What Prednisone does to your body, or atleast what it did to mine *disturbing pics!*

[carriej22]

Not really sure why I'm posting this. I guess I'm angry.

While my doctor informed me of weight gain and all the other side effects from pred, he did not mention the one that affects me the most. The striae. I understand not everyone has them, but prednisone basically gave me steroid induced cushings disease. This disease is not pretty. My body will never go to back to the way it was. I understand Im alive and should be thankful, but this drug has destroyed my confidence and my ability to enjoy life at the moment. Someday I will probably get over it... But it's really affecting my mental state right now.

So before diagnosis... I was never skinny girl. But I was relatively trim with nothing jiggling around, proportionate and confident in my skin.

(sorry for the crappy pic, its one of the only "full body" shots I have that does not include dresses or other body shifting/changing material)

http://img.photobucket.com/albums/v709/zygirl22/wtf/carriefirstday028.jpg

Here is a picture of me the day before my wedding. Panic was ensuing because I thought my face was getting fat at this point. HA

http://img.photobucket.com/albums/v709/zygirl22/wtf/376856_10151107282550804_1510017715_n.jpg

My face the beginning of July. Approx 1 month after Prednisone started.

http://img.photobucket.com/albums/v709/zygirl22/wtf/photo2.jpg

It's worse now, than that. But it's coming down.. I think

Anyway... I gained some serious weight in what.. 6 months? About 30lbs.. All belly.. Let me show you.

Beautiful isnt it... See those lovely marks. Notice how my legs are pretty much the same size. You have no idea how many people ask me when I am due for a baby. It's depressing.

http://img.photobucket.com/albums/v709/zygirl22/wtf/photo19.jpg

If I didn't know better I'd think something was growing in there.
http://img.photobucket.com/albums/v709/zygirl22/wtf/photo21.jpg

Even places that haven't grown have the marks.
http://img.photobucket.com/albums/v709/zygirl22/wtf/photo20.jpg

I have these marks from my ankles to my neck. They're even on the back of my neck, legs, everywhere. Only place none have arrived is my butt. My butt and legs have not put on any weight.. But this serious nastygram bag of lard stomach is no walk in the park. My doctor is all like "i've never seen someone have quite a time with it before..."

And I have lost 10lbs of it at this point.. So it was worse than this. At first I admit, I had quite the appetite. I had lost a lot of weight (I basically starved for 4-5 months prior to wegs. I just couldnt eat) so at first it was nice to eat again. Once I seen the scale go up 5lbs I said, whooaa mama. Immediately cut back to what I would consider normal portions. What I would normally eat when I was healthy. It was hard, I wanted to eat the fridge, table.. etc.. lol. Then, the weight kept coming. I lived off cucumbers from papas garden, iced tea and frozen grapes. Weight still kept coming. Now that I am lowering on pred some of it has come off.. But man, I don't care who ya are Jack... That skin ain't going back where it was.

[pberggren1]

Yikes, I didn't know pred could cause Cushings. What is Cushings exactly?

[Debbie C]

Carrie ,I am so sorry that pred.did that to you.How high of a dose were you on and for how long ? I never heard of steroid induced cushings until now,then I googled it. You would think that drs. would have lowered it sooner. Have you seen a dermatoligist to see if there is something they can do for the marks. I know I have like bumps on the back off my arms and he just suggested putting cream on it but maybe there's a laser treatment or something that can help ???? As far as the weight goes U can lose that in time, you just have to really get a seriuos workout routine down and stick to it..even if it is just a few days a week...congrats on losing the 10lbs.

[carriej22]

I was on 100mg for 1 month. Then down to 60 and tapered 10 a week til 20. Then got sick again and ramped back up to 60 and am now down to 10mg. Sucks.

Most of this happened in the first three months. It's horrible. There isn't really any treatment for the marks, that I can afford anyway.

Prednisone can cause like a "temporary" cushings disease that will go away when the pred is stopped. I also grew hair on my face. Luckily, I'm an esthetician so I took care of that and it doesn't seem to be coming back anymore so I'm assuming my body is calming down. It just sucks.

My husband keeps telling me to tell people I was attacked by lions.

Hilarious isn't he!

[vdub]

That is a very discouraging side effect. I had an unknown disease back in 1960 (probably WG) and I was put on a new wonder drug called cortisone. I was only 10 years old so doubling my weight was not to difficult. I gained so much that I was eventually put in a wheel chair -- partly because of the weight gain and partly because of the lethargy and fatigue. I was sick for two years and then came out of it or it went into remission. Anyway, I still have the stretch marks from that time period 50 years ago. Eventually, I lost the weight.

Best of luck to you... I know this is a terrible time to go through. I hope your husband is staying supportive -- that is so important.

[Debbie C]

Carrie.at least yr hubby has a sense of humer about it...I likes the lion comment.Hey he still loves you thru all this so thats all that counts. Things will get better

[annekat]

Oh, Carrie.... Thank you for having the courage to post those pics. Now we know what you are talking about...... I wish your docs hadn't thought it necessary to put you on 100mg./day of pred at any point. That is really a lot, and unusual, from what I've read on here.

I do think it likely the excess weight will come off and you will feel better. I wonder if there are any docs specializing in Cushing's syndrome who could give you more answers about dealing with this. And maybe there are some Cushing's support groups in your area or online, where you could talk to others who are going through the same thing. It could be therapeutic.

As for the moonface, you are a very attractive woman with a pretty face, no matter what. If it is coming down since the third picture, that is great!

Your husband sounds funny and awesome, with a great attitude. I don't think you could have picked a better one!

[malin]

I know how you feel :( This summer I was put back on pred n last time I had an appointment at Addenbrookes the doc said he thinks I've got pred induced cushings as well. Got very bad moon face, new stretch marks, weight gain no matter what etc. I mean I wasn't ever not big :p but since August I have gained (so far) about 25 kg! plus got the hairs growing on my face and spots all over my face/chest/back. Am at 30 mg pred at the moment, was supposed to reduce with 10 mg a month until I was down to 10 mg but that stopped short when I caught a chest infection so am still stuck on 30 mg now.

[JeanMarie]

Carrie, I'm looking at your wedding picture you were a beautiful bride & you still are!!!! Pred- the drug we love to hate but it works and that's all there is too it.

[carriej22]

Thanks guys - it's nice to see the support. I was a bit worried about what kind of response I was going to get back. LOL

My husband luckily, is a saint. Sometimes I want to kill him - but the marks don't matter to him and neither does the weight. He just wants me better. We have been together for 8 years now, and we've been through a lot together. He's happy to have me home and alive. I remember when I was in the hospital for a week the end of August, I came home and was harassing him from the bedroom since I was on oxygen. He said he missed my snarky comments.. lol. I doubt any other man (or woman for that matter) could live with me! Hahahaha

From what I understand, this is why my doctor is getting me off pred so fast. It seems as though most of you have been on for several years. I'm weaning down to 9mg and I've only been on since June, but as you can see.. This drug is destroying my body and I guess I just don't tolerate it well. He is hoping to get me off pred completely, and then just Imuran. Then hopefully off Imuran too... Would be nice... Sigh to be a regular human again!

It's just hard for me - I was never one to dress provocatively, but I am only 23. I don't feel comfortable in a lot of my clothes anymore, as I have the striae right down to my elbows. Looks like I'll be buying a lot of 3/4 length sleeved shirts. They are hot purple and stand out on my skin like no ones business. I can see people staring, probably thinking "thats a weird place for that many stretch marks"... And I agree since my arms haven't gotten that much bigger if at all, yet.. Still covered.

I know the weight will come off - It's already starting to come down some. My only issue is that I know my stomach is going to hang... I'm really not into having a tummy tuck (even though to make me feel better, my doctor said if I lost the weight it would be covered by medicare) as it just seems like a high risk to me, as well as the possibility of going back on pred in the future and blowing up again.

[drz]

Jack often posted about how pred and other meds had ruined his body and everyone seems to agree that the side effects can be horrible, but the alternative before the discovery and use of these horrible wonder meds that have kept us alive wasn't real great either. Remembering this doesn't make the side effects go away but it helps me deal with things to remember the alternative. Sorry for the distress it is causing and hope things get better. Hang tough and enjoy the support you get to help deal with this and other not so nice things too.

[HopeinTN]

Girl, I'm so sorry you have to not onlt go thru this dreadful disease but now this. Maybe they will disappear as fast as they came about. I'll be thinking of you and wishing you well. I too struggle with the weight gain and all the issues it has now caused, but liek many have said, it's better than the alternative. Tell that to my big booty.

Hang in there and I'm so proud of you for sharing, that had to be tough. But really, no one would have known how bad this was without seeing the pics.

You really are a beautiful lady. Take care!

[chrisTIn@]

My daughter ( she's your age) had some stretchmarks on her hips and tummy, but since she lost weight, the stretchmarks eventually got less visible (no so red).
Nowadays they can hardly be seen.

It's lovely that you have such a loving and humorous husband!
Still I can understand that this damage of your skin and connective tissue is at this time hard to accept for you.

I remember that during my pregnancy I was also very afraid to get stretchmarks, and that I tried to prevent that (from what I read in books and magazines about that matter, there was no internet at that time) by massaging my skin (rolling skin and connective tissue between my fingers to stimulate the bloodcirculation) and using creamy bodymilk to keep the skin supple. In my case, that treatment worked. I never got any stretchmarks during my pregnancy.
I know that damage already done (as in your case and the case of my daughter, in a period that she grew quickley) can be treated with specialized lotions. That kind of lotion and cream is available in Europe, and I 'm sure it will also be in the USA. You as a beauty-specialist will surely be able to find such creams, would'nt you? Good luck with that. My daughter sure benefitted from those creams. But it takes some time to see result.
About the tummy tuck: I totally agree with you that such an operation would be too risky. When you loose weight and you take moderate exersize that you slowly increase, you probably will get result. When your muscles and your abdominal wall get stronger through abdominal exercise (I repeat: start slowly, let your body get used to it, especially since you're still on pred) your tummy will get flatter over time, and your skin will be elastic enough -since you're still very young- to get into shape again.

Maybe you told it earlier, but is your doctor a real vasculitis specialist? With enough experience?
Can you get a second opinion about your treatment and the side effects in a vasculitis centre otherwise?

[carriej22]

Yes, my husband is a godsend. He never fussed, not even when I had to have him help me was my hair, etc when I was unable to do it.

I have tried several different creams. Both professional brands that I purchased through different wholesalers, as well as prescription creams. Unfortunately, as a Esthetician the main thing I preach is prevention. Once you get a stretch mark, the dermis has ripped/torn and even though over time the appearance will improve it's almost like a sort of scar. The creams did not do much at all. I began the creams before it was this bad, but they kept coming.. They were uncontrollable. I would wake up with many new ones, it was very, very frustrating.

From what I was told, prednisone can restrict the production of collagen and elastin fibers which is why I have so many. Even areas that have not gotten any larger (for example, I am still wearing all my same pants, yet my ankles (weird???) are covered) have these marks. My skin is like tissue paper right now. It's extremely soft and loose feeling. Very weird. It also sticks to itself. For example, when I'm in the shower I have to be very careful not to rip my skin. If I put my arms at my side the soft skin of my arm will literally stick to my underarm. It's quite painful sometimes, and my skin is constantly ripping and weeping.

I have a few doctors, but my main doctor is a rheumetologist. He treats quite a few other wegener's patients (well, many for the rarity of the disease) and I believe he is only 1 of 2 in the province that deal with it. I also didn't really get to pick my doctor. We need to be referred and he is who my family doctor suggested and referred me to.

I do not believe there are any vasculitis centers even in Atlantic Canada, however if another Canadian (seems to not be too many of us) could chime in on maybe where there IS one I would appreciate it,

[drz]

Prednisone does thin your skin. I remember when I was on higher dosages, and got a pedicure I was told they had to be real careful not to tear my skin because it was so thin. When you get to lower dosages this and other pred symptoms greatly improve but don't go away entirely.

[annekat]

Prednisone does thin your skin. I remember when I was on higher dosages, and got a pedicure I was told they had to be real careful not to tear my skin because it was so thin. When you get to lower dosages this and other pred symptoms greatly improve but don't go away entirely. That is creepy. My skin seems thin to begin with. I wonder if that's why I got a hole in my skin in the crease between the corner of my eye and my nose. It first turned purplish and then two small holes appeared, each about the size of the head of a pin. Then they enlarged and merged to one hole about the size of an apple seed. It's mostly folded together so you can't see it, but it's kind of like having a third nostril. Gross, I know! Hope to get it fixed some day. I haven't had any striae, though, from stretching of skin. I see my hole as tissue death; this was not long after dx and the whole area around my eyes and cheeks was swollen and red. The docs weren't paying a lot of attention to it because my lungs were in such bad shape. So my doc increased my dose of CTX until the eye area got better. I was on the higher doses of pred at the time, too.

[Debbie C]

i was wondering if anyone is just taking pred. I'm still on 5 mg. and my stomach is so messed up ...it feels like I have an ulcer and recently I have been getting really bad stomach graps. My dr. took x-rays of my stomach the other day but he is off today so don't know the results.I think I may have him schedule me an upper endoscopy. my reumy prescribed me bactrim to take but I was given the generic which again another drug I can't take,it made my lab work go crazy so my kidney dr. told me to stop. Also is anyone getting the flu shot ???

[Pete]

Hi Debra,

I'm down to 5 mg/day of pred, but still taking bactrim and mtx (plus other meds for bp and asthma). I take my pred with food and have had no gastric problems. My pulmonologist thought I might have "silent GERD". I had the upper pH probe test done last spring and that showed no anomaly, so I decided against the endoscopy. No other symptoms noted.

I had a flu shot about a month ago. I've had no ill effects from it. The Columbus health dept says that hospitalizations for flue are way up this year (45 cases this month vs 4 for the same time period last year) and are recommending that everyone get a flu shot as they think we're in for a rough year.

[annekat]

Thanks for the advice on the flu shot, Pete. I've never gotten one and my doc thinks I should. I know there's been input both pro and con on this forum. My tendency is not to want to get one. But it's good to hear that you did and suffered no ill effects.

[Dirty Don]

I had a flu shot this year. No ill effects either. But, it was NOT a live virus...NO live viruses, er, virii...huh!?

[annekat]

I had a flu shot this year. No ill effects either. But, it was NOT a live virus...NO live viruses, er, virii...huh!? I asked my doc if it was a live virus and he said no. So I don't know if that means some flu shots are live viruses but the ones they give in his office aren't? Is it something we need to ask?

[Sr.Roc]

i had the same thing happen to me when i frist went on pred. it been two year now and i am only on 5mg. i was told it would never go away but all the red strech mark are gone and my skin is adjusting with my weight. so there is hope. one thing i have learnd in the two and half years i have had WG that no one knows any thing even the docs because ever one with WG is dif

[Dirty Don]

I asked my doc if it was a live virus and he said no. So I don't know if that means some flu shots are live viruses but the ones they give in his office aren't? Is it something we need to ask?

YES! For example, my doc doesn't even keep the live virus in office. Only the 'dead' one I guess! I was told early on with WG that I could not, should not induce a 'live' virus into my system as the drugs were stifling my AI system, so I wouldn't be able to fight off the strength of the live virus. I don't recall asking the difference, making the assumption dead is better than live in this case...hmmmmmm...falls off chair thinking about it...

[annekat]

YES! For example, my doc doesn't even keep the live virus in office. Only the 'dead' one I guess! I was told early on with WG that I could not, should not induce a 'live' virus into my system as the drugs were stifling my AI system, so I wouldn't be able to fight off the strength of the live virus. I don't recall asking the difference, making the assumption dead is better than live in this case...hmmmmmm...falls off chair thinking about it... Thanks, Don..... I guess I knew enough to ask, since having read on here that live viruses were not good for shots for us. And the doc must have meant that the ones they use in his office are NOT live viruses. But he neglected to make sure I knew that if I got one somewhere else, it shouldn't be the live kind. What I didn't know for sure was that apparently, as you imply, flu shots come in both live and dead versions. (They were out of the vaccine that day, so he couldn't cajole me into getting one on the spot.)

[drz]

I think the live virus ones are used when people inhale the substance to gain protection against the flu. Some people really dislike needles but there may be other reasons the live one is used.

[carriej22]

All this talk about needles.

It's funny, because just last year I was getting my rabies shot. I first started getting it back in '06 when I was trying to get my DVM. Needless to say, that didn't work out so well for me. I still (well, not much as of late) volunteer at an animal shelter so I figured I might as well keep it up.

Anyway the first time I got my rabies (its 3 needles) I never noticed a thing. Mind you - I was like 17.

Last year when I had to get them re-done, man they knocked me on my butt. Each one got harder. You get one, then a week later you get another, then two weeks later you get the last one. I spent almost a whole week in bed after the last one. I thought it was because I was getting older... But I was still only 22. Wonder if this was a sign of what was to come?

[Dirty Don]

Wonder if this was a sign of what was to come?

I think many of us go thru this, I still do. After seeing so many docs, getting so many opinions, answering so many questions...it's only natural to start 'discovering' earlier suggestions of WG coming on. After numerous medical history discussions, between docs, wife, and myself, we all have pretty much come to the conclusion that I was at least showing some symptoms of WG around 2 years before last year's debacle! LOL!

[annekat]

Yeah, I was having some weird tinnitus, dizziness, and a strange full feeling in my ears about 10 years before the big bilateral ear infection that began my semi-official Wegs journey, and even THAT was 2.5 years before dx.

Just now, it occurred to me, I also had trigeminal neuralgia, a recurring, stabbing pain around my left eye, way back in the 1980's... it got bad enough that I needed dx and treatment, and was prescribed amitryptiline, which worked, though it made me a bit wonky. This went on for about 10 years and eventually went away. It was probably what they said, and not related to future Wegs, but you never know....

[Debbie C]

I took my mother who is 85 to the dr. the other day (we have the same pcp ) and he told her she should get the flu shot and I asked him if it was a live virus and he said yes. She doesn't want to get it since she never goes anywhere,and I'm afraid to. I had to go to the er yesterday with a bowel obstruction..that was fun !! The dr. there gave me a ct scan..he said being on pred makes your skin thin and it also makes your insides (organs and things ) thin out too so he wanted to make sure there were no perforations..luckly not...but it was not fun. Today I feel horrible,I swear I am getting an ulcer..having an upper gi scheduled.When I go to the CC in Jan I'm gonna see about getting weened of this horrible pred. I felt so much better when I didn't know I had wg and put on all this crap.

[Dirty Don]

As Al pointed out to me, and so many are aware of now, the 'cure' can be worse than the disease. Well, we don't have cures, but we do have drugs that can cause worse reactions than the disease for some people. Frankly, I prefer the drugs...the disease is taking me where I don't wanna be right now!!!! Hang in there Debra C.

[Debbie C]

Don..why do u say the disease is taking u where u don't want to be now....is everything O.K. with u ??

[Dirty Don]

Don..why do u say the disease is taking u where u don't want to be now....is everything O.K. with u ??

Ah, thanks for the concern Debra, yes, I'm fine, just always aware and trying to keep WG in perspective each and every day. I see WG as a continuous daily, even minutely, trip which I didn't want to take in the first place...I'm a firm believer in the old movie quote about the price of the ticket (of life) was cheap, so hold on for the ride...I'm aholdin'!!!! Thanks again Debra!

[carriej22]

Scary eh?

I have odd moments of feeling "normal". This usually is when I first wake up in the morning before I've drugged myself for the day. Sometimes I wonder if I really need all these pills. I'm 23, id like to have this body for Atleast another 60 years. However I know the chances of that happening are slim.

Sometimes I wonder if I will ever be able to go somewhere and feel myself. Christmas is coming... I have nothing ready. I usually go on several shopping trips and enjoy myself. Now all I can think of is getting home from wherever I am as soon as possible because home is safe. Bed is near, bathroom is familiar if I get sick. sigh.

Most days I act pretty normal. The girls I work with always comment on how positive I am and that I'm always smiling or laughing. What would you like me to do, pout and whine? I try to enjoy everyone's company as much as I can. I have lost many of my friends my own age because they simply can't deal with it. I'm not sure if they don't want to understand, or if I'm just not that much fun to be around anymore. Probably a bit of both.

I try to be realistic but I guess none of us really knows what is in store for us. It's a bit scary for me being so young. Will I only live 5 years? 10? 20? None of those are enough. When it comes to it, no one wants to know how they are going to die. It's enough to fester in someone's brain and cause some serious issues.

Looks like I will just have to carve out as normal a life as possible and try not to be a financial burden for my husband and family.

Nothing much fun about it all.

[annekat]

Carrie, there are people on the forum who've had WG for 40 years and longer. I don't believe you are going to die in 5 or 10 or 20 years. (I'm 60 and I'm counting on living another 20 years, at least.) I think there's a good chance you'll live a normal lifespan. Maybe it's wishful thinking, but there's also the fact that there is still a lot of time for advances in treatment and breakthroughs in prolonging people's lives, which you are young enough to benefit from. I know you've been going through worse stuff with Wegs and the drugs than I have, every case is different, but you haven't had it even a year yet. I've had it a year and two months longer than you have and am really doing pretty well. My energy level is reduced, my sinuses still get drippy and crusty, and I cough a lot.... but otherwise, I can do just about anything I'd normally be doing at my age. If I would make myself get out and walk every day, I'm sure I'd feel even better.

I do understand your feeling that at your age, Wegs could be robbing you of a normal life and you have more years to be affected by it than someone my age. But I'm hopeful that things will get much better for you. There's someone on here who has climbed Mt. Everest!

You are right, it isn't fun, and someone your age should be having fun.... heck, we all should be having fun. It is normal to get depressed about it, to have emotional ups and downs. Thank goodness for your supportive and loving husband, and the true friends and family you have who will never abandon you. I wouldn't worry about being ready for Christmas, as I imagine others will come through to make it a good one, and I'll bet that next year you'll be out there shopping and having a good time with everyone else. In the meantime, enjoy the luxuries of your bed, your dogs and cats, and your familiar, comfortable surroundings.

[KathyB]

i was wondering if anyone is just taking pred. I'm still on 5 mg. and my stomach is so messed up ...it feels like I have an ulcer and recently I have been getting really bad stomach graps. My dr. took x-rays of my stomach the other day but he is off today so don't know the results.I think I may have him schedule me an upper endoscopy. my reumy prescribed me bactrim to take but I was given the generic which again another drug I can't take,it made my lab work go crazy so my kidney dr. told me to stop. Also is anyone getting the flu shot ???
Hi Debra -- I'm on 5 mg prednisone which is as low as I've gotten since dx back in early September, 2011. I started at 90, got down to 30, then went back up to 60 when I had pneumonia in November, 2011. By late March, I was down to 5 and have been there ever since. That's my only anti-WG med except for two rounds of Rtx (last one in March, 2012). My Ig rates are still too low to go another round of Rtx (originally scheduled for September, 2012). I received a flu shot two weeks ago on the advice of my rheumotologist.

KB

[KathyB]

Hi Carrie -- You have done such a wonderful job expressing your feelings, asking questions, and sharing your thoughts on our forum. I think you can sense from everyone their care and concern and best wishes. Being in a funk over this disease is no fun and we all continue to battle with the details on a daily basis. Meds, physical changes & limitations, lifestyle adjustments, etc. They all seem to deter us from living life to its fullest. I've nearly crumbled on many occasions and am still struggling to receive disability so I can live at a level of financial security. No matter what happens, I have my life...it includes an incredible husband, phenominal children/grandchildren/family, supportive friends/colleagues, and my faith that the Lord's will be done. I hope you are able to find all the good that surrounds you and celebrate your blessings every day. Sure, the negative still exists, but somehow the positive energy prevails!

KB

[Sangye]

I'm just catching up on posts... Carrie, your posts are heartbreaking. I admire your courage in posting the pictures. I have never seen striae so bad from pred. I have a lot as well but I'm a 49 year old nun so it doesn't bother me nearly as much. I can sure relate to the weight gain and the despair about it, though. No one warned me about it and I gained 40 lb in 3 months. I thought I was just hungry because I was so depleted and anemic. With the inability to exercise and a few more rounds of high dose pred, I've put on another 20 lbs in the 6 years since diagnosis. At least I'm not gaining anymore, not even when I go on high dose pred. It's the number one thing I wish I could change. It's causing several complications and it prevents me from doing a lot of things. I can't imagine how much more difficult it must be for someone as young as you. :sad:

To clarify: prolonged high dose pred always causes steroid-induced Cushing's. That's why we get the moon face, buffalo hump, fat pads above the collarbone, abdominal weight gain, thinning of the skin, change in hair growth (increase on the face, decrease on the head). The striae are a result of the thinned skin being overstretched. People on pred get varying degrees of secondary Cushing's and it does resolve itself as you taper and go off it. Unfortunately as we know, the weight gain and striae don't always go away.

Are you taking vitamin C and other supplements to support connective tissue? That helps strengthen your skin and can help resolve the striae. Also, I recommend that you see an endocrinologist. There might be something else that can be done. Even though Dr Seo is a great Wegs doc, he wasn't able to help me with some steroid issues. I'm glad I asked to see an endocrinologist.

I also suggest that you see a holistic doctor to help with supplements. Pred is a big hit to the adrenals glands, which don't always recover as you taper. Even if you can get off pred, your adrenals still need help recovering and rebuilding.

Hang in there, Carrie. The double whammy of pred is that it changes the appearance and it makes us prone to depression, which can become a vicious cycle.

[Sangye]

Regarding the flu shot: The nasal mist spray vaccine is a live virus. The shot is not a live virus. However, people who receive the live vaccine can shed live virus for up to 3 weeks. Take caution not to be around anyone who's gotten the nasal mist vaccine within the last month.

Personally, I wouldn't touch either one with a 10-ft pole. Many of the shots have mercury. And there are other nasties, like formaldehyde. Also note that it contains antibiotics, which you may have be allergic to.

We've had 4 members in this group who can directly trace their Wegs onset and/or flare to the H1N1 shot (which is part of the flu shot in the US). Vasculitis is listed as a possible risk on the package insert.

This (http://www.nvic.org/) is a good website to read up on the flu vaccine and other vaccines. This page (http://www.nvic.org/Vaccines-and-Diseases/Influenza.aspx) has general info about the flu vaccine, with a link to a Vaccine Ingredients Calculator, so you can see exactly what is in a particular vaccine and make an educated, informed decision.

There are 2 general ways that vaccines can harm: immediate and over time. The immediate reactions are easier to identify, but not always. The harm that can occur over time is more along the lines of immune system dysfunction and toxicities leading to immune disorders or other conditions. I had a lot of vaccines during my Peace Corps service and my immune system was never quite the same, even though I didn't get Wegs for another 17 years. Immune dysregulation often occurs slowly.

Whether or not you choose to get the flu shot, Vitamin D has been shown to be flu-preventive as well as decreasing the severity of flu. Most people are deficient in vitamin D. Those with AI diseases and/or on pred must get D levels checked on a regular basis. It takes a whopping 12,000 IU of daily vitamin D for me to stay in range. You should never take higher doses of D without getting labs done because it accumulates in the body.

No one, not even immune-compromised people, are sitting ducks for the flu. There is a lot we can do nutritionally to avoid getting it, without adding harmful chemicals to our bodies.

[Debbie C]

KathyB...did u get ill at all from the flu shot. And u r not on Bactrim or anything else. My reumy is probably going to be really mad at me for not taking the bactrim..but when I saw my blood work and my kidney dr. said get off it. I did.

[carriej22]

Thanks folks, it means a lot. I don't like using my age as an excuse for anything as I have always got out and taken what I wanted in life, regardless of whether people thought I could or not. I purchased my own house, opened my own business, and got married all before I turned 23 years old.

However I feel if I was older, I would be able to handle this situation much better. At my age, social interaction and having fun are very important. I invite you all to look back to your early twenties. What were you doing? I know what the rest of the people my age are doing, and it sure isn't what I'm doing. I always put work first, play later. I feel like I worked so hard to get the things I have, and now it's all gone to the birds. My business is failing and I'm not sure it can be recovered, the government won't help me, I feel like a financial burden - plus I am having a hard time working period. Not to mention I am having a hard time dealing with the fact that I have a disease, and that there really is something horribly wrong with me.

I'm sure I will look back on this and not feel so sour towards it... But I am just holding a lot of anger right now.

I was sick for three weeks with the flu, still got the cough. I've never been knocked on my butt so hard in my life. It has put a new fear of being sick into me.

[Dirty Don]

Thanks folks, it means a lot. Not to mention I am having a hard time dealing with the fact that I have a disease, and that there really is something horribly wrong with me.

Carrie, if I was your age with this disease, I'd feel and probably speak out just like you. It's hard enough to accept 'something's wrong' with me, but at your age, I cannot imagine the anger at what's been taken away from you. On the other hand, your choices are few...but, just think how tough you'll be by the time you are 'our' ages on here! LOL! NOT speaking for everyone...jeez! Now...where's that coffee...??????

[annekat]

Oh, Don, you and your coffee!! Actually I'm having my first of the day right now.

Carrie, I admire you so much for all that you've done at your age.... buying a house, starting a successful business, and marrying a great guy! It does seem so unfair that WG has so negatively changed the life that you should be enjoying as a result of all that. You have every right to be angry and to vent as much as you want on here. That is part of what this forum is for, and we are here to listen.

I think it is very reasonable to hope and expect that you will be in remission while you are still in your twenties, and will be able to get back to your old life of having fun and being fully involved in your work, whatever it may ultimately turn out to be. We older folks may be doing pretty much what we'd be doing anyway.... not a whole lot (not speaking for everyone!). But you have a whole life ahead of you. I'm anxious to see how you are doing in 6 months. In the meantime, I hope you are getting the best medical care you can. (I know I'm not, and could try harder to do so, but am doing OK, so I continue to procrastinate....)