had about 4 hours of damn crazy wattery diarrhea this morning and I am coughing all day long. It doesn't make sense from the WG point of view.

I sent an email to my WG Dr. He is amazing. Like Pete said, he is a keeper. He wrote to me that besides wg, he thinks that something else is going on. He doubt its a wg flare. He thinks it might be the whipple disease.
Since the damn gastro dr. didn't bother to check it in the biopsies, and we can't count on him, we will check the possibility of PCR testing. It's a testing which track the DNA of the germ. But not sure if we have it in Israel. My wg dr. Wrote that he will check about it in his hospital and I will check in the labs of my health service. He also prescribed to me doxlyn. I hope I can bear it. He also wrote not to take more then 15mg pred.

My dear pred can't even help me now. Neither my beautiful dr. Phil. I dreamt that he was sad.

Very very tired.

[Alysia]

Now I got also pneumonia.

Maybe it is wg flaring ?

Or just "regular" pneomonia because of being immune compromised ?

How can we tell ?

[Pete]

Now I got also pneumonia.

Maybe it is wg flaring ?

Or just "regular" pneomonia because of being immune compromised ?

How can we tell ?

Remember what our friend Jack said: "Just because you have wegs doesn't mean you can't have something else."

I know there's little comfort in that, but I hope you're getting treated for pneumonia, and that you recover quickly.

[annekat]

Alysia, my heart goes out to you. PLEASE recover from this pneumonia fast and stick with that "keeper" doctor to get to the bottom of what is going on with you. We all love you so much.

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[im so blessed]

I'm praying for you Alysia.I hope they are not going to keep giving you the rituxan right now, when you are so sick. Anne is right, we do love you. You're a very special part of the forum. Keep fighting!!!

[Alysia]

Thank you so much for your kind words and caring, Anne, im so blessed and Pete. I love you all and I feel honored to belong to our wg family.

Im so blessed, I finished this round of rtx. No more in the next 6 months.

My blood tests came and they look weired: wbc and crp are normal. But hemoglobin dropped dramatically to 9.7. Also some other numbers are not normal:

Rbc - 3.9
Hematocrit - 30.8
MCH - 24.9
Platelets - 570
Neutrophiles % - 86.3
Lymphocytes % - 8.5
Lymphocytes - # - 0.54
ALT - 53

Thats weired with the ALT (liver enzymes). The norm is 30. So something is wrong.
I dont understand whats going on. I sent the results of the blood tests and of the chest x-ray to my wg dr. He wrote back that there is an infectious process going on for a while now.
I still wonder if its not wg.

Any thoughts are very welcome.

[im so blessed]

I know that alot of tylenol (acetaminophin) can elevate liver enzymes. Have you been taking any over the counter stuff that has this in ?

[mishb]

Alysia, I'm still worried about you and the pneumonia.

My ALT markers are just as high as yours this month, and also ALP markers are very high.
My GP said that they aren't too high as to start bells ringing, but they are high for me, and they are high for the average.

Two things that I have been taking differently since my last blood test are
Panadol Osteo (same as Tylenol, I think) for a steroid related rotator cuff tear, and also magnesium tablets, just because I felt I needed something since I can't take multi vitamins.

I'm so blessed - my doctor said that the Panadol, will not increase my ALP liver test, but she also didn't think that the magnesium tablets would either.

Apart from the torn shoulder tendon, I feel totally fine.
Alysia - I wish you felt fine as well :crying:
When will you find out about the increased ALT?
Do your results also show ALP? I would be interested in that result

[Jaha]

Alysia,
I praying that they get you figured out soon and that the Doc takes good care of you. The infusion has prob been really harsh on you, when you had an infection to begin with. I'm having problems with an unknown infection also and I blame it on the infusions. I'm wishing you all the best for feeling better soon. Please take care of yourself. Love and hugs to you dear friend.

[Alysia]

Thank you all for being here, I love you.

Thank you for your kind words, Jana, you allways warm my heart. I am sorry that you are having an unknown infection right now. What are your symptoms ? Are you getting any treatment for it ? I think you are right that the last rtx crushed me.

I am so sorry, Michelle, for your pains from the shoulder tendon and for the elavated liver enzymes.. we need to call dr. pberggren1 to be in charge...

In my blood tests the other number for liver functions is not called ALP but AST (GOT) which is this one:

http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/8360

Our norms for it are between 10 to 31 (same for the ALT) and mine is 23 which is normal. How much is yours ?

I think that im so blessed might be right for us both. Thank you so much im so blessed. We are blessed to have you with us.
I am living daily on paracetamol in the last few weeks because of joints pains and stomach pains. Its the same as tylenol. And eventhough your dr., Michelle, said that its not connected, read this link:

http://www.mayoclinic.org/symptoms/elevated-liver-enzymes/basics/definition/sym-20050830

Also ALT can be elavated because of viruses. My family dr. Checked all the following in my blood tests (they all came negative, so its not my case, but ask to check yours):
Brucella AB
Cmv
Parvo virus

I think there are more which didnt come back yet. Ask to check all viruses related.

I need to find a new gastro dr to check more about the liver. My wg dr. didnt say something clear about it, just that I might have an infection going on for some time now in my lungs and MAYBE in the liver.

I took first pill of Levofloxacin for the pneumonia. Please pray that it will not cause more diarrhea. Just too tired from it.

I couldnt have make it without you, my wg family. Thanks and God bless you all.

[im so blessed]

I know that my sister can no longer take tylenol, as it elevated her liver enzymes and she was in the hospital with severe stomach pains from it. She had been taking the tylenol for a couple of weeks for a head cold prior to this. her numbers did come back down again. Alysia did you have this test done recently when you were not taking this medicine? I'd think if they were normal, but now elevated, it could be the medicine causing it. But i would definitly want a Dr to decide that for you! I sure hope and pray you are getting better!!!

[mishb]

I am so sorry, Michelle, for your pains from the shoulder tendon and for the elavated liver enzymes.. we need to call dr. @pberggren1 (http://www.wegeners-granulomatosis.com/forum/member.php?u=406) to be in charge...

In my blood tests the other number for liver functions is not called ALP but AST (GOT) which is this one:

AST - Clinical: Aspartate Aminotransferase (AST) (GOT), Serum (http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/8360)

Our norms for it are between 10 to 31 (same for the ALT) and mine is 23 which is normal. How much is yours ?

I think that @im so blessed (http://www.wegeners-granulomatosis.com/forum/member.php?u=8524) might be right for us both. Thank you so much im so blessed. We are blessed to have you with us.
I am living daily on paracetamol in the last few weeks because of joints pains and stomach pains. Its the same as tylenol. And eventhough your dr., Michelle, said that its not connected, read this link:

Elevated liver enzymes - Mayo Clinic (http://www.mayoclinic.org/symptoms/elevated-liver-enzymes/basics/definition/sym-20050830)


.


Thanks Alysia, yes I definitely need Dr Phil

ASP is also on my blood test, and it is just outside the normal, at 32

I think I'm so blessed may be correct, but the reason the doctor said no, is because I'm only having two tablets at lunchtime, and two at night. Two every 12 hours instead of two every six hours. I'm not sure what the alternative is at the moment, because of the shoulder, so I will keep taking them for the time being.
I'm also not sure whether to stop taking them a couple of weeks prior to my next test, or keep taking them so that the vasculitis clinic can look in to the results.

I hope the levofloxacin works and puts you on the road to recovery (without any more diarrhea)

[Jaha]

Alysia,
I figured the infusion would be very rough on you. I am praying that you get over this pneumonia and other infection quickly. I'm sure that the infections are wearing you down. Please rest and take care of yourself, we need you at full capacity, to keep us in line on here.
My infections are UTI's and I also have something going on with my stomach. I go back to CC next week to see abthe Gastroenterologist. I'm in the process of finding out what is going on. I am due for my infusion this month and am a little afraid of having it done right now.
Please keep us updated on your condition. Hugs!

[annekat]

Alysia, be careful with the levofloxacin. The brand name in the US is Levaquin. When I took it, pre-Wegs dx, I got very weak, with achy joints and twinges in my tendons and later found out that it, and others in the flouroquinalone family are known for this sort of thing. Later, I took others in the same family, such as Cipro, with no ill effects. Just be careful moving around, up and down stairs, do nothing that will risk pulling a tendon. I've heard the same thing about pred, so maybe you already do this. Not trying to alarm you, just beware and pay close attention to how it effects you. Not everyone experiences this, and it is a very effective antibiotic, the only one that worked on my big ear infection at the beginning of WG. If any problems, talk to your doc. Best of luck.

Sent from my MotoE2(4G-LTE) using Tapatalk

[Alysia]

I know that my sister can no longer take tylenol, as it elevated her liver enzymes and she was in the hospital with severe stomach pains from it. She had been taking the tylenol for a couple of weeks for a head cold prior to this. her numbers did come back down again. Alysia did you have this test done recently when you were not taking this medicine? I'd think if they were normal, but now elevated, it could be the medicine causing it. But i would definitly want a Dr to decide that for you! I sure hope and pray you are getting better!!!

Thanks a lot for the important info. The tests are from Sunday. I will wait for a while before checking again. I am glad that your sister have recovered and sorry she cant use tylenol anymore. What does she take if she need ?

[Alysia]

Thanks Alysia, yes I definitely need Dr Phil

ASP is also on my blood test, and it is just outside the normal, at 32

I think I'm so blessed may be correct, but the reason the doctor said no, is because I'm only having two tablets at lunchtime, and two at night. Two every 12 hours instead of two every six hours. I'm not sure what the alternative is at the moment, because of the shoulder, so I will keep taking them for the time being.
I'm also not sure whether to stop taking them a couple of weeks prior to my next test, or keep taking them so that the vasculitis clinic can look in to the results.

I hope the levofloxacin works and puts you on the road to recovery (without any more diarrhea)

4 pills a day are exactly what I took in the last weeks. But after reading what im so blessed wrote I tried to avoid and take less. I was able to make it with 1 pill a day. Pred helps my pains. Maybe it can help you ? Maybe you need to get some treatment for the shoulder ? I read about it in Hebrew and it was written that there might be anti inflamation meds and local steroids injections. Please take good care of yourself.

[Alysia]

Alysia,
I figured the infusion would be very rough on you. I am praying that you get over this pneumonia and other infection quickly. I'm sure that the infections are wearing you down. Please rest and take care of yourself, we need you at full capacity, to keep us in line on here.
My infections are UTI's and I also have something going on with my stomach. I go back to CC next week to see abthe Gastroenterologist. I'm in the process of finding out what is going on. I am due for my infusion this month and am a little afraid of having it done right now.
Please keep us updated on your condition. Hugs!

Thank you so much for your kind words and caring. I am sorry that you have to struggle with UTI's. Its tough. I also had them one after the other during my first year on rtx. I was also on mtx. I quit the mtx and it helped. Also, if you are off antibiotics for 10 days and give urine sample they can detect the specific germ and see to what antibiotics it reacts. I was on longer treatment and few months on lower doze of the antibiotics for maintenance. Now I only get them every couple of months and 14 days on antibiotics are enough.

[Alysia]

Alysia, be careful with the levofloxacin. The brand name in the US is Levaquin. When I took it, pre-Wegs dx, I got very weak, with achy joints and twinges in my tendons and later found out that it, and others in the flouroquinalone family are known for this sort of thing. Later, I took others in the same family, such as Cipro, with no ill effects. Just be careful moving around, up and down stairs, do nothing that will risk pulling a tendon. I've heard the same thing about pred, so maybe you already do this. Not trying to alarm you, just beware and pay close attention to how it effects you. Not everyone experiences this, and it is a very effective antibiotic, the only one that worked on my big ear infection at the beginning of WG. If any problems, talk to your doc. Best of luck.

Sent from my MotoE2(4G-LTE) using Tapatalk

Wow, thanks for the info, Anne. I didnt know all these. I couldnt move much because of fever and heavy breathing so the only risk was when I cleaned the litter boxes of my cats :)

2578

[annekat]

Well, maybe by the time you can move again, you'll know whether the drug is affecting you that way. I've read all sorts of scare stories about it on the internet, including delayed reactions and lifelong problems. But I didn't have those and wonder how much is hype and exaggeration. Best not look at those, what's done is done, and you just need to rest. I hope your kids are taking good care of you. Let them clean the cat box. The pic of the cat in the hazmat suit is funny! 🐈 Be well soon!

Sent from my MotoE2(4G-LTE) using Tapatalk

[Alysia]

An update: day 3 on the levofloxacin, so happy for no fever today, thanks be to God :) also no diarrhea. I think it helps my stomach. The only side effect for me is insomnia but I will take it as it is. Still coughing.

The results of the second check of my biopsies from the colon came back. Thanks God they rulled out the Whipple disease. It was so scary because it can affect the brain. So I am happy that I dont have it.

I have a new diagnosis of second disease: collagenous colitis. It might be caused by the immune system attacking itself. It can be treated by steroid called budesonide. Did anyone ever try it ? With or without pred ? I will have to check the combination of the 2 together. It means that all the crazy diarrhea that I am having for months now, is not WG related. So I think that those are good news after all.

Thank you all for being here. I love you and I keep you in my prayers. God bless you all.

[MikeG-2012]

Silly question, but you do not drink sugared or diet soft drinks do you?

I had constant IBS issues, and once I cut out the soft drinks, gone!

[Alysia]

Silly question, but you do not drink sugared or diet soft drinks do you?

I had constant IBS issues, and once I cut out the soft drinks, gone!

Thanks for trying. No. I dont drink any of them. Actually all I can drink is black tea, no sugar, and water. All I can eat safely is chicken, eggs, toastes, white pasta. I now try to eat apples again to gain some vitamin c. Because it came back almost zero in my blood tests.

[annekat]

Glad the levofloxacin is working out, no diarrhea, no Whipple's disease. Sorry about the strange new dx but glad it means WG is not the problem. I think Jacquie, Booknut, takes budesonide with pred, not sure, you could ask her. I have taken other steroids with pred, too, as in inhalers. I'm glad you are getting some answers and there's more hope for feeling better in the future. 😊

Sent from my MotoE2(4G-LTE) using Tapatalk

[Pete]

I took budesonide as an inhaled steroid early in my wegs journey when I was still having breathing issues. I googled it and in its oral form, it's used for Chrohn's and ulcerative colitis.

I was also on 60 mg pred while using budesonide as needed. I had no problems.

Hoping you respond well to this treatment!

[Alysia]

Thanks a lot for the info, Anne and Pete. It is calming to know that I can take both together, even up to 60mg pred.

[Alysia]

Does any one have bleedings under the nails ? It looks like I can see tiny blood vessels under the nails and it is aching.

[mishb]

Does any one have bleedings under the nails ? It looks like I can see tiny blood vessels under the nails and it is aching.

Is it a splinter hemorrhage. I have had these a few times.

Bob put a thread up about it, a few years ago

http://www.wegeners-granulomatosis.com/forum/general-wg-chat/4182-splinter-hemorrhages.html

[Alysia]

Wow. Thanks for the info Michelle. Interesting.

[marta]

Hey beautiful Alysia,

I haven't read all the replies to the end, so forgive me if I am repeating something someone else has said, but mine is so 'out there' that I doubt anyone else is as cooky as me.

Have you considered parasitic infection? I know it sounds gross, but with a depleted immune system and living in a warm environment it's a high possibility.

Last year, before my flare, there was a guy coming to our town with some pretty amazing theories, and even more amazing success. Quite a few people in my small town of 4,500 were helped by him, and the most help came to those with gastro issues. My mom being one of them, and a neighbour who was diagnosed Celiac being another. It turned out that my neighbour had an 11 foot tapeworm and once she took antiparasitics, and passed it, she is no longer Celiac. My mom had diverticular disease and couldn't eat, she was a shadow of her former self, and after treatment with him, she eats everything. It's worth a check, but some docs are not very thorough, as was the case with my neighbour, who went to to medical docs in town to confirm the diagnosis he gave her of a tapeworm, and they did the stool test and told her she has no parasites, just Celiac disease and to forget about this quack. She luckily didn't listen to them and did the three day treatment, and is now healthier than she has ever been.

Mom's diverticular issues were quite alleviated right from the get go with Beta Carotene. I think that would help you too as any gut issues tend to break up the mucous membrane in your guts, and beta carotene helps rebuild mucous membranes (hence the it's good for the eyes bit) What he told mom to do is take high doses (she was taking three in the morning and three at night) of beta carotene until you start to see your skin turn orange. When you see a change in skin colour, it is no longer acting therapeutically and your body is storing it, and then you can stop taking it. It sure helped my momma's tummy.

I'll also send you the link for Leonard's site. He overstates his ability sometime, which is how he tends to turn people off, and I've told him as much, but he has also helped a lot of people (not all, like he likes to think) but a lot. So it's worth a look if nothing else. Blog ? The Blog of Leonard Carter (http://www.muscletesting.com/blog/) (I'm linking the blog because it has some interesting topics.) Maybe you can make another trip to Canada and see Leonard and get your issues fixed up. ;)

Hope that helps.
Much love.

Marta

[BookNut]

I have been away from the forum for quite some time. My ipad is working better now so I am back. I was stuck with my phone and the website is impossible on a phone.. Can't get the hang of the app.

Anyway, I have taken budesonide. My doctor did not want me to,take the inhaled version while I was on pred. I don't remember why. It was onky my primary care at that time, and she is very cautious about meds. Later on in my journey with asthma/chronic sinusitis/bronchiectasis, I had an ENT who gave me budesonide capsules which I emptied into my sinus rinse, It seemed to help quite a bit. Very expensive though and ultimately I found that other things worked better.

I have never heard of taking it in a pill form. I am glad that it is working for you. annekat has an amazing memory. I barely remember taking it myself! Feel better soon! ❤️

[annekat]

Jacquie, I also remember that your husband, Bob, possibly took it in some form, for his issues? Yeah, my memory is weird, I remember some things but not others. It was in our email ramblings about inhalers and such. I have never taken budesonide myself.

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[BookNut]

Yes, Bob uses inhaled budesonide when his asthma is worse than usual. He doesn't like to take it because any kind of steroid can worsen or cause glaucoma, which he has.

[Alysia]

Hey beautiful Alysia,

I haven't read all the replies to the end, so forgive me if I am repeating something someone else has said, but mine is so 'out there' that I doubt anyone else is as cooky as me.

Have you considered parasitic infection? I know it sounds gross, but with a depleted immune system and living in a warm environment it's a high possibility.

Last year, before my flare, there was a guy coming to our town with some pretty amazing theories, and even more amazing success. Quite a few people in my small town of 4,500 were helped by him, and the most help came to those with gastro issues. My mom being one of them, and a neighbour who was diagnosed Celiac being another. It turned out that my neighbour had an 11 foot tapeworm and once she took antiparasitics, and passed it, she is no longer Celiac. My mom had diverticular disease and couldn't eat, she was a shadow of her former self, and after treatment with him, she eats everything. It's worth a check, but some docs are not very thorough, as was the case with my neighbour, who went to to medical docs in town to confirm the diagnosis he gave her of a tapeworm, and they did the stool test and told her she has no parasites, just Celiac disease and to forget about this quack. She luckily didn't listen to them and did the three day treatment, and is now healthier than she has ever been.

Mom's diverticular issues were quite alleviated right from the get go with Beta Carotene. I think that would help you too as any gut issues tend to break up the mucous membrane in your guts, and beta carotene helps rebuild mucous membranes (hence the it's good for the eyes bit) What he told mom to do is take high doses (she was taking three in the morning and three at night) of beta carotene until you start to see your skin turn orange. When you see a change in skin colour, it is no longer acting therapeutically and your body is storing it, and then you can stop taking it. It sure helped my momma's tummy.

I'll also send you the link for Leonard's site. He overstates his ability sometime, which is how he tends to turn people off, and I've told him as much, but he has also helped a lot of people (not all, like he likes to think) but a lot. So it's worth a look if nothing else. Blog ? The Blog of Leonard Carter (http://www.muscletesting.com/blog/) (I'm linking the blog because it has some interesting topics.) Maybe you can make another trip to Canada and see Leonard and get your issues fixed up. ;)

Hope that helps.
Much love.

Marta

Thanks for the info, the caring and the great story. Your mom sounds very brave. Not sure I have enough courage to try the beta carroten up to this point.
I do get a diagnosis last wednesday (wrote it above) of collagenous colitis. Second disease. Talking about AI diseases and finding the common thread, my new disease might be AI. It is also rare, at least in Israel, and from what I read so far, it is not clear if its AI or not. The treatment is steroids (budesonide).

[Alysia]

I have been away from the forum for quite some time. My ipad is working better now so I am back. I was stuck with my phone and the website is impossible on a phone.. Can't get the hang of the app.

Anyway, I have taken budesonide. My doctor did not want me to,take the inhaled version while I was on pred. I don't remember why. It was onky my primary care at that time, and she is very cautious about meds. Later on in my journey with asthma/chronic sinusitis/bronchiectasis, I had an ENT who gave me budesonide capsules which I emptied into my sinus rinse, It seemed to help quite a bit. Very expensive though and ultimately I found that other things worked better.

I have never heard of taking it in a pill form. I am glad that it is working for you. annekat has an amazing memory. I barely remember taking it myself! Feel better soon! ❤️

Thank you for your caring and for the info Jacquie. I am glad to know that budesonide can be used with pred.
Talking about annekat - I agree: her memory is amazing ❤ Thanks Anne.

[Alysia]

An update: still coughing like hell. Joints screaming. The bleeding under the nails is painful. Tired like hell. Tonight I had night sweats. Some nights I dont.

I saw my lungs dr. yesterday. He checked me a long hour. Spirometry test was ok. He didn't like my blood tests. He jumped from his chair when I showed him my nails. He thinks that the wg is flaring. I also think so.

But I was less stressed then him. I "saw" more weggies flaring then he did :)

He wanted me to be addmitted to the hospital. Not only because of wg flaring but because he said that there is a need to rull out a germ in the heart's valve. This one:

https://en.m.wikipedia.org/wiki/Subacute_bacterial_endocarditis



He didnt explain to me why he suspects it. Maybe he saw something in my chest x-ray ?
He just said that I need to be addmitted. That after I will finish the antibiotics, they will have to take blood cultures to check it.

I didnt go to the hospital.

Yet ?

First, only today I finished the antibiotics so I guess there should be a period of time before the blood cultures can be valid. Anyone knows how much time needed ? No use to wait for it in the hospital.

Second, considering the wg flaring, I already got my rtx. Its done. Just needs to wait for it to start working. I cant get more pred on my own before rulling out germs. I am on 10mg right now. Not enough for a flare. But more safe for germs. Also my (new dx) colitis doesnt react well to more then 10mg pred and I didnt yet start treament for it (cant do it all together).

Third, hospitals here are crowded and filthy. I dont want to catch some germs or viruses. Also I can only eat my clean specific food, I need my toilet and my bathroom. And my quiet. There is a holiday this week here and I guess no decent dr will be available in the hospital.

So this is the thinking that I made since yesterday. Any comments are very welcomed. Especially if any one knows how much I need to wait after finishing antibiotics, so that the blood cultures will be valid.

Thank you all for being here. It means so much for me. I love you. God bless.

[Arleta]

God be with you as you search for answers and solutions!

Sent from my SM-T800 using Tapatalk

[Alysia]

Thank you Arleta. You are very kind.
God be with you too ❤

[MikeG-2012]

Hang in there Alysia!!

[marta]

Wow. While I was reading the post "flare" was going through my mind. I totally see your line of thinking, and I don't know if my choices would be different based on the situation. I also like to avoid hospitals if I'm not going to get to see a doctor who I feel confident will understand what's going on, and in the process expose myself to hospital bugs that could get us worse than most patients due to our treatment. I get your logic and reasoning. I will send you all the positive energy I've got. Tricky situation with the bug the doctor found, but knowing you, you'll have this nicked in no time.

[Alysia]

My heart echo results came back today. No indication to SBE. Thanks be to God.
It did mention: "mild pulmonary hypertension".
I googled it and didnt know what it means in my case. Anyone knows ? Can it be a reaction to the wg flaring in the lungs ?
The pred is doing what it knows to do, so my joints are less sore and I cough less. Will see my dr next week..
Thank you all for being here. I love you ❤

[MikeG-2012]

The pred is doing what it knows to do, so my joints are less sore and I cough less. Will see my dr next week..


I am glad you are getting some relief Alysia!!

[BookNut]

Glad to hear you are doing better. I hope you can avoid the hospital. ❤️

[mishb]

My heart echo results came back today. No indication to SBE. Thanks be to God.
It did mention: "mild pulmonary hypertension".


How is your blood pressure, do you take anything for this? I don't think you have ever mentioned your bp before

I'm glad your joints and your cough are being relieved by our friend pred.
Hopefully the doctor will have some more answers for you next week

[Aneinu]

Wishing you all the best.

Sent from my SM-G920V using Tapatalk

[Alysia]

Thank you, Mike, Jacquie, Aneinu, Michelle and all the others. I love you ❤

An update:

a mess:

So, the lungs dr thinks its a wg flare. I also think so. But he also suspected endocarditis (infection in the heart's valve) and wanted me to go to the ER. I didn't.

I saw my wg dr. yesterday. To my great surprise he doesn't think it's a wg flare. He said that it doesn't behave like my previous flares.

Can't each flare behave different ? Since when is wg behaving ?

He thinks that it is something infectious going on: andocarditis and maybe more. Labs for Q Fever came back on the border. He also still suspect that scary whipple disease. He said that the biopsies that were checked are from the large intestine and not from the small intestine, so it can't rule it out.

He said that with all the rtx that I am getting for years now, 2000mg every 6 months, it doesn't make sense to him that my wg can flare. Really ? What are you saying wg experts ? Please tell me. I need your experience.

He told me to consult with my infectious diseases dr. So right after I went out from his office I called the infectious diseases dr. who works few streets away and he accepted me.

The infectious diseases dr. checked me and all the labs, tests, letters from docs, heart echo etc. for 50 min. Then he said: "you don't belong to me. You have nothing infectious. Don't take any antibiotics. I will meet you only on happy occasions". He still sent me to check again the Q Fever and also to do blood cultures to rule out endocarditis. (Btw, one needs to wait 3 weeks after antibiotics before doing them). But he said: "I promise you that it will all be ok in those labs".

I wanted to hug him and went home happy.

I sent his letter to my wg dr. today and he still thinks that I must take antibiotics for a long period. One is called Flagil. I am not going to take it. It can cause psychosis and with all my sick body I am not giving up on my brain. Enough is enough. The other antibiotics is Doxylin which I KNOW already what a yellow crazy diarrhea it is going to cause me.

I don't want to take antibiotics just because he can't see that its a wg flare: the night sweats, low fever, coughing and "pneomonia", crazy joints pains, and the bleedings under the nails, fatigue and signifcant improvement on higher pred. And dramatic drop in hemoglobin (from 12 to 9.7)

Does it sound like wg flare to you ?

Not counting the diarrhea anymore because it belongs now to my second disease, the collagenous colitis.

And on the top of it all, I dared to eat two cucumbers and spent hours again with the damn crazy wattery diarrhea. Never again cucumber.

Any input will be greatly appreciated. Thank you all for being here. God bless you ❤

[Pete]

I googled collagenous colitis (CC) before responding just to learn a little more about it. CC, like wegs, has no known cause. Antibiotics don't work on wegs, so I wonder why your wegs doc wants you to stay on antibiotics. Some antibiotics cause diarrhea as a side effect, so you might get some relief by discontinuing the antibiotics.

Is it possible that you and your wegs doc and the pulmonologist can all talk together at the same time? It seems to me that they're working at cross purposes within their own respective specialties. The goal of this conversation should be to accurately diagnose your current conditions and provide you with a treatment plan that will work.

Good luck!!

[Rose]

All my flares have been whilst I was on maintenance treatment just like most WG patients. The response to a flare is a temporary increase in current maintenance medication usually just prednisone. Should the flare start to subside the treatment is then gradually reduced whilst symptoms are constantly monitored. When the flare symptoms have gone then maintenance treatment is resumed. From my own experience and from what I have read here, most people flare whilst on maintenance treatment. I have been on the same maintenance treatment since January 2009 with increases in pred only on the few occasions when I have flared. I dont understand why your doctor has said that you cannot flare whilst receiving treatment. Maybe it is different with RTX.....I dont have experience with that drug. All the best Alysia. Hope you get some answers soon.

Rose

[Aneinu]

Wow.
Firstly, I hope and pray that you feel better soon.
Secondly, some of those conditions do sound like wg flare. The doctors in the clinic believe that rtx does not completely prevent flare ups for my son, as some people react differently.

As an aside, my son has been cleared to study in Israel and he is on a flight now. The 1.5 doses of rtx, plus pred, plus the Imuran is keeping wg in check. His hemoglobin, kidneys, joints and more are all thank God in his working condition. Ct on lungs was positive.

We have been referred to a Dr philip haskes in sharei zedek.

Keep us posted please.
Be well.

Sent from my SM-G920V using Tapatalk

[Alysia]

Wow, Aneinu it is so amazing that your son is in Israel right now. I sent you pm. Please check it. I googled his dr. in Jerusalem and he looks like a real expert. He is pediatric rheumy and was in the list of the best docs in Israel.

Thank you so much Pete, Rose, Aneinu and all the others. I couldn't have make it without you all.

Pete, your idea that they will all communicate for real and not just in letters, is wonderful, but not possible. Each one of the 3 docs I mentioned above is working in a different hospital and clinic.

Thanks for your input Rose and Aneinu. I do think that one can flare while on rtx. If anyone around knows more about it please tell me.

I wrote to my wg dr that I am afraid that my poor stomach will not like the doxylin, but he insisted and wants me to take also bactrim. I was on it in the past but it elevated my liver enzymes. He thinks that I have Q Fever and not wg flare. I doubt it.

And I am tired. I told my family dr.:

"one needs to be healthy in order to be sick".

[Gab122]

I wish I could heal you Alysia. [emoji26]

[Alysia]

I am feeling much better. Thanks be to God.

I have found a new decent gastro dr. who put me on Budezon (like pred but specific to the colon) which is a good med. Almost no diarrhea. I still can't eat veggies and fruits and if I try I get stomach pains all night long. (I try some, then regret; never peaches again. Never.) But I can now take multi vitamin. So it's ok.

My joints are calmer. A bit aching still but not as before. The coughing is much less. The bleedings under the nails stopped.

My Q Fever labs came back the same again. On the border. Not sure what to do with it.... I really don't want to take nasty antibiotics like my wg dr. told me to take. It will kill my poor colon. blood cultures came back negative so that's good.

I saw my lungs dr. yesterday. I told him about the disagreement between my wg dr, who thinks that it was not a wg flare but Q Fever infection, and the Infectious Disease dr. who said that it is not Q Fever.
The lungs dr. also thinks, like me, that it was wg flare. We compared the labs after a month of more pred and month and half after rtx, and things got better.

I can say that the following labs were abnormal because of wg flare:

paletlets were greatly higher. Now in the norm.
hemoglobin was lower then the norm. Was down to 9.7 and now it's up to 10.2. Without taking iron pills. Still low but better.
ALT was higher then the norm. Now it's ok.
Fe iron was much higher then the norm. It is higher in case of inflamation. Now it's back to be under the norm (because I am anemic).
Pr3 was higher then the norm. Now it is not.

So my lungs dr. was happy about it. And also happy that according to the heart echo I don't have endocarditis (infection in the heart valve) which is why he wanted me to go to the ER.

But,

The heart echo shows pulmonary hypertension. So he sends me to check nocturnal hypoxemia in a sleeping lab (to check if I get enough oxygen when I sleep).
Does anyone checked it and knows how it goes ? I hope I will not need to sleep there...

and -

Something in the Spirometry test that his nurse did to me, was not ok. PEF 59%. Anyone knows anything about it ? The lungs dr. said that it might mean that there is an obstruction in the bronchi and or trachea because of wg. So he sends me also to high resolution CT. Any info about airways involvement is very welcomed.

Keeping me busy....

He asked how do I understand what to look for when talking about wg, so I told him about the forum :)

Thank you all for being here. I love you. God bless you all ❤❤❤❤

[Aneinu]

We are praying for you. Sounds like you're on a positive upswing which is good. May God guide you and the doctors the rest of the way.

Sent from my SM-G920V using Tapatalk

[Pete]

I'm glad to hear the mostly good news.

Regarding the upcoming trip to the sleeping lab, I'm guessing that you'll have to spend some time sleeping there so they can observe the phenomenon as it occurs. I don't know what apparatus you'll be connected to.

Are you taking any medication for hypertension? Over the past year, my BP started creeping up. (I had been off all BP meds for five years after my big flare in 2012.) I now take 60 mg/day of niphedipine, and that's keeping my BP solidly in the normal range. When I had my stress echocardiogram a couple of months ago, they indicated pulmonary hypertension in the report, but are not treating it beyond the niphedipine that I was already taking.

Hope you get the answers you seek. Also hoping for your continued improvement.

[Alysia]

Thank you for being so caring and thoughful, Pete. I guess I need to start checking my bp.

Thank you so much for your prayers, Aneinu. Praying for Yosef. May God bless him and heal him.

[Alysia]

My lungs CT results came back. There is a new tiny nodule. I will see my lungs dr. next month. I think this nodule confirm that what I had was indeed wg flare and not something else, any infection, like my wg dr. thought. So I hope that I dont need to take the 3 antibiotics he wanted me to take. So, good news for me. I never thought I will be happy with a nodule. I knew those antibiotics will kill my stomach.
I am still on high steroids for my colitis. An amazing med: budezon. It works specifically for the colon. Rose it is worth checking. It has much less side effects compared to pred.
I am down at 5mg pred now and feeling extremly tired. I guess it is what it is.
Thank you all for being here. I love you. God bless you.

[mishb]

I'm glad the budezon is working for you. It must be such a relief to feel a bit better in that area.

It seems so quick for you to have a flare after your last RTX, that sucks. I wonder what the plan will be now :crying:

Keep taking care, and hopefully, come July, you will have some more answers

[Alysia]

Thanks Michelle. You are so kind and caring and I love you ❤
The rtx is working like a normal curve - most impact (higher curve) is around 3-4 months after getting it. Less impact is at the "edges" of the curve, after 6 months or right after getting it.
I got it on March and the flare was between Feb and April, so it makes sense.

I think that my second disease "confused" the system, making it "thinking" that there is an attack, so it attacked back, that's why I flared.

[Lilly]

OOPS!!!!!.....It has been too long since I have been a regular on here, that I have forgotten how to use the system! I see things have progressed somewhat well for you and you are doing better with your colon issue. I Love you Alysia....Always in my prayers. /Hi Dear Friend Alysia, I have just read your post and am so sorry for your issues. We weggies are what my Cardiologist calls "wild cards" because a lot of times, normal tests like blood tests, and some procedures , will not read correctly with us.....for instance, when I was diagnosed with DVT and PE, my dr said that the normal test called a "D-dimer" that tells if you have a blood clot still in your body, would not be accurate.....so he needed to put me on a med that he was sure would keep me clot free. So I guess what I'm saying is, .... When your results come back, I pray you will find answers, but if labs cant find the germ....he may have to treat what he "thinks it may be". If you have all the symptoms of a certain germ, but labs don't show it, you may still have it, but out bodies sometimes work against these tests. I probably confused you, but I hope your Dr. finds out what is going on. I am sure they have checked for Ulcerative Colitis, my niece has that autoimmune dz. and had similar symptoms you describe. And she passed out in the bathroom several times. I am praying for you, You are always here for so many of us. I love you, and pray for drs to find out what is wrong.

[Alysia]

Dear Lilly , Thank you so much for your thoughtful comments, caring and kindness. I love you and I keep you in my prayers. God bless you ❤
I got some answers: I have microscopic colitis, subtype called collagenous colitis. Its also an AI disease and I get Budezon for it (similar to pred). I also had wg flare but I think its over now.
"Wild cards" is a nice name for us. I like it 😊😊