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!
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 ) 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.

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