[erinhermes]

I was recently diagnosed with MG (March 6th) and underwent a thymectomy on April 22nd. Since my diagnosis, I have been on steroids (between 60-80 Mg a day) and have noticed that blood work is now a BIG ISSUE! Now for most people this isn't a big thing, but I'm EXTREMELY afraid of blood work and my veins just stop giving blood! When I do have blood work (monthly),I look like a junkie with big track marks. Has anyone else experienced this? I just don't understand why this is happening! I used to be able to have blood work done with no problems, so I'm assuming it's the steroids. I also had a PICC line put in and still experience pain/pressure at the site, and can actually FEEL the blood pumping harder at the site - it scares me a little. Any information would be great. I know steroids are a necessary evil, and I know that I'll probably be on them for at least a year, but am hoping that some of the side effects go away as my dosage is reduced.........

[Scots Kat]

Hi Erin,
I was on 60mg of pred daily, but now I'm down to 60 mg every second day. I'm not sure why my neuro suggested weaning me off the drug that way instead of minimizing my daily dose - but I just do what I'm told! I have noticed LOADS of ridiculous side effects from the steriods, mostly superficial, but never had any problems with blood work. Well, no more problems than before I guess. I've always had tricky veins so I also usually end up looking a bit like a "junky" as you so aptly put it! My side-effects haven't stopped yet (which is disappointing because i really hoped my moon face would be gone for the summer) but I think they are getting a little better.

I would still take all the stupid superficial problems though and be able to walk!! I'm so much stronger than I was a few months ago! And as much as I hate the steriods, I also love them - they made me able to function independently again.

All the best with your treatment!
~Kathy

[redtail]

Hi Erin

welcome to the forum!!
I was diagnosed about 6 years ago, and have been on steroids since then, varying from 60mg daily, and now down to 15mg alternate days, am also on cellcept.
I have monthly bloodtest, and have done for all those years. I dont think I have ever had a problem, except 2 months ago, when my friendly phlebotomist put the needle in my right arm, the pain was HUGE!! The same lady has been doing it for ages, so no problems there, we decided we would stick to the left arm in future.
Sorry I can't be of any help.
take care, and hope to see you round here in the future, its a great place!!

[erinhermes]

Thanks for responding! THis site is a huge life saver! It makes me feel like I'm not alone in this, which is HUGE for me. Now how long did it take to wean you down to 15 mg. every other day? How did you feel when you were being weaned? I tried about a month ago, but felt "unplugged" mid-day and had to stay @ my 60 mg. , but my doctor said that it was common and we may have to "bump it up" to 80 mg. sometimes.......I don't know how common that practice is, but I do know that he really is the best so I guess I shouldn't question him. My hematologist/oncologist was really surprised the other day when I told him I was still on 60 mg. per day. I'm still anemic, so I go in every month. This MG really threw me for a loop. When I was finally admitted to the ICU everything started shutting down on me - it was really scary. I'd wake up with a stethoscope on my chest and a doctor saying I may have to have a pacemaker (I'm 34), I was told I had hundreds of "spots" on my lungs, and was given that awful bone marrow test - that one really hurt - and that was just the beginning. I feel much better now, and am praying daily for remission and I do know how truly blessed and lucky I am, but just get scared sometimes. It just all happened soooooo fast! I mean, I was diagnosed on March 6th and had surgery on April 22 - it made my head spin! Though in retrospect I should have realized how sick I was, but was told by many "specialists" that it was TMJ, or my teeth, or sinuses......thank God for Dr. Ibrahim - he diagnosed me in about 5 min.and started me on Mestinon that day. I thought he was being dramatic, but looking back now I can see how truly sick I was THEN!!!!!! Take care!

Originally Posted by redtail

Hi Erin

welcome to the forum!!
I was diagnosed about 6 years ago, and have been on steroids since then, varying from 60mg daily, and now down to 15mg alternate days, am also on cellcept.
I have monthly bloodtest, and have done for all those years. I dont think I have ever had a problem, except 2 months ago, when my friendly phlebotomist put the needle in my right arm, the pain was HUGE!! The same lady has been doing it for ages, so no problems there, we decided we would stick to the left arm in future.
Sorry I can't be of any help.
take care, and hope to see you round here in the future, its a great place!!

[erinhermes]

Thank you so much for responding! Wow! You're @ 60mg. every other day? My doc hopes to wean me to 40 mg. every other day - I also don't understand why we just can't take 20-30 mg. every day versus the BIG dose every other day.......... These steroids have made me blow up like a balloon in my face and stomach, plus I now have acne and facial hair - sexy - but am also truly thankful for them cuz' they did save my life......I know it sounds silly, but it hurts my feelings when I go out in public and people who have known me for years no longer recognize me - I didn't think it was that bad. The night sweats and panic attacks are the worst for me. I wake up just drenched - do you have any of these side effects? Oh, and the MOOD SWINGS! Good lord! Those are awful!
I started on 50 mg yesterday per my doc and know that it's a step in the right direction, but get so scared thinking I
am going to feel like I used to - - you know the feeling - - afraid to go to sleep cause you don't know if you're going to wake up, being unable to walk, talk, swallow, or even breathe. MG really did a number on me. Have you had a thymectomy? Are you on Mestinon as well? When were you diagnosed with MG? I'm sorry about all the questions, but this is such a rare disease and I'm still so confused about the whole thing, though very, very grateful that my docs were able to contain it and keep me relatively healthy. It's just hard sometimes, because this darn disease always keeps me guessing - I never know how I'm going to feel the next day and for a control freak, perfectionist like me that's hard. I do have great doctors who are vigilant about my health and for that I'm grateful. Take care and let me know how you are doing! Erin

Originally Posted by Scots Kat

Hi Erin,
I was on 60mg of pred daily, but now I'm down to 60 mg every second day. I'm not sure why my neuro suggested weaning me off the drug that way instead of minimizing my daily dose - but I just do what I'm told! I have noticed LOADS of ridiculous side effects from the steriods, mostly superficial, but never had any problems with blood work. Well, no more problems than before I guess. I've always had tricky veins so I also usually end up looking a bit like a "junky" as you so aptly put it! My side-effects haven't stopped yet (which is disappointing because i really hoped my moon face would be gone for the summer) but I think they are getting a little better.

I would still take all the stupid superficial problems though and be able to walk!! I'm so much stronger than I was a few months ago! And as much as I hate the steriods, I also love them - they made me able to function independently again.

All the best with your treatment!
~Kathy

[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

[Snifhvide]

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]

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!

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]

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!

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

[Snifhvide]

Originally Posted by erinhermes

I was recently diagnosed with MG (March 6th) and underwent a thymectomy on April 22nd. Since my diagnosis, I have been on steroids (between 60-80 Mg a day) and have noticed that blood work is now a BIG ISSUE! Now for most people this isn't a big thing, but I'm EXTREMELY afraid of blood work and my veins just stop giving blood! When I do have blood work (monthly),I look like a junkie with big track marks. Has anyone else experienced this? I just don't understand why this is happening! I used to be able to have blood work done with no problems, so I'm assuming it's the steroids. I also had a PICC line put in and still experience pain/pressure at the site, and can actually FEEL the blood pumping harder at the site - it scares me a little. Any information would be great. I know steroids are a necessary evil, and I know that I'll probably be on them for at least a year, but am hoping that some of the side effects go away as my dosage is reduced.........

Steroids are both wonderful and horrible at the same time. First time I got them, I started with 120 mg. a day and had no side effects at all for 3-4 months - the doctors could hardly believe their eyes. Then suddenly in 14 days time I gained 20 kg. (44 lbs) and my head looked like a balloon. As I got further down in dosis it helped, but it only went totally away after I had weaned out of it (which took me 2 years).

Later I have had times where I have taken a smaller dose (10-15 mg). The side effects haven't been as bad then (slight weight gain, a bit moon-faced), but last time I got them (½ year ago) my emotions got totally messed up. Every night I would go into hysterics for no reason at all - I simply had no control, so I weaned out of them again. Currently I'm not taking any.
The only thing I can say about steroids when I think of my experiences is that they are absolutely unpredictable.

When it comes to blood work I haven't really thought of the steroids as having any influence. Sometimes my veins stops giving blood aswell, but that is usually when it's a not-as-skilled person (like a doctor ) that takes the blood. The nurses and lab-people are much better. I've also always been told to press really hard on the spot where the blood was taken from, right after they pull the needle out. It lessens the risk of getting huge bruises.

And on a sidenote: When I was first time admitted to the hospital for something really serious 12 years ago, I was dead scared of needles. Today I can look at it all without any problems. Trust me - you will get more and more used to it.