Blood Clots and Weggies

[Sangye]

I'm starting this thread because it's so important for all of us to be educated about blood clots and Wegs. A famous study (WeCLOT) found that Weggies are 23% more likely to develop clots than non-Weggies. They don't know the exact mechanism but suspect it has to do with the generalized inflammation of blood vessels. Another huge study in 2008 confirmed the WeCLOT results.

Most docs will know to look for clots in patients with certain autoimmune diseases that are well-known for their predisposition to clots. The patients are usually well-educated about the risks and signs. Since Wegs is not on that list, ER docs and regular docs (ie non-Wegs specialists) often don't know about our increased risk.

I got clots the first week I was diagnosed. I was in the hospital on massive pred with hemorrhaging lungs. I got up to use the bathroom and my calves went into full tetany (full muscle contraction) as soon as I stepped down. I knew it was clots. We did an ultrasound within the hour but it was negative. I was discharged 5 days later and remained in crippling pain for 3 weeks. I was told to walk around and take magnesium. I was almost fainting from pain and an indescribable sensation of dread. Three weeks after they started, I had so much trouble breathing I demanded a chest CT. My pulmy thought I was nuts-- my pulse ox was 100% (at high altitude, despite lungs hemorrhaging and being on oxygen), and my lungs sounded clear. He did a CT of legs and lungs-- I was totally packed with clots. We have no idea why none went to my heart or brain. NONE of my original docs knew about WeCLOT. They were baffled as to why I got clots.

Clots in the legs are called DVTs (deep vein thrombosis). When they break off and travel to the lungs they're called PEs (pulmonary emboli).

Here (http://www.webmd.com/dvt/deep-vein-thrombosis-dvt-symptoms-diagnosis) is info about symptoms, diagnosis, etc....

Some facts about clots:
1) My JHU Wegs doc--Dr Seo-- has said that the highest risk occurs when Wegs is active. Clots can ALSO occur when Wegs is in remission.

2) Weggies can get clots even if they're active, and even if they're on massive doses of pred.

3) Clots don't always show up on the first leg ultrasound. Ultrasound techs have told me it can take awhile for clots to "organize" enough to be seen on US. Many docs don't know this. If your symptoms persist, ask for a repeat US.

4) Even if you're on coumadin, you can still get clots. Either the coumadin is not enough to keep one from forming or your INR goes too low and a clot forms. (INR is the lab test for measuring clotting time) I got new clots in less than 3 months while on coumadin.

5) Weggies who have had clots may need to stay on coumadin for life. Here's one place where our Wegs docs may not have the best answer. You must see a highly-skilled hematologist to make the call. Dr Seo thought I could go off coumadin as long as my ESR and CRP were okay and Wegs wasn't flaring. But he sent me to the chief of hematology at JHU for his opinion. He said no way-- for life.

If you only have 1 DVT, your risk of future clots is higher. But if you developed a PE, your risk is MUCH higher. Also, anyone who gets clots is automatically tested for genetic factors that predispose you to clots. I have a partial gene, which makes me only slightly predisposed. So for me, Wegs + tons of DVTs + tons of PEs + heterozygous Factor V/Leiden = Coumadin for life.

Okay, I'm going to save some info for another post. This is long enough!

[JanW]

Sangye - did you start the thread about supplements and I missed it?

[Sangye]

Not yet! I was in bed most of yesterday. :(

[Col 23]

Thanks Sangye for the informatio on clots. Very informative, awareness and constant education appears to be the go with WEGS. Maybe I didnt want to hear it- but reality is what it is with WEGs. One day at a time and continued/constant monitoring of ourselves. Every day I wake up I think, how am I today. Mentally getting my head around the fact that I have a chronic illness is still difficult for me. My new normal as you guys describe it, still doesnt sit well.
Col 23

[Brooke]

Thanks Sangye~
I was not aware of this.
I had a DVT when I was 18 years old in my right calf. I am now 29 years old and knock on wood, have not had another one. I have a protein s deficiency and I was also on the birth control pill back then.
Do you think it could have been Wegener's way back then? I had no other signs of Wegener's, not until I was about 22 years old.

[elephant]

Thanks Sangye for all that you do to help us out. I had a DVT when I was 16 years old, so I am on top of any swollen leg...a few months ago had my whole left leg ultra sound.

[Sangye]

Brooke, please make sure your doc knows about your history of DVT, protein S deficiency and the incidence of clots with Wegs. You should definitely see a good hematologist to evaluate whether you need to be on blood thinners as a prophylactic. They'ill determine how high your risk is, and how much the protein s deficiency contributes. I suggest you see a hematologist at a major teaching hospital--they're the most up-to-date on things.

Before I came to JHU, the other hematologists I saw were too afraid to do anything. One at Mayo Arizona said I'd need to stay on Lovenox for at least 5 years. Never mind the fact that Lovenox destroys bone at an alarming rate. And never mind that 1 shot per day costs almost $6,000 a month!

My JHU hematologist said it wasn't a coumadin failure, that coumadin was much safer than Lovenox and that I needed to be on it for life.

[Sangye]

Female Weggies who are on birth control pills should definitely see a hematologist to evaluate your risk of getting clots. Gynecologists obviously know about clots, but they don't know about Wegs and clots. A hematologist can order blood tests for inherited genes that predispose you to clots if you're on birth control pills.

[Brooke]

I can never be on birth control pills again, due to my protein s deficiency and clot. I was only on blood thinner for a while, a year maybe? They said if I were to get another clot, then I would be on a blood thinner for life.
Of course, I was on a blood thinner during my pregnancy in 2006 as well.

[pberggren1]

So Coumadin and Lovenox are blood thinners?

[Sangye]

Regarding blood thinner management:
When I was first put on coumadin, they said I had to eat the same amount of high vitamin K foods each day, no matter what. It was extremely difficult and stressful. The hospital coumadin nurse and my docs all insisted that this was the way it was done. And if you research it online, you'll find countless recipes for how to live like that. When my JHU hematologist put me back on coumadin, he said that way of managing it is totally outdated. They know the healthiest foods are high in vitamin K. All the veggies that prevent cancer are, too. So to limit them is ridiculous.

He said the new way of managing coumadin is that you eat your usual diet and they increase the coumadin to suit you. Most people don't vary their diet much over the course of 2 weeks, but they do vary it day to day. Right now, I eat whatever I want. I eat lots of high K veggies and don't worry about it, since there are days when I don't eat any K at all. I stay mindful of it, but it takes very little energy and really no stress.

He also got me a home INR tester--larger than a blood glucose meter but also uses a finger stick. The finger stick is a bit deeper because it uses more blood. You test once a week and can adjust your diet and/or coumadin accordingly. It keeps it from going way off track. And, no messing up your veins. They're as accurate as a vein stick, but because they're new, you can expect many docs to tell you they're not as accurate. My hematologist and I did simultaneous finger stick and vein stick and got identical results. Medicare covers them if you have a history of DVT and have been on coumadin for at least 3 months. Most insurance follows Medicare rules.

Between being able to eat what I want and test at home each week, I'm a happy camper. Coumadin isn't running my life.

[renidrag]

I do knoow Coumadin (Warafin) is a blood thinner, I was on Lovenox for about 15 days and I want to tell you it was about 14 too long. My lovely bride injected my belly each morning and within a couple of days it was one giant bruise. It really did not hurt, just another aggravating med. I think the lovenox and coumadin work together for a while until the Coumadin can be used exclusively to control the INR. Mine right now is 2.6 where they want it, but it took a while to get there. I also did previously have a DVT and PE. Imagine, less than 20 years ago the WG would have killed me and if not that, the PE for sure. Medical advances are wonderful, if not fast enough. Even microwaves and computers are too slow today.
Dale

[Sangye]

After about 3 weeks on Lovenox, it starts to form large nodules at the injection site. They're incredibly painful. And by that time, you run out of bruise-free areas and nodule-free areas and have to inject right into them. Holy cow painful! Whenever I wound up in the hospital, nurses would say "Oh, you already do your own injections, so you can do them here, too." I said no way-- it was much less painful to have someone else do it. It was the only good thing about being in the hospital!

Even though I've been off Lovenox since Dec 2008, I still have several of the nodules and they're still painful to press on.

Coumadin takes several days to start working. Lovenox works right away. So they use Lovenox as a "bridge" to anticoagulate you until the coumadin kicks in.

I'm with you about being grateful for these modern diagnostic techniques, Dale. Without that CT that morning, I would have been dead by the night.

[Brooke]

I had the injections during my pregnancy, I would usually have my husband do it. I don't remember them being too painful.

[renidrag]

You are right about the nodules, I still have one and it does still hurt.
Dale

[Col 23]

I have nodules in my legs that commenced prior to dx and some have gone away but not all since being on mtx and pred. I also get swollen knees and ankles and at night I have to keep moving my ankles as they feel uncomfortable not painful but very difficult to describe - some thing to do with the nerves I think. I still have nodules above my elbow also. Is this connected to this thread.
Col 23

[Sangye]

Nope! :D

We were talking about nodules in the abdomen that form as a result of heparin injections.

(The nodules you're describing are common with Wegs. When Wegs is active for me, I get all squirmy at night. Not "restless leg syndrome" but generally can't lay in bed without constantly changing position. It's a 100% accurate predictor of highly active Wegs for me)

[Col 23]

Yes I had that before dx. Off for tests next week anyhow. If it is active Ill know in future that thats an indicator that its becoming active again.I also toss and turn most of the night. I want to swear right now....
cheers Col 23

[Sangye]

I'm going to start a new thread called Weird Wegs Symptoms. I'd really like for this thread to focus on blood clots as long as possible, understanding that at some point all threads lose their focus.

[Col 23]

I wonder if its possible to cut and paste somethings in to relevant threads? I know we get off the thread sometimes but to answer Elephant - are you serious, what happens with the vessels. Now I will swear.
col 23

[elephant]

Col, wegeners disease pretty much can cover all our vessels head to toe. But it is rare to attack the brain ( head) area...but it can happen. My cardiologist stated I was risk for heart attack and stroke with wegeners disease....that is why it is so important that we stay on top of our symptoms so that we can control the WG.
As for as the insomia and restlessness...who know's.
So eating a healthy diet, no process stuff and getting exercise reduce's our risk of both. Any type of exercise ( walking, biking, hiking, swimming, pedal cycle) helps to prevent a blood clot from sitting on a vessel. Exercise does more than that...makes you feel good and research stated that it helps mild depression.

[Col 23]

Thanks for the info. Its a whole new way of thinking for me and the info just raises my awareness. I know some of the questions appear superficial at times but the feed back really brings it home. For me the little nags and worries get sorted by this support. Thanks heaps
Cheers Col 23

[DEE]

HI EVERYONE thanks Sangye for starting this post
another learning carve beginning to take onboard things about bloods clots now brain is functioning again
wish id been made more aware before last monday it was such a scarey experiance
things happened so quickly and so out of my control
always told it could happen but not what to expect !
now discovering i have multiple clots in upper and lower right lung makes it very real
the first thing they did was stop HRT meds but they said hard to say why and when because of all meds we take plus ive just has kidney biospy done
although ive been telling wg consult and gp that i had pain in right side for aleast three weeks and they thought it was muscle strain for a cough ive had as chest x ray clear and chest sounded clear but im not so sure now
but enough of the what if its happened and ive got to deal with it
going for INR test again this mornig and full bloods and LFT and to meet Warfarin nurse then later today back to see gp who i must say was a great support last monday
just good to be able to breath easier friends that visited yesterday said they felt they wanted to breath for me one their last visit as i sounded so breathless
will let you know how i get on thanks for all your support through this recent crisi s
DEEx and BARON

[Sangye]

Dee, you mean they don't realize it's because of Wegs? Tell them to do their research. Okay, you can be more polite about it than that, but they should know.

[DEE]

Most of the doctors or sudents doc spent time on the internet looking things up because the nursing staff told me
my wg consult wasnt available so it was good that i could remember things that u all told me in post so i could say we need to ....
on the sunday morning started with earche and nose and sinus relly painfull . face statred to swell and i was brave for me told them i need to the doctor so i could get the anti b that works for me when this ocurs tablets sorted within twenty mins or less DEE X

[Nancy]

Thanks Sangye, I had a blood clot that went from my ankle to my inner hip while on a flare with high dose prednisone. I was very active with 4 x week aerobics class. I "knew" I had it - but was in denial until I mentioned it to a doc that I had worked with. He just asked if I wanted an ultrasound and sure enough it was there. I decided to stay home and self treat with Lovenox and then tried coumadin. I could not stay in a therapeutic level with coumadin no matter what we did - same dose I was too high and then within a day or too not even close to therapeutic - so we stopped it. My WEGS doc never discussed any connection that he knew of... I do not have deficiency that I know of - but it fought all reasoning as to why that occurred - no issues since...(knock on wood!!)
When you mentioned in another thread that you would like to get back to work - what were you doing as an occupation? just curious due to the highly informed informtion that you discuss on a daily basis.... I will also look into the medicine that you suggested - I have never been given a different choice from CTX/PRED - trialed Methotrexate 1 x - no effect... Lots to think about!

[Sangye]

Wow, Nancy-- you are proof positive that clots can happen with Wegs at any time. Amazing, even with you being highly active like that! I was ambulatory, but had been quite compromised for months due to weakness (profound anemia and SOB w lung hemorrhage, and severe pain).

I had trouble staying therapeutic with generic coumadin (warfarin, for those who don't know). My hematologist switched me to brand name Coumadin and I've never had a problem. I've since learned that drugs requiring precise dosing should be taken in their brand name form, since generics can vary with manufacturer. This would include coumadin and meds for seizures (also used to treat bipolar disorder).

I'm a chiropractor. We're well-trained in the major sciences (eg physiology, biochemistry, neurology) and diagnosis, but not in pharmaceuticals, since we don't prescribe. I've learned a lot since I got dx'ed with Wegs-- about the drugs, the disease, etc.... It's kept me alive.

A major study about rituximab came out last fall. It changed everything about the way Wegs is treated. They've been studying rtx in trials for a few years but this was a large study that compared cytoxan to rtx. It concluded that not only was rtx as effective as ctx, but it was slightly more effective and doesn't carry the terrible risks and collateral damage of chemo. I've failed on ctx twice and my Wegs doc said I can't use it again. I can't take mtx--got pulmonary infiltrates/ pulmonitis right away-- and mtx isn't effective for alveolar hemorrhage anyway.

I did a round (once a week for 4 wks) of rtx last October and again in March. Your doc should definitely be talking rtx with you. I couldn't sleep last night and was thinking about how they're not doing a good job controlling your Wegs if you have flares every 1-2 yrs that are so severe they require ctx.

[Nancy]

Well Sangye - not certain that it was severe - I had coughing and some hemoptysis - but never stopped working 40-50+ hrs week. No aches pains, no neuro involvement... They just stuck me on CTX oral everytime... The WEG rheumy I see is a WES focused Rheumy - it is sort of making me question treatments and activities. I saw him just recently - noted aches /myalgias/neuropathies/insomnia - sort of like you discussed - unable to sleep due to twitchy at night - lots of night sweats, mild bloody discharge from right nare - he said I looked ill - but my lab tests were good. Offered me an antidepressant - after I told him I quit my job to take time off. I am not a depressed person - I told him I was just tired... Maybe he is used to me and quick recoevries after 10+ yrs.. I felt very frustrated about his reaction... Like I should go home and stop being "excitable".... Although labs from Jan are clear - I still have symptoms and that was what I discussed with him... Very nice guy - but like I said, hearing others and their experiences is very thought-provoking...
I figured you for someone in the healthcare field... sucks when we are hoisted by our own petard... :-)

[Sangye]

What's a WES doc?

When I was first dx'ed, my lungs had been hemorrhaging for 3 months. After 8 months with increasingly severe joint pain, I developed a mild, non-productive cough. It didn't go away and I became more SOB. A chest x-ray showed infiltrates suggestive of atypical pneumonia. I tried treating it holistically as mild pneumonia but I got more SOB. I also began to develop anemia. Still, no blood coughed up and only a minor dry cough. A repeat film showed worsening. By then I was losing blood hand over fist. My hemoglobin dropped 3 points in a week. I stopped getting a period. I was as white as you can get and walking 5 ft forced me to heave for breath. I coughed up occasional specks (1/4 pea-sized) of blood a couple times a day. The radiologist suggested a CT scan, which demonstrated massive hemorrhaging ("ground glass opacities") in all lobes. I was filled up with blood and it never came out.

When my lungs hemorrhaged again last summer, it took months to cough up blood and it was quite a bit! Still, the non-Wegs docs in the hospital were not impressed by the amount of blood and thought it was bronchitis. My Wegs doc has said that any blood is alveolar hemorrhage and is considered a severe flare.

Your other symptoms suggest very active Wegs. For him to ignore that obvious clinical picture and hand you an anti-depressant scrip is dangerous. Can you ask him to consult with a VF doc? Better yet, can you travel to a major center? They can guide your treatment but you'd have direct contact with them.

[elephant]

Nancy, I would see a Wegeners specialist soon. I travel by car 20 hours round trip, but it is worth it. The more damage that goes on in your body the harder it is too get back to normal. Just look under the VF website. I go to Cleveland Clinic, I am sure by now everyone on here knows that. Wish you the best. :)

[Nancy]

Hi Guys - well the "funny" or potentially "bad" thing is - he is one of the VF docs on the website....
Sorry Sangye - I missed a letter - it was supposed to be WEGS...as in MD. I had been taking oral CTX always before and asked about the IV route with decreased hemmorhagic cystitis potentials - he told me that 90% of his pts were only on IV. I asked why a change had not been considered before I asked - he really did not have a good answer... He is a specialist with WEGS. I am just not certain he is ready for me to be "ill"... does that make sense...

[Sangye]

I'm shocked that he has so many patients on IV ctx when it's so well-known that it's less effective than oral. I'm also shocked that he would repeat ctx so often and not even talk about rtx.

I understand the part about him not being ready to see you sicker. My Wegs doc thought I was doing okay last year too, and attributed increasing symptoms to Wegs damage and being out of shape. I knew it was Wegs, but truly it wasn't clear. By the time it was obvious, it was too late to increase the Cellcept and avoid the big guns.

I suggest you have an open and honest discussion with him about how you feel. You need to have a doc who really understands you, Wegs and how those two fit together.

[Nancy]

Thanks Sangye - will probably have to do that... I do not think that the IV was good anyway - nausea was not great.... Hey I added an avatar as requested... This is not My baby - but my mastiff is just as pretty sans Beret.....

[pberggren1]

I get these wierd pulsing or bubbling sensations in what I believe to be my veins. It happens in my neck, arms, legs, and sometimes head or chest.

Anyone else ever experience anything like this? I thought maybe it could be related to blood clots?

I have also had these lumps under my skin in various places such as arms and legs since abut 2004. My GP said they were normal and I never persued it any further.

[Sangye]

Nancy, I love your avatar! So cute! Mastiffs are adorable.

Phil, I get that too--most often in my legs. I don't think it's related to blood clots thankfully. I don't know what it is, but it feels like coffee percolating. The lumps might be Wegs-related. Your rheumy should be able to tell, even if s/he's not a Wegs specialist.

[Lola]

Part of my job is to educate cardiac patients about Coumadin and to adjust their doses while they are getting therapeutic blood levels. I was speaking with a gentleman today who has a DVT - deep vein thrombosis or clot in his leg. Afterward, he told me he'd forgotten to list one of his medications - prednisone. So I casually asked him what it's for. Turns out he has a form a vasculitis - temporal arteritis.
He asked me if an injury he'd had earlier this month could have caused the blood clot.

Then my mind remembered Sangye's information about Wegs patients having 30% greater risk of blood clots! Of course. He had been sitting for a month due to this injury AND he has vasculitis. No wonder he got a clot. I told him that he might want to mention this bit of information to his primary care doc. Fortunately he is on Coumadin now. It's just amazing how we all help one another. Thanks.

[DEE]

just a note to say now on week three after having multi blood clots in lung feeling better the pain easing with help still cant lay flat still sleeping for ever !!! but inr beginning to get sorted
new results show nearly within target range for warfarin
due to see wg consult this thurs pm as i have not seen him since this happened as was treated at sister hospital for clots and hey kept cconsult informed
only prob arising from hospital stay is they took me off HRT treatment possible cause among many for blood clots which gives would you believe even more hot sweats :)
interesting i had a biopsy way back when a consult thought i had temporal artertis not a very nice biopsy had i done by local anthe had raging headache aftrwards was not dxt for another eighteen months afterwards with wg because of so many results coming back negative it was only when my present consult looked at the overal pic things got sorted
but back to were started i wish i had made myself more aware about pos of getting blood clots maybe i would have acted quicker just good news as Sangye said caught early and only one iung affected
DEEx

[Sangye]

Lola, the risk of clots in Weggies is "only" about 23%. Just want to make sure the right info is out there! How wonderful that you were able to help him. Maybe they will find that TA predisposes one to clots like Wegs. They've only learned about the Wegs-clot connection since 2005. There were suspicions before, but the WeCLOT study was the first large study to measure the incidence.

Dee, I can't believe they've kept you on HRT while you've been on pred. Both seriously affect the endocrine system. Not good.

[DEE]

Sangye you know me always do as the doc ask had a three month break at one point but was told best i went back on it because off my age ! wish i had not now have hot moments due to preds plus moments due to not taking hrt usually about 6pm when new tablets are making me feel sick but before you start to nag me :) yes i will start to ask more about why i am been given meds something im have not been good at in the past but i will do DEEx

[Lola]

Thanks for the corrected info, Sangye.

OK, I over preached to him, and don't have the old crack memory I used to have. At least he will be aware, and so will I.
I would be a good fiction writer, I tell 'ya.

[Sangye]

I think you did great. It just makes good sense that a vasculitis might predispose one to clots. Maybe TA does-- I dunno!

[jenjenn711]

Thanks so much for the info--I wish I'd known this sooner and I will be highly encouraging both my parents to join this group! My dad is the one with Wegener's. Last time I posted (a couple of weeks ago?) we were almost certain his Wegener's was coming back, and we were right. He got put back on his meds and a few days later got nauseous and dizzy and couldn't walk. We called 911. After a bunch of tests and a couple of days in the hospital, they confirmed it was a stroke and he had some other minor blood clots in his legs, too. He is now in rehab and should be coming home this weekend, but it makes me so angry that this all could've been prevented if only his doc had thought to put him on a blood thinner! He already had a history of clots, so it's not rocket science, and the doctors he is seeing now basically said as much. I am just baffled at how someone supposedly so highly educated can be so careless. He is now on Coumadin and a couple of other things, plus a special diet, for life. I am pretty concerned about how he's going to do with all these different drugs, though. His skin tears easily as it is and now it'll be harder for cuts and scrapes to heal, so we're terrified he might fall because of the stroke and lose a lot of blood from an injury :-(

[Sangye]

I'm so sorry to hear about your dad having a stroke and clots. Please read the first few posts in this thread about coumadin and diet. If they're telling him to limit his Vitamin K they're going about it the wrong way.

Falling is a major concern. He should continue to get PT for awhile to regain balance. You can ask his PT for advice on how to limit falls in the meantime.

I forget-- is he seeing a Wegs specialist?

[Jack]

I take Warfarin to prevent blood clots. It is protocol in this country that if you have more than one episode of clotting problems or are high risk, you remain on medication for life. I also have paper thin skin, but don't find that excessive bleeding is much of a problem, I just tend to have permanent bruises to my hands and often other parts too.

Please do all you can to protect against falling. I have just spent two months in hospital due to a fall and I'm struggling to regain my mobility.

[DEE]

Jack ive just got INR results back and levels have dropped therefore tablets gone up which i understand
could the fact my cough not getting any better have a conection just thought id ask cant get through to doc just now thanks DEEx

[jenjenn711]

I am all for my dad going to see a specialist, but he has never been the type to travel long distances for any reason and is nervous about big cities (he's a country boy). He is currently seeing a rheumy an hour away who is the same guy who did NOT keep him on Coumadin for life even after he suffered a painful blood clot in his leg a couple of years ago. My dad told me he treated a lot of people with Wegs, but if he didn't even know to keep my dad on a blood thinner, obviously not enough! Anyway, my parents are convinced my dad can't travel anywhere because if he sits too long with his legs hanging down he could get another clot. What guidelines do you follow for traveling with blood clots and active wegs? Do you think it would be worth it to travel up to 10 hours in the car? Would you do it now or wait a while? My parents also think he can't fly, and I'm not sure if this is them being way overcautious or if they're referring to valid concerns about not being able to move around, altitude, etc.

[elephant]

I know how you feel about traveling, I worried about getting blood clots too when I traveled 10 hours to cleveland clinic one way. You could just break it up and make sure he gets out to move around every 2 hour at least. That is what I did.

[Sangye]

Even though clots can still happen if you're on blood thinners, it's much less likely.

I'm sorry, but I can't tell you that anything short of seeing a Wegs doc is okay. I can't stand big cities either, but avoiding one is not worth my life. If that were my dad, I'd convince him to get in a car or plane and get proper help. It can take a few weeks to get into a major center, so start now.

Every member we've lost since I joined this group (Nov '08) has had one thing in common: No Wegs specialist.

[jenjenn711]

Thanks for the advice. I absolutely agree--if it had been my husband with the wegs we'd have been to a specialist ASAP. It's my stubborn dad though, so I have my work cut out for me!

I talked to my mom about the diet, and after some pressing she admitted that the dietician actually DID describe a non-extreme diet in which Coumadin is adjusted to accommodate balanced food intake. But what my mom heard was something along the lines of "spinach causes clots!" I gave her the info on here and I think she sees that was extreme.

[pberggren1]

I'm just curious Sangye. Do you know how many members have passed on since you joined in Nov. 08?

[Jack]

I have recently been confined to bed for several weeks and the hospital made me wear pressure stockings in addition to the blood thinners. I would think that this was a good additional precaution for traveling if you are at risk.

[jenjenn711]

For someone in this situation, would you fly or drive (if the drive was ~10 hours)? Is flying safer because it's faster? Has anyone's doctor given them advice on long-distance traveling? My parents for some reason think they can't fly. I am getting my mom onto this forum tonight :-) Thanks so much for the advice--it's been a BIG help!

[Sangye]

My docs have never recommended one over the other. The only important thing is that you get up and walk around as much as possible. When seated, do ankle circles, and little leg exercises to keep blood flowing. I'm sure you can find simple suggestions if you google. There are also great travel socks that help move fluid up the leg. Don't get TED stockings-- those are only for bedridden.

[Jack]

There are also great travel socks that help move fluid up the leg. Don't get TED stockings-- those are only for bedridden.
I did not know there was a difference - any more info Sangye?

[JanW]

That's interesting that you say that Sangye, my podiatrist told me to get those for everyday wear on the leg where I have the swollen ankle (I got them but only wore them for a brief while because they didn't really work).

[Sangye]

When I first got clots my pulmy gave me TED (anti-embolism) stockings to wear for 6 months. I wasn't bedridden and I believe that's what caused my leg to burst open into a vasculitic ulcer. I didn't learn about this until 3 yrs later when I researched compression stockings online. They all state very clearly that anti-embolism stockings are only for bedridden patients, and that once you're discharged from the hospital you should stop using them. Don't expect most doctors to know this. None of my other docs picked up on it, either. Every one of them thought I was crazy for having problems with the TED hose. I was on high-dose pred which caused severe swelling of both legs, as did the huge numbers of blood clots and the uncontrolled Wegs. I told them that it felt like my legs were expanding each day--worse when I walked--which made the hose tighter and tighter. It was living hell.

If you google "compression stockings" you'll find lots of good info on which level of compression is best for you. As the sites say, don't use 20-30mm Hg or higher unless your doc tells you it's necessary.

[DEE]

i wear 18-24mg compression knee high opened toe stocking ihave worn for awhile and get great reilef
in therary im to put on before i get out of bed and take off as i get in
a few weeks ago i was fed up with it especially as it is warm !! tried going without for a few hours , not a good idea :) spent the next few days trying to get the swelling down !
so decided to carry on as doc says its doing what its suppose to do DEEx

[Brooke]

Sangye~ I also had to wear a TED Hose stocking on my right calf when I was diagnosed with a blood clot 10 years ago. I was told to wear it all of the time. I did for a while but then stopped for many years. I recently started wearing it again because I am getting a lot of fluid in my legs. It seems to help with that.
I did not know they were for bedridden.

[Sangye]

I want to clarify this: TED hose (aka Anti-embolism) stockings are a type of compression stocking that should only be used when bedridden. There are lots of compression stockings on the market that are made for ambulatory people. The TED hose are clearly marked "Anti-embolism."

Last year I found a great article online detailing exactly why the TED hose are dangerous for ambulatory people, but I can't find it again.

[Lightwarrior]

So Coumadin and Lovenox are blood thinners?

Yes, Coumadin and Lovenox are both blood thinners. Lovenox is given sub q (abdominal area where most fat is) as an injection and coumadin is a tablet. Both require frequent blood testing to make sure levels stay therapeutic.

[Sangye]

Lightwarrior, Lovenox doesn't require blood testing.The dose is based on body weight. It uses a different mechanism of action than coumadin and isn't affected by vitamin K levels or diet. That means the levels don't fluctuate in the blood like coumadin. I was on it for 2.5 years. (Edit: 2.5 stinkin' years)

[Lightwarrior]

Lightwarrior, Lovenox doesn't require blood testing.The dose is based on body weight. It uses a different mechanism of action than coumadin and isn't affected by vitamin K levels or diet. That means the levels don't fluctuate in the blood like coumadin. I was on it for 2.5 years. (Edit: 2.5 stinkin' years)

You are right, they were testing his PTT when he was on iV Heparin in hospital, now he is getting PT/INR tests and won't be able to stop lovenox until coumadin is therapeutic, which it is not yet and i am still giving him 90mg (high dose is 1mg/kg) twice a day.

[DEE]

just been for scan on liver and gallbladder this morning things looked ok will get a more detailed report week on thursday
but the consult radiologist thinks the pain im having is still due to the multi PE in lower lobe
when i got back my INR test back low again 1.50 working towards 2-3 was nearly there :} so they have put up warfarin
hoping to speak to wg consult wed or thurs as not sure if i need to do anything different
the cough i have is driving me mad let alone everyone else butb the keep saying my chest sounds clear !
never mind i got breast scan to look forward to on thurs think i would be best taking up residence at hospital as i spend more time there than at home some weeks !!
never mind roll on tomorrow :) DEEx

[Sangye]

Dee, how many weeks have you been below the 2-3 INR range? Also, when did you first get the PE's?

[DEE]

hi Sangye
below the last two weeks having test again in a week and i had the results of first PE on the 20th April
need to sort out as gp going on holiday for two weeks on friday which im suppose to inform wg consult about anyway
its just that i seem to be going around in circles at the moment
what with the above problem -change in medication - and the uncertainty of whats happening next
still waiting for rhmy consult appointment and urinology appointment feel like im back treading water
the one good thing is the new hearing aid i picked up on friday helps alot to hear all these doctors :) !!! got to smile before i scream ! DEEx

[ranpar01]

Thanks for the advice. I absolutely agree--if it had been my husband with the wegs we'd have been to a specialist ASAP. It's my stubborn dad though, so I have my work cut out for me!

I talked to my mom about the diet, and after some pressing she admitted that the dietician actually DID describe a non-extreme diet in which Coumadin is adjusted to accommodate balanced food intake. But what my mom heard was something along the lines of "spinach causes clots!" I gave her the info on here and I think she sees that was extreme.


For jenjenn711 - I'm in a similar situation with my Dad, who has had WG for many years. After his last big flare and hospitalization my parents decided to travel to the 'Big City' for help and it was very much worth the cost and effort. The Vasculitis Foundation is great about recommending specialists.
Contact info for the VF - Contact | Vasculitis Foundation (http://www.vasculitisfoundation.org/contact)
also a list of the top WG facilities, doctors at each, plus info on how to schedule - Best hospitals for Wegener's Granulomatosis (http://www.wegenersdisease.org/Wegeners_hospitals.html)

best of luck

[Sangye]

Dee, I'm concerned that you're still having so much chest pain. It's been over 2 months since you had PE's. That's a long time to continue having pain from lung clots. When is the last time they did a repeat CT of your lungs to see if the clots are dissolving? Did it show improvement?

I'm wondering if your cough is from ctx. When I was first on it in 2006, I developed a dry cough during the last couple months. We couldn't figure out the cause until it stopped abruptly when I stopped the ctx. Everything else must be ruled out, though.

[DEE]

hi sangye
its not so much across the chest pain but in the lower right lobe its always been there to some degree but with the cough it makes it more painfull
im starting to lower cxt down to 125mg until 14th july and 22.5mg preds but the consults need to decided what next as cxt not stopped all symptoms
they have not done a repeat ct scan i had first one done will i was in hospital im seeing doc that is treating PE next thurs
they only way of getting a repeat here is if she orders on and then you have to wait for an appointment it took five weeks to get u sound that i had today
im going to try and see or speak to gp tomorrow or wg consult at hospital on thursday
DEEx

[elephant]

Dee that is where my pain was ( gallbladder), the had to do a Hida scan and that is how the found out my gallbladder was sluggish. LIke Sangye stated need to get another CT to check on those blood clots. Hope things are better for you soon. Hang in there girl! Tripppppplllle chocolate coming your way!

[DEE]

Dee that is wear my pain was ( gallbladder), the had to do a Hida scan and that is how the found out my gallbladder was sluggish. LIke Sangye stated need to get another CT to check on those blood clots. Hope things are better for you soon. Hang in there girl! Tripppppplllle chocolate coming your way!

thanks everyone wil try to get some answers today DEEx

[Jack]

The pain I had with my PE was lower left side so if you still have pain I would be concerned. I don't think you should worry about waiting lists because they treat PE very seriously. My own scan was done on the day after admission and then they did not want me to go home untill they were sure that I was clear.

[DEE]

Been to see gp this morning he said i need to wait for report on scan next thurs has put lansporzole to help with stomach pain
he thinks cough could be still related to one of drugs but also could be PE related he said sometimes they take longer to dissolve
and recovery time different for each person
Jack i was also treated wonderfully when i first had PE scan on the second day also and then stayed in hospital four seven more days until warfarin
what i was saying to Sangye that we can not get a ct scan booked without going through a consultant
im seeing a consult next thurs for u sound results and PE check up
hoping to speak to wg consult tomorrow
Elephant my gp said to ask consult about gallbladder as u sound shows structure probs rg size and stones but not how it is functioning as you said
thank you all for caring DEEx