Steroids and side effects....

Snifhvide · 07-14-2008, 12:08 PM

Quote:

Originally Posted by Scots Kat

Hi Erin,

Yep, I've got all the sexy side-effects you've mentioned - major moon face, swollen belly, facial hair, and massive stretch marks all over, luckily I've not had the emotional symptoms - no craziness yet (maybe I should warn my husband though). It's frustrating because I'm so grateful for being able to move around without help, but mad about how I look. I know it shouldn't matter, but as a 29 year old woman why do I have to choose between functioning normally and looking human!?! I feel guilty too all the time because I know there are people so much worse off than me, not just with MG but cancer etc etc, but why can't I be healthy too?!? My husband has only been to the doctor once in all the time I've known him and that was when he broke his hand playing football!

I know what you mean about not being recognised - my husband and I live in Scotland and we just came back to Canada for a visit this week, when I got off the plane my mother in law barely knew me - she burst into tears. My parents were more prepared because they've seen the swelling gradually get worse on our webcam. Now that I'm back in Canada I find myself not wanting to leave the house because I'm embarrassed at how I look and I don't want to run into old friends who don't know I've been not well this year. I've never been a superficial person, but I certainly sound it now!! Sorry for complaining!!

On to your questions - I was diagnosed about 6 years ago. Looking back at photos I've had droopy lids since about 16 and I have another eye condition which causes double vision so I didn't pay any attention to that symptom. When I was diagnosed I didn't show any signs of an abnormal thymous so I've not had a thymectomy - although I really want it re-checked. I LIVE on mestinon!! I take 60 mg every three hours and on my non-steriod day I find I am counting the minutes until I can take my next dose. I can really feel the difference on the alternate days. I'm also taking Azathioprine (150 mg daily) and it seems to be kicking in now - it took about 7 months to start working. I've had one dose of Ivig, but it didn't do too much for me - in fact I was pretty well knocked out for a week.

It's nice to share stories and experiences here - I figure if I can laugh about some of this stuff then I won't cry!! All the best!
~Kathy

You know - if you can't complain about the side effects of steroids here, where can you?

I think it's important that we recognize that we are no saints. As women of course we want to look attractive (and I guess guys want that too). When we were healthy, I bet we didn't pay more attention to our looks than others, but with moonface and facial hairs on top of not being able to walk etc. etc. - it's just not fun.

I've often tried to tell myself that I'm lucky for being more healthy than others, but that doesn't mean I feel good. Should we make some kind of graded list so only people on top of the list are allowed to complaint? "You only have 2 broken legs and a broken hip - it will mend so you are not allowed to complain or feel sorry for yourself".

Honestly, I think we will do better if we allow ourselves to get angry / sad / etc. once in a while. The trick is not to be so all the time. But letting some steam out now and then is better than building it all up inside because we ought not to feel like that (says who anyway? - if anyone actually says so, they are probably amongst the ones who never had anything but a cold in their whole life).

It's hard with inlaws, I think. I got ill only ½ year after I met my husband, and since then it has only gotten worse. My mother in law once admitted that ofc. she would rather have had that her son had fallen in love with a healthy woman, and now - as a mother of a son - I must admit I feel the same. I would be sad to see him love someone ill, because it does put a stress on the relationship, so it's not her being mean, she is just a very honest person. She also said that she likes me, because she knows I love her son like no one else, and I support him in my own way as no one else can. And that last part I try to remember when I feel embarrassed or sad about being ill. So maybe your face is big now - inside you are still that gorgeous woman your husband fell in love with! And no one else can love and help him through love like you can!

And btw the facial hair can be removed with laser - I've had that done and it works so good. And never was I more happy than when I could stop looking for those big, black spiderleg-hair in my face in the morning, so I could get rid of them before anyone saw me.

erinhermes · 07-14-2008, 12:10 PM

Hey there! How are you today? Yesterday was a tough day for me - barely made it off the sofa - but today is much better!

Now about the TMJ.......I was having problems chewing and swallowing (plus I really do have it) but my "so called specialists" thought that all of my problems stemmed from it - I kept asking them why I sounded drunk (and that they couldn't account for), so I put my list of symptoms together for my regular GP and took it in to her. She knew what I had IMMEDIATELY and told me to see Dr. Ibrahim ASAP (in fact, she called for me and scheduled the appt. - she is the BEST) as well as scheduled a CAT scan and MRI. I had to have the invasive sternum splitting thymectomy b/c the cat scan revealed hundreds of "spots" on my lungs - something that my doctors were quite concerned about, but have since gone away

.I met with my pulmonologist, who gave me a clean bill of health, so now all I have to contend with are the side effects of Prednisone and some weird blood issues that no one can figure out - hence the monthly blood tests

I HATE THEM, but at the same time know I need them in order to stay healthy. What meds are you on? I can completely relate to your inability to keep your mouth shut ; my face was basically "frozen" when I saw my neuro - I couldn't pucker to kiss my husband or son or even drink - it was so frustrating! That, and people would always tell me how tired I looked - well no crap (!) I couldn't keep my eyes open, plus my eyes were twirling around like mad and hurt all the time......Enough about me......when you get a chance, let me know how YOU are today. OK, one last quick question: what are ABS? Erin

Quote:

Originally Posted by eeyore2

The reason for the every other day dosing goal is that it makes you adrenals 'think' about the need to make steriods on the alternate day, which is better for you in the long run.

Why did they think you had TMJ---was it because you were clenching you teeth to help you breath, which results in jaw pain? I had a mouth guard made for that reason, although I also use BIPAP and I don't have the facial muscle strength to keep my mouth closed with it now.

What type of thymectomy did you have? Transcervical , transsternal, extended... Where your Abs positive?

erinhermes · 07-14-2008, 12:29 PM

Thank you for that! I laughed when I read the first line - you're soooooo right! I often catch myself alternating between feeling guilty for wishing someone else had this, and then getting angry (why me,God?), and then realizing it could be much worse, but the truth of the matter is that it is what it is, and there is nothing I can do but try to keep my spirits up and keep pushing for recovery. I never thought I was vain, but now worry about my looks all the time and that is just silly b/c with the help of steroids I can swallow, walk, and do most of the things that I used to do. I think it's more of a control issue for me, simply b/c I no longer have control over my body. My hubby has been the best - simply the best. He tells me every day how beautiful I am

, and has been to every doctor's appt. I've made, but it has been hard on my son - he's just not used to seeing me like this. I was always the young mom - he's 16, I'm 34, so he liked the way I looked before, but he has really matured through this whole thing, and for that I'm grateful. MY father-in-law has actually been the best about this whole thing. When I was in the hospital he was there every day, quietly sitting in a chair, just being there for me. What really surprised me is how many people suddenly became very "busy" and no longer had time for me - my family especially. That really hurts; I'm not contagious, nor will I bore them with "me,me,me" stories, I just wanted company b/c I still get scared, although my neuro has assured me that I will NEVER be as sick as I was when I was admitted to the ICU - he told me that it will be a gradual process, and that he will look after me - plus he is the type of doctor that calls within 5 min. (him, not his secretary) and really listens to me........ I'm going to look into the laser thing TODAY - one less thing to worry about

Thank you for your support. I really do love this site - it really helps!

Quote:

Originally Posted by Snifhvide

You know - if you can't complain about the side effects of steroids here, where can you?

I think it's important that we recognize that we are no saints. As women of course we want to look attractive (and I guess guys want that too). When we were healthy, I bet we didn't pay more attention to our looks than others, but with moonface and facial hairs on top of not being able to walk etc. etc. - it's just not fun.

I've often tried to tell myself that I'm lucky for being more healthy than others, but that doesn't mean I feel good. Should we make some kind of graded list so only people on top of the list are allowed to complaint? "You only have 2 broken legs and a broken hip - it will mend so you are not allowed to complain or feel sorry for yourself".

Honestly, I think we will do better if we allow ourselves to get angry / sad / etc. once in a while. The trick is not to be so all the time. But letting some steam out now and then is better than building it all up inside because we ought not to feel like that (says who anyway? - if anyone actually says so, they are probably amongst the ones who never had anything but a cold in their whole life).

It's hard with inlaws, I think. I got ill only ½ year after I met my husband, and since then it has only gotten worse. My mother in law once admitted that ofc. she would rather have had that her son had fallen in love with a healthy woman, and now - as a mother of a son - I must admit I feel the same. I would be sad to see him love someone ill, because it does put a stress on the relationship, so it's not her being mean, she is just a very honest person. She also said that she likes me, because she knows I love her son like no one else, and I support him in my own way as no one else can. And that last part I try to remember when I feel embarrassed or sad about being ill. So maybe your face is big now - inside you are still that gorgeous woman your husband fell in love with! And no one else can love and help him through love like you can!

And btw the facial hair can be removed with laser - I've had that done and it works so good. And never was I more happy than when I could stop looking for those big, black spiderleg-hair in my face in the morning, so I could get rid of them before anyone saw me.

erinhermes · 07-14-2008, 12:58 PM

Hey Kathy! Iknow what you mean about the side effects versus just being able to "live normally" again - it's a catch 22. Hopefully you won't go through the crazy mood swings ( I was always high strung to begin with, so they DID NOT HELP IN THAT AREA). MY poor son and hubby never know when I'm going to be my normal self or a crazy lady; trouble is, neither do I

It's just so damn hard sometimes. This disease is just so unpredictable. That's the hardest part for me. I'm a self confessed "control freak" and this has just thrown me for a loop. The only good thing to come out of this is meeting so many nice people

, all of whom seem to actually care, and being able to vent! I also find myself not wanting to leave the house. It's just too hard sometimes. I mean I'll think I look "normal" and then someone will remark to the contrary. They are not being mean, they are just shocked at my appearance - you can see it on their faces, and that really hurts. I've always had droopy (or hooded, as I like to call them) eyelids as well, so to me that wasn't a major concern. What finally got my attention was when I could no longer see/swallow/chew/walk/talk. It all happened so slowly though that everyone (myself included) just thought I was either depressed/lazy - one of my docs thinks that it had been coming on for at least 3 years, though my illness brought on a crisis..........I didn't have any abnormalities in my thymus either, but all of my docs agreed having it removed was my best hope at returning to "normal" life - it was really scary, but my blood work came back slightly better after only a few days. Mestinon really is the wonder drug! I remember how I felt when it first hit my blood stream - I could swallow ice chips for the first time in months and am still hooked on them. I could NOT believe the difference, though I really started to feel better after my IV IG - that felt great! I 've had 2 and hope to never have another (only b/c I hate needles). What is Azathioprine? Is that some sort of steroid? I'm on 420 mg. of Mestinon and 50 mg. of Prednisone daily, all of which make a HUGE difference. Before, I couldn't get out of bed or do anything for that matter. Have you noticed any unusual cravings? I crave whole milk 24/7, as well as juice (orange/cranberry),baby bananas, and some other really weird food combos (sour cream w/hot sauce) and can't even look at other things like soda (I used to drink @ least 4 a day), coffee, or spicy foods (my favorite thing before I was so sick) - it's like being pregnant - weird! I think one of the hardest things for me is how other people responded to my illness. People that I had known for years suddenly disappeared. That really hurts. Others however have been amazing. I guess you really find out who your friends are when the chips are down. Also, sites like this one are a major thing for people like me. It has been amazing to share stories, laugh and cry together b/c so few people know what we are going through. When you get a chance, give me a buzz and tell me how you are doing!

Quote:

Originally Posted by Scots Kat

Hi Erin,

Yep, I've got all the sexy side-effects you've mentioned - major moon face, swollen belly, facial hair, and massive stretch marks all over, luckily I've not had the emotional symptoms - no craziness yet (maybe I should warn my husband though). It's frustrating because I'm so grateful for being able to move around without help, but mad about how I look. I know it shouldn't matter, but as a 29 year old woman why do I have to choose between functioning normally and looking human!?! I feel guilty too all the time because I know there are people so much worse off than me, not just with MG but cancer etc etc, but why can't I be healthy too?!? My husband has only been to the doctor once in all the time I've known him and that was when he broke his hand playing football!

I know what you mean about not being recognised - my husband and I live in Scotland and we just came back to Canada for a visit this week, when I got off the plane my mother in law barely knew me - she burst into tears. My parents were more prepared because they've seen the swelling gradually get worse on our webcam. Now that I'm back in Canada I find myself not wanting to leave the house because I'm embarrassed at how I look and I don't want to run into old friends who don't know I've been not well this year. I've never been a superficial person, but I certainly sound it now!! Sorry for complaining!!

On to your questions - I was diagnosed about 6 years ago. Looking back at photos I've had droopy lids since about 16 and I have another eye condition which causes double vision so I didn't pay any attention to that symptom. When I was diagnosed I didn't show any signs of an abnormal thymous so I've not had a thymectomy - although I really want it re-checked. I LIVE on mestinon!! I take 60 mg every three hours and on my non-steriod day I find I am counting the minutes until I can take my next dose. I can really feel the difference on the alternate days. I'm also taking Azathioprine (150 mg daily) and it seems to be kicking in now - it took about 7 months to start working. I've had one dose of Ivig, but it didn't do too much for me - in fact I was pretty well knocked out for a week.

It's nice to share stories and experiences here - I figure if I can laugh about some of this stuff then I won't cry!! All the best!
~Kathy

erinhermes · 07-14-2008, 02:30 PM

If the ABS thingy is my automimmune antibodies, then they were WAAAAY high - my neuro said a "normal" reading is .04 - mine was over 600 when I was admitted to the ICU, howver they did go down right after my thymectomy..........

Quote:

Originally Posted by eeyore2

The reason for the every other day dosing goal is that it makes you adrenals 'think' about the need to make steriods on the alternate day, which is better for you in the long run.

Why did they think you had TMJ---was it because you were clenching you teeth to help you breath, which results in jaw pain? I had a mouth guard made for that reason, although I also use BIPAP and I don't have the facial muscle strength to keep my mouth closed with it now.

What type of thymectomy did you have? Transcervical , transsternal, extended... Where your Abs positive?

eeyore2 · 07-14-2008, 04:16 PM

Sorry about the abbreviation Abs---I did mean antibodies, but as my spelling sucks, I like to shorten things up

I can't believe that you had to get that bad before anyone figured out anything...I guess it is becoming a common occurance.

Last nite an today I'm not doing so good--I have another bout of asthmatic bronchitis (b/c I'm refluxing from my g-tube and aspirating the mushy stuff I'm trying to eat. I'm making arrangements to get the J-tube replaced which should eliminate the reflux. I also got prednisone for the asthma and leviquin for the infection (which of course I don't have the muscle strength to cough up)

Hopefully I'm preventing a trip to the ED.

This all sucks, but at least things should get better and my Hopkins appoint is only 8 days away.

Quote:

Originally Posted by erinhermes

Hey there! How are you today? Yesterday was a tough day for me - barely made it off the sofa - but today is much better!

Now about the TMJ.......I was having problems chewing and swallowing (plus I really do have it) but my "so called specialists" thought that all of my problems stemmed from it - I kept asking them why I sounded drunk (and that they couldn't account for), so I put my list of symptoms together for my regular GP and took it in to her. She knew what I had IMMEDIATELY and told me to see Dr. Ibrahim ASAP (in fact, she called for me and scheduled the appt. - she is the BEST) as well as scheduled a CAT scan and MRI. I had to have the invasive sternum splitting thymectomy b/c the cat scan revealed hundreds of "spots" on my lungs - something that my doctors were quite concerned about, but have since gone away

.I met with my pulmonologist, who gave me a clean bill of health, so now all I have to contend with are the side effects of Prednisone and some weird blood issues that no one can figure out - hence the monthly blood tests

I HATE THEM, but at the same time know I need them in order to stay healthy. What meds are you on? I can completely relate to your inability to keep your mouth shut ; my face was basically "frozen" when I saw my neuro - I couldn't pucker to kiss my husband or son or even drink - it was so frustrating! That, and people would always tell me how tired I looked - well no crap (!) I couldn't keep my eyes open, plus my eyes were twirling around like mad and hurt all the time......Enough about me......when you get a chance, let me know how YOU are today. OK, one last quick question: what are ABS? Erin

erinhermes · 07-14-2008, 04:43 PM

Yep, my antibodies were WAAAAAAY up when I was admittted - I was so scared! I had lost approx. 30 lbs. in about a month cuz' I couldn't swallow or anything for that matter...what really scared me was when I stopped breathing -that was the final straw. I called my dr. and was admitted IMMEDIATELY to the ICU where I spent the next 9 days being hooked up to every tube known to man

......I think that's why all of my docs wanted to do my thymectomy IMMEDIATELY. The transsternal one hurt like crazy, but I do think it will help in the long run....... Now as for you, GOOD LORD! Where the heck is your doctor in all of this? Where do you live? I mean really! There has got to be someone who can take better care of you, right? That makes me so angry, b/c we are made to feel crazy/neurotic when we are really sick. When did you get the Prednisone? Hopefully it will kick in soon, cuz' it made all the difference in the world to me - that and the IV IG. Have you HAD an IV IG infusion yet? Plasmaphoresis? Anything to get you back on track? Things will get better, but it sounds like you need help NOW! I can't wait to hear what your Hopkins appt. comes up with........maybe then you'll get the help you need to feel better!

I have sinus problems that my GP presribed an inhaler for - would something like that help? Keep me in the loop and let me know how you are, or just email me if you'd like to talk. I'll keep you in my thoughts and prayers

...........

Quote:

Originally Posted by eeyore2

Sorry about the abbreviation Abs---I did mean antibodies, but as my spelling sucks, I like to shorten things up

I can't believe that you had to get that bad before anyone figured out anything...I guess it is becoming a common occurance.

Last nite an today I'm not doing so good--I have another bout of asthmatic bronchitis (b/c I'm refluxing from my g-tube and aspirating the mushy stuff I'm trying to eat. I'm making arrangements to get the J-tube replaced which should eliminate the reflux. I also got prednisone for the asthma and leviquin for the infection (which of course I don't have the muscle strength to cough up)

Hopefully I'm preventing a trip to the ED.

This all sucks, but at least things should get better and my Hopkins appoint is only 8 days away.

eeyore2 · 07-15-2008, 11:22 AM

I live in outside of Richmond and there is only 1 neurology group in town. I have IVIG 0.6mg/kg every 3 weeks (last dose last Mon, so it should be in full effect--before I started the IVIG I couldn't walk and was on O2---I had a 5 day course and have been having it monthly (or less now) for the past 4 years...it has been the only thing that actually worked---but it seem that it is not enough anymore

I started a steroid taper (60mg x3d, 40 x3d...) yesterday and it helped my breathing...I was wheezing alot. Now I can at least walk to the kitchen without significant SOB.

My swallowing is worse today, but I scheduled to have a J-tube (into y small intestine so I won;' reflux) placed through my G-tube tomorrow, so after that I would be eating anymore (right now I'm using the G-tube, but do to reflux I can't put enough in so I supplement with mushy stuff like soft boiled eggs. Befroe the G-tube I lost 30 lbs also (in 4 weeks), although I don't need to see any of that weight back.

I have no idea what the neuro's down here are thinking...I went to me primary care yesterday for the breathing stuff and she was appalled at their lack of initiative, but there is not much she can do..except wait for my appoint next week.

Hopkins better come up with something or I may just go ballistic.

Are you feeling well today?

erinhermes · 07-15-2008, 04:46 PM

Good LOrd! Only one neuro group? I always wanted to live in a small town, but it is much less appealing now......

. I've only had 2 IV IG treatments, but they made a huge difference for me; I could actually feel it going into me - - great stuff, but having to go back every 3 weeks must be frustrating (and for 4 years?) ......Do they keep a PICC line in you? I'm TERRIFIED of needles, so that was the only way to go for me. It sounds like you've been through the ringer with this stupid disease...I'm really sorry to hear that. Do you have any kids/spouse to help you? I really hope so! My son and hubby have been great, though they sometimes get frustrated/scared by this whole thing...Has your doc given you any kind of timeline for remission, or have you just been left in the dark the whole time? Why haven't they suggested a thymectomy? MY blood work was a LITTLE better a few days after mine, and I did not have a thymoma or any sign or abnormalities with my thymus, but every doc I went to told me it was my only hope at remission, so I'm curious as to why it hasn't been done for you.....You also have asthma, right? Or are the breathing problems only caused by your mg? That must be really scary for you - I know it would terrify me (one of my worst fears, in fact) Hopkins will come up with something. I'll keep you in my prayers. I don't know how you feel about it, but in my case it has worked.

Today has been rough. I've got 2 abcesses, thrush and a crazy sinus infection, so I'm a little down today. I just get so scared at the thought of having another crisis that I have to take my xanax daily - and the steroids definately don't help with anxiety

I shake all the time now and my face is huge, but at least I can walk/talk/eat now. Take care, and let me know how you are........I really love hearing from you.

Quote:

Originally Posted by eeyore2

I live in outside of Richmond and there is only 1 neurology group in town. I have IVIG 0.6mg/kg every 3 weeks (last dose last Mon, so it should be in full effect--before I started the IVIG I couldn't walk and was on O2---I had a 5 day course and have been having it monthly (or less now) for the past 4 years...it has been the only thing that actually worked---but it seem that it is not enough anymore

I started a steroid taper (60mg x3d, 40 x3d...) yesterday and it helped my breathing...I was wheezing alot. Now I can at least walk to the kitchen without significant SOB.

My swallowing is worse today, but I scheduled to have a J-tube (into y small intestine so I won;' reflux) placed through my G-tube tomorrow, so after that I would be eating anymore (right now I'm using the G-tube, but do to reflux I can't put enough in so I supplement with mushy stuff like soft boiled eggs. Befroe the G-tube I lost 30 lbs also (in 4 weeks), although I don't need to see any of that weight back.

I have no idea what the neuro's down here are thinking...I went to me primary care yesterday for the breathing stuff and she was appalled at their lack of initiative, but there is not much she can do..except wait for my appoint next week.

Hopkins better come up with something or I may just go ballistic.

Are you feeling well today?

eeyore2 · 07-15-2008, 05:05 PM

An infection and thrush...that really sucks--when I had thrush it hurt to swallow. What are the abcesses from--the surgery?

Yes I do have asthma, but my respirator muscles are weak also NIF and PIF of ~-20 and +30. Because I'm aspiring and refluxing that triggers the asthma and then I don't have the muscles to cough stuff out...it is just a mess. Today I had a slightly better attidue...probably due to the predisone...it tends to make my hyper...just before it makes me totally neurotic and pissy.

I used to have good veins...now I have 1 left

Steriods (and abuse) tend to destroy veins

I take all the prayers I can get--and I've got you on my list also.

I have 3 kids (8-14) and an awesome hubby (and 2 rowdy golden retrievers)...my older 2 are away at camp for 2 weeks so things are quiet.

My neuro won't give me a prognosis..or any treatment alternatives...he just tells me to rest . My pulmonologist tjust tells me to come back the the ED if my breathing gets bad again (last adminision my NIF and PIF were -12 and 12...which is getting too close to being intubated.

I'm hangin in there. I'm sorry you've had a bad day.

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