Steroids and side effects....
 

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.........

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

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!!

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! :eek:
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

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!

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 :D) 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. :winky:

A high dose of steroids, if your body is not using them, will cause Cushing's syndrome. With that, you will get weak bones and muscles and well as weight gain and possibly other symptoms like diabetes, high cholesterol, poor healing, depression,...
The *art* with steroids is to take just what you need. Too much - and they will destroy your body.
Too little, after you have become dependent, can cause you to have an adrenal crisis - so you must change doses slowly or risk getting very sick or dying.
I had Cushing's and now have no adrenals. I live on steroids.

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?

Eeyore... If you are taking medium acting steroids - you are simply just going on the steroids that are still there IMHO. I agree on pred that every other day is probably easier and somewhat less damaging, but you have to know how pred works and how the body normally works.
Prednisone lasts 18-36 hours.
http://www.globalrph.com/corticocalc.htm
And a normal body has a diurnal rhythm that has peaks in the morning, starts to fall in the late afternoon, with a sharp fall to near zero around midnight. Prednisone can last longer than a full peak especially if one takes more than a suppressive dose which is 5mg. However, pred is not a fast acting steroid so it does not kick in right away (hence why it is not used in emergencies for adrenal issues) so it may take 2-4 hours to start working once it is taken.

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". :p 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. :D

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 :D .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:eek: 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

I laughed when I read your first line! Thanks for that!
 

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 :D, 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!

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..........

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.

Hey there!
 

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!:D 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:)...........

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?

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

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.

Hey there!
 

Good morning! I hope you are feeling well today!:D Today is going to be a better day - I can feel it! I started on some vitamin supplements today (1500 mg. of calcium + D) and C per my hemotolagist, so I think I may feel better really soon. As for my abscesses; I had a really bad dentist who shaved my teeth down to put on crowns and killed all of them. I've had over 30 root canals in the last 10 years, so now of course I have to see a specialist and have 2 really wicked toothaches (but I'm used to them by now)..........I can sleep through most of my root canals. I jut hate being on antibiotics all the time, cuz' they make me sooooo weak. I really hope that when you go to Hopkins they give you some other alternatives, b/c you shouldn't have to put up with your neuro - he/she sounds really awful. After 4 years of IV IG, you'd think they could come up with another alternative and end your suffering - that is just morally WRONG on their part! You need to be able to get out there and be "normal" again - we all do! I was scared to death when I was told I'd have to have surgery, but from what I've read it was necessary. My neuro made me undergo another IV IG for 5 days straight before I had surgery (to make sure I wouldn't have to be intubated for too long) - I still had to for several hours after the surgery, and woke up with that damn thing in my mouth - scary - and tubes coming out of everywhere, but my blood work was slightly better right after my surgery, so who knows? Prednisone makes me hyper too, that and really moody, plus I've got all the great side effects (weight gain, moon face, acne, panic attacks, facial hair, etc.) but on the other hand I can now somewhat function, so I just take 1/2 a xanax when I take my morning dose -that way I don't fly off the handle every morning. Keep hanging in there and let me know if here is anything I can do to help:D

I can't even imaginge 1 root canal, let alone 30. I have 3 crowns already..I've fractured 3 teeth with fillings b/c I clench my teeth at nite.

My breathing is borderline today and the steriods are making me nutty, but in the scheme of things I'm doing OK ...1 day at a time