Weird Wegs Symptoms

[Sangye]

I thought this thread might be useful to all of us, especially newly diagnosed. Wegs can create some bizarre symptoms that don't appear in any textbook. Even our Wegs docs may not recognize many as indicators of active Wegs. Let's share our weirdest symptoms.

One of my 100% accurate indicators of highly active Wegs is feeling wide awake all night and overall squirmy. I'll be sleepy at bedtime, but it's like my body won't shut off and sleep. I can sometimes get to a deep level of relaxation, but it doesn't turn into sleep. This was one of the first symptoms I had, long before dx.

The squirminess is not "restless leg syndrome." It's like my entire body has to keep squirming or flipping side to side. I'll lay on one side and can't even count to 5 before I have to flip to the other side. It doesn't make me want to get up and move around, though. I'm usually really wiped out and crave sleep. It doesn't respond to magnesium--even high doses. When the squirmy-wormies start, I know the Wegs is becoming highly active.

I can tell when the treatment is working when I can sleep through the night and don't feel squirmy.

[elephant]

Sangye, I had insomia for years and I wonder how does that affect WG? Bio? Inflammation in the sleeping cortex :) ??

[Sangye]

I never had insomnia until Wegs started. I always slept very soundly and woke refreshed at dawn. So when the insomnia began, I knew something was going on.

In my case the Wegs preceded the insomnia. If insomnia comes first, it can wreak havoc on the body.

[pberggren1]

I sometimes have insomnia but not very often. I don't think it is always with active Wegs with me. Once I get to sleep i usually sleep quite well.

[gwenllian111]

Hmmm. The weirdest symptom/prob i've had WG related in having an inflammed vagus nerve! Being unable to swollow, and my bp and pulse going dangerously low! Very strange. Nothing suprises me anymore with WG. If i don't feel well, whatever the symptoms, I see my rheumy. I've never heard of vagus nerve being associated with WG, but I may be wrong. Apparently, some granuloma started to grow somewhere in my neck, pressing on the Vagus nerve apparently. Interesting stuff! lol.

Hope you're all well xx

[Sangye]

They should publish a case study of that, Gwen. It's very interesting!

Another very weird symptom I have that is a 100% indicator of active Wegs (and that started very early on): Along the right side of my tongue I get a small area that is very painful. It's a little deep in the tongue, too. Feels like a deep, bad canker sore but other than some redness, it looks normal. That isn't the weird part, though. It actually affects the way my tongue works, like a neurological problem. I might be talking and suddenly my tongue will sort of spasm and torque to the side-- as if to touch my back teeth. My whole mouth loses coordination for a moment and I bite down on my entire tongue. It all happens very fast. When the Wegs is highly active, this happens several times a day.

When it first began--months before I was dx'ed-- I thought it was cranial nerve inflammation. (The cranial nerves are in the brainstem and control various areas of the head and beyond; one is solely in control of tongue function) I still think that might be the case. I love neurology and entertain myself by contemplating hypotheses about the mechanism.

I've never mentioned this symptom to my Wegs doc. I don't think I could bear the laughter.

[JanW]

I think my weird symptom was foot pain that never went away (and eventually turned into the ankle injury/stress reaction that has me limping around to this day). I woke up one morning with a sharp pain in my big toe that was just annoying and within a week it was all over foot pain. I can feel everything on every surface I walk on which is not a comfortable feeling let me tell you. I am unable to walk barefoot anymore, and it literally happened overnight.

[malin]

My two weirdest symptomes occured in the beginning of my treatment and I have never experienced them again since. :/

The first one was acute rheumatic pains in both my kneecaps, I was absolutely fine one minute, the next I was crying my eyes out from the horrible pain and I couldn't walk, sit or do anything, my knees were hurting soooo bad. It lasted for about a day, then I woke up the next morning and my knees were fine. No sign/trace of anything and no pain what so ever.

The other one, I woke up one morning and couldn't open one of my eyes (can't remember if it was left or right), it was swollen and had puss pouring out of it. So seemed like an eye infection right? The next morning, I woke up and my eye is right back to normal, no sign of anything!

[MCC]

I can't remember exactly how they put it, but I had an unusual display of Wegener's in my kidney which the doctors had never seen before. It had them completely perplexed- at one point they thought I may have cancer as it showed as a lump about 6cm x 4cm on a CT scan. They even talked seriously about taking my kidney out for some time....was 'fortunately' diagnosed so this didn't happen.

[MCC]

Oh and whilst I was unwell pre diagnosis I couldn't bear even a drop of alcohol! If I had a mouthful of wine I would have a terrible headache.

[Sangye]

I had another weird symptom pre-dx. The tips of my toes started getting red, hot and very itchy. But if I scratched them, it felt like there was chopped glass under the skin. Every so often if the Wegs is really getting active again, it starts to come back in 1 or 2 toes. It correlates with being too hot and/or eating too many heating foods--ie, generally increasing the fire. If I cool things down again it goes away.

[elephant]

When I use to sleep I would be really hot. My husband said "I was an oven."

[coffeelover]

I too have had trouble with sleep and restlessness since being diagnosed with WEGS. I assumed it was the lovely prednisone.

Lately, I also get foot pain....I think they call it planter facitis. (spelling???) Realy hating it.
I will see my rheumy in less than a month and will discuss this new "symptom" with her. I know she has threatened that if the mexotrexate does not appear to be doing the job...she will put me on the Cytoxin. Ughhh! I dont want that..so I am trying to be so good
Not my choice I guess

[JanW]

I'm counting how many of us are presenting with foot pain. I feel your pain, CL...I'm now walking with a cane and started PT, just in case it turns out to be mechanical. Am only the second week of mtx -- how's your windpipe holding up?

[Sangye]

I had severe joint pain in every joint before Wegs was dx'ed. Once I started treatment, it was "only" after moving around. It has kept me from exercising at all for several years. Now that I'm tapering pred, I'm getting all kinds of weird joint pain. Comes and goes-sometimes lasts only a few seconds. I'm keeping an eye on it.

Lisa, I hate to say it, but your foot pain is more likely Wegs than PF since it began during a Wegs flare. PF is an overuse injury-- have you been walking or running a lot? I hope you don't need to switch to a big gun drug. Why isn't s/he considering rtx instead of ctx?

[AndrewMcC]

I have severe pains in my calves after walking about 20m, it is equivalent to having very bad cramps in both legs, fortunately it does not intensify so once you get used to/control the pain levels mobility is acheivable, i also get wobbly painful knees if i walk too far (10minutes).

What a bunch we all are, if we were horses!!!!!!!!

[elephant]

Hi Andrew, How long have you had pain in your calves. Are they tight and swollen? Red? When I ever hear a description like you described about your calves...I think of blood clots in the leg. It doesn't mean you have them. Have you ever had a ultrasound on your legs to rule out blood clots in your leg. I had a blood clot in my left leg and that is exactly how my calf felt. Sorry, I just had to say that my alarm bells went off. Thanks for sharing.

[Sangye]

Yes, my alarms went off, too. Have you had this checked out Andrew? Aside from clots, the other likely diagnosis is claudication (basically arteriosclerosis of the leg arteries). Stenosis (narrowing) of the spinal canal in the low back can cause it, too. I'd get these checked out in the order listed.

[AndrewMcC]

I've had the pain since leaving hospital almost 1 year now, its my weggie birthday soon woohoo, I think it may be a mixture of a weggie symptom and a pred one, no one seems able to give an answere, although I'm veering away from the pred as the pain is not subsideing in conjuction with the reduced dosage.

No redness or swelling, the only physical signs are an increase in my crp results.

Checked out claudication(new one for me) seems to fit the symtoms, will persist in getting it tested.

More tests more drugs mmmmmm lovely.

[Col 23]

Sore feet, arches, toes, aching ankles, swollen knees and ankles, tightness in the calves, cramping in toes, weird pains in all different areas of the calves but not always in the same area
inablility to walk long distances. Normal symptoms for me.
Col 23

[AndrewMcC]

Have you found any remedies? Sorry to hear of your afflictions but glad of the solidarity. Its amazing how that common symptoms become less scary.

[Cindy M]

I agree with Col 23. I have alot of the same symptoms, my left foot and ankle swell instantly as soon as the weather turns warmer. Never had this problem before. I also get alot of leg and feet cramps. Just rolling over in bed or walking up the stairs will set off a muscle cramp. I am getting worried though because I still cannot walk long distances, or any sort of distance without feeling weak, back pain, just totally exhausted. I also tend to feel hot, almost like night sweats, but not.

[elephant]

How is your calcium, potassium and magnesium level? If those are off you can have muscle cramping. I also got muscle cramps when I was on high dose of Prednisone.

[Cindy M]

I am taking calcium vitamins but I am not sure about my potassium and magnesium levels. I also take Vitamin D. I went for a bone density test today and will get the results back in about 1 week. Also I have started taking Etidrocal over 1 week ago because of the high dose and long term that I have been on preds.

[jola57]

Cindy M, eat a banana a day and say goodby to cramps (well at least we can wish), it does seem to work for me. It has been 3 and 1/2 years and I still feel like you just described. I don't think the tiredness and achiness will ever go away. I simply have gotten used to not being able to take long walks and doing everything in modaration.

[Sangye]

Cindy, you and I have such similar symptoms. You should take a calcium supplement that has magnesium in it, in the proper ratio. (You might need more magnesium because of the pred, but start there and see) As for the utter exhaustion, that's a combo of active Wegs and the deep depletion caused by pred. The best advice I can give you is not to try and push through it. That only digs a deeper hole.

Focus on motion, not exertion at this point. I posted suggestions about using a pool and a pedal exerciser. Both will accomplish that without weakening you more.

[Col 23]

Sangye, I was wondering how you were going as you mentioned in a earlier thread your had just been to JHU. Love the focus on the motion not exertion, I pay for it everytime I overdo it.
Col 23

[Sangye]

I'm doing okay. No signs of major Wegs activity. I'm tapering the pred as slowly as is humanly possible-- by 0.25 mg every few days. I've been at 3 mg for longer than I thought. I was getting a lot of worrisome symptoms and decided to hang out at each level until they eased up. Basically I have so much damage from Wegs directly and collateral damage, that it won't be until I'm totally off pred and have the Wegs totally under control (which it's never been) before I can tell what I'm left with.

[elephant]

I'm right there with you Sangye, wondering the same thing. Another wait and see! Hoping no Wegs activity for all!!!!!!!!! Did you hear that WG! Oh, yea ...i'm suppose tip toe ever so gently..shhhhhh

[Col 23]

Its great that your tapering the dreaded pred. fingers crossed for you.
Col 23

[sharon]

Sangye, thanks for posting the weird wegs stuff, SO glad to know that i am not the only one. My dr is good, but like you said this stuff is not written down anywhere, so often is at a loss to explain things. have had similiar problems with my feet and legs, and being dead tired and unable to sleep, when it gets too much i take muscle relaxants at bedtime.
thanks once again. We are not going round the twist after all...

[elephant]

Sharon what medicines are you on to keep WG in remission? Did you take the cytoxan and prednisone at first?

[sharon]

Hi elephant
My docs don't talk remission, i ask they, say i am not there yet, i was put on high doses of pred.(125mg then 100mg for at least 6mths, then tapered down v slowly), cyclophosphamide, ds bactrim & symbicort. I currently am on bactrim, 5mg pred & cellcept. They have tried to take me of the pred. i generally don't do as well, my energy levels bottom right out,i put on weight as i tend to eat to try and get energy, and yes, it is always the high sugar stuff. Choc & coffee are my best friends.

[elephant]

Wow sharon that was alot of prednisone, so glad you are down to 5 mg. Being on 100 mg for at least 6 months would cause you to gain alot of weight. So give yourself some credit...you made it! You survived, when I was on 60 mg ...I felt like I was going to go crazy! Do you take Bactrim daily? How many mg of Cellcept are you on, I take 2000 mg. I am not there yet either....in regards to remission. I hope to reach it soon.
Chocolate and coffee are my favorite. I love Starbucks!

[Sangye]

Holy smokes, Sharon. I can't believe they kept you on such high doses of pred for that long. That means they were using pred as the main engine to control Wegs and that is not what the Wegs specialists do. The immunosuppressant is the main engine.

When you've tried to taper off the 5 mg pred in the past, how did you do it?

[sharon]

Hi elephant, With the high doses of pred, the weight was not the issue, i was v difficult to live with, kind of ocd with things like cleaning at strange hours, prone to picking fights for the fun of it, and sleeping at the drop of a hat. I no longer take bactrim everyday, just twice a week now. I take 2500mg of the cellcept. Unfortunately our starbucks closed down, gloria jeans is ok, but my fav was in a little coffee shop up the coast at Moolooaba, it was to die for. But around home the coffee club is pretty good. Do you have Toblerone choc? it is great with coffee. When i finally reach that holy grai of remissionl, i am having the party to end all parties believe me!

[sharon]

Tell me about it! When i was not responding to treatment quick enough, I got referred to my lung specialist who has had a bit of experience with wegs, he got my pred down to reasonable and pu tme onto the cellcept. I tapered down pretty slowly, i think around 1mg a month from memory, every time i get down past 5mg, my body does not like it. the 5mg pred seems to keep my bloods pretty stable and i can keep on top of things namely weight & diet, when i drop downi put on weight quicklyas i tend to eat all the wrong things to get energy, my energy really bottoms out. I also changed to a really good GP who has some good contacts and does her research. I really appreciate when a dr admits they don't know something but are willing to research & ask higher up. I have read some of your other posts, you are pretty sensitive to the stuff. I am not even 5ft, weigh about 65kg, but my body tends to tollerate things pretty well, a bit stubborn like its owner i think. the only thing that knocked me around was when i had this really weird bacterial infection that of course is rare and hard to treat in my foot of all places, those antibiotics made me really sick, nausea and dizziness. That was a treat, i was on them for 4mths to clear the stupid thing. How did the taper you down?

[sharon]

Sorry to bother you again, i was having my tea and got thinking about in the begining of my treatment, when they put me on the cyclophosphamide, i was of the understanding it acted like an immunosuppressant & worked in combination with the pred, i had many lesions, nodules and cavities in both lungs + some asthma thrown in for good measure, in your opinion would that have influenced the prescribed treatment. What was the first course of action they took with you? How common is the use of cyclo that you have heard?

thanks again,

[elephant]

Sharon, I never heard of the Toberone chocolate. I should look for it. We use to have a Gloria Jean coffee shop too. Are you still on Cellcept?

[Sangye]

Elephant-- you will love Toblerone chocolate! Oh, it's very very good. :D

Sharon yes, with those types of lung issues you'd have to be on ctx (cyclophosphamide/ cytoxan) or rtx. What dose were you on? (The typical is about 150 mg but depends on weight) I've never seen anyone on ctx who was also kept at 100mg pred for so long.

I'm tapering 1/4 mg a week. Even so, I had to stay at 3 mg for 11 days until things settled down. I drop by 1/4 mg and then stay there until I feel stable. So many people have a hard time getting off the last 5 mg of pred. I wonder if they went this slowly if more people could do it.

[elephant]

Sangye, are cutting the 1 mg of prednisone into four. That is an ordeal, trying to cut a tiny little white pill in fours...I mean....it's like cutting a piece of dust!

[sharon]

Elephant, still on cellcept (2.5gm a day). I can just picture sangye trying to cut those pred tablets, he better do it at home, otherwise he would look like he was cutting something else entirely! LOL

[sharon]

Sangye, sorry to laugh at you, but the vision of you trying to cut those pred tablets in 1/4's too much, did you feel like you were doing someting illicit? We rattle enough as it is, without having to cut our drugs. I cant remember what dose of cyclo i was on, but your ratio seems familiar.

I wonder if you are on to something with your method of tapering down, & hope that elephant finds some toblerone choc, he does not know what he is missing!

[Sangye]

Yes, I am cutting 1 mg pred pills into fours. They're scored, so you can break them in half easily. But you need a pill cutter to cut the halves in half. It comes out pretty good, actually!

I was never into illicit drugs-- pharmaceutical stuff is bad enough. :(

[jola57]

Sangye, steroids are illicit, LOL, we just get them on prescription. Ha ha ha. I am trying to go down from 7 to 6 but find it very difficult. I am getting light headed and achey all over, even feverish. So I took 7mg today, I was on 6 for couple of days after alternating for over a month. I will halve my 1mg into half like you and then quarter and hope like crazy it will work. I am so close to weaning myself off that I can taste it. And it tastes even better than my Mom's cabbge rolls.

[Sangye]

The reason why I hung out at 3 mg for so long (11 days as opposed to 5 or 6) was because I had such bad pain. It wasn't Wegs pain, though. But MAJOR jabs of pain in joints and muscles that would take my breath away. As that eased up, all my joints felt like they were 90 years old-- extremely arthritic and painful. Still not Wegs pain. I was scared. My nose also got more painful (the bizarre cartilage pain I get). But it all went away so I dropped to 2.75 mg yesterday.

I'm not alternating doses. That didn't work well for me, even alternating by 0.25 mg. It works great for many people, though.

[jola57]

Well that could be that your body wants its prednisone. It doesn't want to produce its own when it was supplied so generously for so long. LOL You now just have to convince it to start producing again.

[sharon]

Sanye, i have never touched the iliicit stuff either, but i find it funny we all know so much about them now! I would never have guessed in a million years that i would become so fluent in drug side effects & combinations, & just how much can this body really take! LOL I thought this train of thought was only for addicts ... oh no . . . say it isn't so .. am i a pred addict? ...!

[onatreetop]

A little late as usual but my symtoms strated in my hands . The docs thought it was carpul tunnel for 5 years until I went to get evaluated for arth. then they found the palmer arch in my hands was blocked by the grans. Then tiny 3mm nodules (7) in my right lung. That triggered the alarms and off to wiggieland I went.

I didnt tear the ligament in my foot until after 7monthes ? of the treatment. it hurts if I dont wear shoes. nearly impossible to walk without them. The three end toes havent come back yet either the nerve is still damaged. The doc s said a year or more til they come back if they do.

[AndrewMcC]

I have been away for a few days and just catching up, The information on reducing the preds is useful, I've been on 10mg for a few months now and coming down slowly, seem to be stable at this an slowly losing weight (oh happy days) but better to reduce, going down by 1mg every 2 months.

Sharon, I think maloolaba is one of the best places i have ever been to, in fact before weggies hit it was where i was going to get married, so enjoy another coffee there for me, flat white and
a slice of chocolate fudge cake.

[AndrewMcC]

I had my consultant check out claudication (thanks for the heads up, she was most impressed) I'm fine and the leg pains remain a mystery.

[sharon]

Hi AndrewMcC, my husband & i love it too, God's own country so to speak, We found this little coffee shop off the main esplanade, behind the mantra hotel i think. A young guy had just taken it over, i would consider moving there just for the coffee, but his food was out of this world as well. I would definetly have another coffee there & yes i will make the sacrifice, for another piece of his cake on your behalf - no calorie to high in his shop let me tell you, in fact, calories do not even come into the equation!!

[AndrewMcC]

I'm hoping to get down there next year I'll be sure to check it out. We could arrange a weggies convention lol

[sharon]

i know we should, its tough location, but i am willing to rough it, we will have to tell nat she is around this part of the world too, i'm sure she would be willing to make the sacrifice for our cause - good coffee!!!

[Natalie]

For sure I would love to Sacrifice For coffee on the sunny coast with yous :D Last time I was up there I was 20 travelled up with a few girlfriends to watch the Screaming Jets Rock The old Moloolaba Holel . My Fav Band By the way :)
How are you today Sharon ? and Hello Andrew Im new to the Forum but not new to the disease . Another QLD 'er . hope you are ok and look farward to catching up with you guys in the future.

[sharon]

I too am looking forward to catching up with my fellow queenslanders over coffee. I am off to a convention soon @ the sunny coast, i will drop back in and let you know how i go. Nat I am pretty tired tonight, i took my girls shopping @ indooroopilly today, and we shopped till we dropped, but we had a really good time together.

[Natalie]

Glad you had a great day shopping Sharon :) confession had a nana nap today .. wow I must of needed it ..

[elephant]

I take a nap almost every day, it makes me feel better. So Nap, Nap away!

[DEE]

just got up two hour nap:) DEEx ready for more food !!!!!

[elephant]

That sounds good to me. Need to replenish! :)

[DEE]

replenished !! one weird thing that springs to mind is that since been on preds i seem to be able to eat things i dont normally like eg pizza :) and crisps that the flavour i hate !! DEE x

[MCC]

I thought of another 'weird' symptom (at least i don't remember reading anywhere that it's a common symtom of wegs)- I had tachycardia, where my heart was constantly beating too fast.

[Lightwarrior]

I thought of another 'weird' symptom (at least i don't remember reading anywhere that it's a common symtom of wegs)- I had tachycardia, where my heart was constantly beating too fast.


That seems to be one of my problems, my docs (remember I have a frustrating, arrogant, ignorant rheumy) doesn't seem to think it is related to Wegs

[elephant]

Mandy, I too had tachycardia, went to the emergency multiple times....thought I was having a heart attack at age 30. It was really scary, had to wear a heart halter monitor 24/7. Of course it didn't happen ( tachycardia)at that time.

[Sangye]

I've had that too. I don't think it's related to Wegs. (I'm sorry to agree with your lousy rheumy Lightwarrior!) There are a lot of causes of tachycardia but for Weggies the most likely are: pred, anemia, magnesium deficiency and vitamin B deficiency. Both magnesium and vitamin B regulate heart activity, and both are depleted by pred. When I've had tachycardia it's always been due to one or more of these.

[Lightwarrior]

Probably pred or anemia, my mag level is fine and I'm on B12 injections. I think it may be due to the vasculitis (my theory) all three times that I have received fluid boluses my heart rate went down for a hour or so, I wasn't septic and shouldn't have been hypovolemic so I thought perhaps a baroreceptor was being fooled into thinking I was secondary to the inflamation from the vasculitis??? My pulmonologist and cardiologist said maybe.

[Sangye]

Blood tests for nutrients only show clinical deficiencies. A sub-clinical deficiency of magnesium is enough to cause a heart attack. Also, you need all the B vitamins. B12 injections will cause imbalances in the other B vitamins. Do you have B12 anemia?

I don't know about the baroreceptor theory. It seems if that region of your blood vessels was inflamed it would be chronically inflamed. I like to try to solve puzzles like that, though so I'll be cranking my brain on it. If I can remember. :D

[sharon]

Nat
I have not been home long & i wish i had a nana nap today!!! Did you let your head go and have another one today?

[MCC]

I've had that too. I don't think it's related to Wegs. (I'm sorry to agree with your lousy rheumy Lightwarrior!) There are a lot of causes of tachycardia but for Weggies the most likely are: pred, anemia, magnesium deficiency and vitamin B deficiency. Both magnesium and vitamin B regulate heart activity, and both are depleted by pred. When I've had tachycardia it's always been due to one or more of these.

That's interesting. I kind of assumed it wasn't happening now since I'm on all the medication, but it's never been measured again (I never noticed it myself, it was just picked up at the doctors and hospital several times pre diagnosis).

Maybe it was anemia as tests showed I was low on iron...the doctor said it was probably because of the Wegener's. Since then my iron levels seem ok, and I take a B12 supplement. I don't know what my magnesium levels are like.

[Sangye]

Why are you taking a B12 supplement?

[MCC]

I am vegan.