Re: Moonface and other prednisone side-effects
 

Hey guys,

I've recently started tapering down on my prednisone from 60mgs to 50mgs per day as of Dec. the 1st. I've noticed more frequently now than before that my moonface isn't as prominent some days. In fact, today, it went down significantly, although it's still a bit swollen. I'm a bit confused about the moonface side-effect. I read that the side-effects of prednisone are lipodystrophy and in brackets beside this was written buffalo hump, moonface and fat redistribution to the trunk, with less distribution to the legs and arms. So I'm just wondering: is the moonface actually caused by fat redistribution or water retention? It seems to me that it would be water, since it goes down sometimes and this sorta seems to be related to my salt intake. Since starting the 50mgs, I've also been more conscious about how much salt I'm eating, and am eating less of it, and try to avoid it as much as possible (which is really hard, btw argh).

Has anyone been able to keep their moonface at bay with a special diet, or taking the prednisone at certain times of the day or even exercise? I walked a lot today, and took my prednisone a bit earlier than usual. I also had a plasma exchange after I took my prednisone. Maybe all these things combined kept the swelling down?

P.S. I really hate the moonface, in case you haven't noticed! lol

Ttys!
Nicky

I don't have MG but I do have MS, and I've had to take high doses of oral cortisone on many occassions to treat the sympyoms of a flare up.

During an exacerbation my usual dose is 75mgs orally per day and when my symptoms ease off, my neuro gives me a regime to taper off.

What I've noticed about my moon face is that once my taper has completely finished (so I'm totally off the cortisone), it'll take the same amount of time for my round face to disappear as from when I started the medication ...... until that final dose in the taper.

For example, if I was taking the regulated dose of cortisone for a month and I had to taper down over a month.... then it would take 2 months for my face to return to it's usual shape. Does that make sense?

Strangely enough, when I'm given my cortisone by IV infusion, my neuro gives me 1000mgs per day over 3 days, and even though the dose is much higher..... it dosn't give me the moon face side effect. Must be something to do with the shorter infusion time.

I hope I haven't confused you now. :D

Hi,

I was told the side effects from steroids can take up to two years to go.

Whilst on prednisolone I developed the Hump on the back, moonface, moustache and tummy fat.

Ive been off them 11 months and I have just a tiny hump left. The moustache got epilated off! The moonface went very quickly within a couple of months of tapering the drugs. Tummy fat going!

Love
Rach

Thanks, guys!

The nurses at the apheresis unit said the same thing- that it would take about two months after stopping the prednisone for the moonface to go away. It's just kinda interesting that sometimes the swelling goes down while I'm still at a pretty high dose. Seems like it's something that I may be able to control to some degree, just have to figure out what it is I'm doing...

Rach- I noticed that you said that the moonface started to subside during the taper...What dosage were you at when you'd say that the moonface started to really go down?

I pretty much have all of the side-effects of prednisone now. The only one that I really don't have is the weight gain. In fact, I may have lost a pound or two. Insulin resistance, crackling bones, moon face, hump, HAIR (moustache, chin hair, side burns, and hair between my actual hairline and jaw bone), I finally just resumed my period after not having it for 4-months, was having mood swings, not so much anymore (maybe 50mgs is a real turning point in terms of intensity of certain side-effects?), acne, intense pressure in my head, the whole shebang.

My neuro. wants me to get to a place where i'm at 50/0, alternate day-therapy tapering by 10mgs each month- I want to go faster! I hope that helps with the side-effects, and that by the time it's done, permanent damage hasn't occurred!:eek:

P.S. I ordered the book, 'Coping with prednisone,' and it should be here any day. I'm so glad that someone here mentioned that book as I think it might be a godsend it terms of preventing permanent damage- knowledge is power!

Thanks again, guys!:grouphug:
Nicky

Moonface and other prednisone side-effects
 

Nicky,
Thank you so much for this post!!! The timing is perfect. I can tell you I HATE prednisone more every day. I am having alot of side effects too. My latest is spasms in my sides and feet. I see my Neuro on Jan 12 and am going to talk to him about it. I also have insomnia on my Pred days, and I am definitely retaining water. I think you are onto something about it being related to salt intake. It is much worse on days when I have eaten too much salt the day before. I LOVE salty food so a low salt diet is very hard for me!!! I am feeling so down over all of this and want so badly to come off the Pred but it is the only thing that helps me have somewhat of a normal life. Does anyone know how long most people are on Pred before they start weaning them back off? I am scared I am going to be on it for a long, long time. I have been working way to much this week and it is catching up to me so I think I am starting to feel drained and depressed. I am just not sure what people are supposed to do. I can't work like I used to but if I don't then I can't make the money I need to pay bills. I am seriously considering applying for disability. Have any of you been successful in getting it the first time you applied? Hang in there Nicky!!! At least you are lowering your dose. Please keep me posted on how your symptoms do as you continue to lower your dose.
Kendra

Hi kendra
 

I'm so glad that you posted because I can relate/help you with everything you brought up!

I also have the spasms in my feet and they are brutal, let me tell you! Sometimes, I can't sleep at night because of them- I'm constantly trying to maneuver my feet to such an angle so as to stop them, but they just end up twisting back inwards in contortions that are really painful. I don't have them everyday, so again, it must be something I'm eating or not eating...I think it's potassium, or lack of it. I'm low on it. During my last plasma exchanges, they checked it out, and it was low every time since I've started taking the prednisone (got a full synopsis of my history). So I guess we gotta increase our potassium intake- I hear cantaloupes are full of it, and bananas of course (but then you gotta be aware of the sugar content, so that's another one-argh).

The salt thing is definately bad. The worst thing about it is that I started to crave salt like crazy since starting the prednisone, whereas before, I didn't feel like eating it so much-weird! One time, I devoured an entire bag of Hostess potato chips, and Lord, I payed. I felt almost instant pressure in my face, and I got dizzy. I think that it increased my BP big time. Who knew an innocent bag of deliciousness with such friendly-looking mascots on the bag could be like a grenade! lol..Suffice it to say, no more chips. It's still very difficult to control the salt, though, even when preparing your own meals from scratch. I find breakfast easy (scrambled, unsalted eggs, whole grain toast, tomatoes, milk and a banana and maybe cereal- no salt added to anything), but dinner is hard because I love meat, and it's got so much salt.

I completely empathize with your feelings of sadness/frustration. The prednisone doesn't even control my symptoms enough for it to be really worth it (in light of the LT side-effects of the treatment). I still have to have plasma exchanges every once in a while (which work spectacularly, much better than they did before, so I guess the prednisone helps a touch). So I feel like I've bargained for new diseases in order to take the edge off of the MG. Now I'm stuck with the scary side-effects because I can't just come off of it- I really hate that my body is dependant on this poison, but am thankful that it helps a teensy bit. My neuro. now wants me to start Imuran, and i'm putting it off (being a bad patient). I'm really scared to take combo. immunosuppressive therapy because there's a risk of cancer and life-threatening infections. Plus the side-effects of that one are pretty bad too. It's really hard to know what to do in this situation. I just think that it's dangerous to still be at a relatively high dose of prednisone and to start a high dose of another immunosuppresive agent simultaneously. It might be rare, but I've read that this combo. can cause PML, and it scares me a lot. *sigh*. I'm sitting on this dilemma, and trying to work through what I should do.

You asked about how long it takes to be weaned off the prednisone. My impression is that, for MG at least, when the side-effects get to be too much, and/or another agent is added, and/or improvement is seen, the weaning starts. I think that I remember you mentioning that your MG is sorta well-controlled now with the pred. and mestinon. Maybe you can start weaning now, or in the near future.

About work- I had to apply for LTD. The continuing speech/breathing issues along with the prednisone side-effects are just too much for me right now. I was approved, thank God. I've read about others taking prednisone for other illnesses and being approved for disability based on the side-effects of the prednisone alone. I mean think about it, we basically have Cushing's disease- this is a disability in of itself, you know? Every organ in the body is affected. It's difficult. I hope that I'm not being negative, or a 'downer,' it's just that it is what it is, at least for now. I have so much hope for the future, but right now I feel that I'm still transitioning- getting used to the new me, limitations. I hope that something works well soon.

About the side-effects while tapering- I seriously think that 50mgs is a magic number for me, at least in terms of the moon face. Again, it could also be the reduction in salt, but my face is actually normal right now, and let me tell you that it was gigantic before. I sorta don't feel as moody either, or 'foggy.' My cognitive abilities are still sorta lax, but I feel like they're improving somewhat. It's funny because my dad was at a very high dose for his illness too a while back. When he got down to 40mgs, his moonface completely disappeared, which is very odd 'cause 40mgs is still a high dose. Who knows!

Anyway, know that you're not alone, and thanks for writing. I hope that you can start weaning very soon and that the MG remains at bay!:hug:

Nicky

Moonface and other prednisone side-effects
 

Oh I totally agree the spasms are brutal!!! I get them in my feet more in the evening. My Dr. started me on Mirapex for RLS so that may be why they don't bother me too bad when I'm sleeping. The ones in my sides are killer!!! It almost takes my breath away for a second until I stand up and try and stretch it out. I was getting worried that my spleen was enlarging from a blood disease I have but after looking around on the internet I found what you did about it being related to low potassium. I am faithfully eating a banana every day now. I had been doing that until a couple of weeks ago and I don't know if it is just a coincidence but looking back I think that is when alot of my problems started.

I have always been a salt person but it is definitely worse now. OMG...it is crazy that potato chips can do so much damage!!! I had to laugh at the picture you painted of this.

Nicky I feel for you not seeing much improvement from the Pred. The Mestinon is like that for me but luckily the Pred has made a world of difference in my muscle weakness. Alot of days I feel really good but then times like the last week or two when I work too much and still try to do stuff at home I realize i am still sick. I also agree with being fearful of 2 immuno suppresants at the same time. One is scary enough but two? So far my Dr. hasn't mentioned Imuran or Cellcept, I guess because I've had pretty good luck with the Pred. What does PML stand for? I'm sure it's something totally obvious and it's just not clicking. It is good that your taking time to think through your options. It just seems like we trade one problem for another with MG. It is sooo depressing.

Oh gosh I am glad to hear they start weaning you after symptoms improve. Maybe here before long the Dr. will start tapering me down a little. It is ridiculous but that scares me too because I worry I will start feeling really bad again. I guess I need to try and be more positive about it all.

Congratulations on the LTD!!! That must be a huge relief. I made my mind up this morning that I am going to apply and see what happens. I have another really busy day of working and was in tears this morning thinking I would never make it through. I have picked up a cold that I am affraid is turning into a sinus infection. I just thought to myself this is ridiculous to feel so bad and still keep pushing. You are right that this disease effects everything and it is just too hard to work and still have any energy left to do much else. I am hopeful that I'll get approved but know ALOT of people get turned down the first time. I have MG as well as a blood disorder and am also on the Pred so maybe the combo will be in my favor. I have had the blood disease for about 7 years and have always picked up colds, sinus infections, respiratory things due to a poor immune system. That is why I was so scared to take the Pred because it suppresses your immune system all together.

Nicky thanks so much for this. I really just needed to vent and it always helps to get it out! Hopefully 2010 will bring remission for all of us.
Kendra



QUOTE=Nicknerd;605527]I'm so glad that you posted because I can relate/help you with everything you brought up!

I also have the spasms in my feet and they are brutal, let me tell you! Sometimes, I can't sleep at night because of them- I'm constantly trying to maneuver my feet to such an angle so as to stop them, but they just end up twisting back inwards in contortions that are really painful. I don't have them everyday, so again, it must be something I'm eating or not eating...I think it's potassium, or lack of it. I'm low on it. During my last plasma exchanges, they checked it out, and it was low every time since I've started taking the prednisone (got a full synopsis of my history). So I guess we gotta increase our potassium intake- I hear cantaloupes are full of it, and bananas of course (but then you gotta be aware of the sugar content, so that's another one-argh).

The salt thing is definately bad. The worst thing about it is that I started to crave salt like crazy since starting the prednisone, whereas before, I didn't feel like eating it so much-weird! One time, I devoured an entire bag of Hostess potato chips, and Lord, I payed. I felt almost instant pressure in my face, and I got dizzy. I think that it increased my BP big time. Who knew an innocent bag of deliciousness with such friendly-looking mascots on the bag could be like a grenade! lol..Suffice it to say, no more chips. It's still very difficult to control the salt, though, even when preparing your own meals from scratch. I find breakfast easy (scrambled, unsalted eggs, whole grain toast, tomatoes, milk and a banana and maybe cereal- no salt added to anything), but dinner is hard because I love meat, and it's got so much salt.

I completely empathize with your feelings of sadness/frustration. The prednisone doesn't even control my symptoms enough for it to be really worth it (in light of the LT side-effects of the treatment). I still have to have plasma exchanges every once in a while (which work spectacularly, much better than they did before, so I guess the prednisone helps a touch). So I feel like I've bargained for new diseases in order to take the edge off of the MG. Now I'm stuck with the scary side-effects because I can't just come off of it- I really hate that my body is dependant on this poison, but am thankful that it helps a teensy bit. My neuro. now wants me to start Imuran, and i'm putting it off (being a bad patient). I'm really scared to take combo. immunosuppressive therapy because there's a risk of cancer and life-threatening infections. Plus the side-effects of that one are pretty bad too. It's really hard to know what to do in this situation. I just think that it's dangerous to still be at a relatively high dose of prednisone and to start a high dose of another immunosuppresive agent simultaneously. It might be rare, but I've read that this combo. can cause PML, and it scares me a lot. *sigh*. I'm sitting on this dilemma, and trying to work through what I should do.

You asked about how long it takes to be weaned off the prednisone. My impression is that, for MG at least, when the side-effects get to be too much, and/or another agent is added, and/or improvement is seen, the weaning starts. I think that I remember you mentioning that your MG is sorta well-controlled now with the pred. and mestinon. Maybe you can start weaning now, or in the near future.

About work- I had to apply for LTD. The continuing speech/breathing issues along with the prednisone side-effects are just too much for me right now. I was approved, thank God. I've read about others taking prednisone for other illnesses and being approved for disability based on the side-effects of the prednisone alone. I mean think about it, we basically have Cushing's disease- this is a disability in of itself, you know? Every organ in the body is affected. It's difficult. I hope that I'm not being negative, or a 'downer,' it's just that it is what it is, at least for now. I have so much hope for the future, but right now I feel that I'm still transitioning- getting used to the new me, limitations. I hope that something works well soon.

About the side-effects while tapering- I seriously think that 50mgs is a magic number for me, at least in terms of the moon face. Again, it could also be the reduction in salt, but my face is actually normal right now, and let me tell you that it was gigantic before. I sorta don't feel as moody either, or 'foggy.' My cognitive abilities are still sorta lax, but I feel like they're improving somewhat. It's funny because my dad was at a very high dose for his illness too a while back. When he got down to 40mgs, his moonface completely disappeared, which is very odd 'cause 40mgs is still a high dose. Who knows!

Anyway, know that you're not alone, and thanks for writing. I hope that you can start weaning very soon and that the MG remains at bay!:hug:

Nicky[/QUOTE]

Hi Kendra,

I was reading through some old posts and I came across one re. antidepressants and MG. I noticed that you are taking Zoloft. I'm not sure if this fits the same as tricyclic antidepressants, but apparently, prednisone and at least tricyclic antidepressants are sorta no good together, but again, I'm not sure how it would work with SSRIs. This sorta ties in with the issues you were having with insomnia. I came across an interesting article about prednisone and psychosis. I know that you're not experiencing psychosis, but it did mention problems with insomnia and how administering tricyclic antidepressants to those people worsened their symptoms. It's sorta far-fetched, but maybe the anti-depressant is making your insomnia worse? Here's the link, if you wanna check it out. Again, it's kinda far-fetched because it doesn't really mention SSRIs and deals more with psychosis issues rather than insomnia as its own entity, but here it is anyway...

http://www.drrichardhall.com/steroid.htm

Sorry you've got the blood disorder to contend with too, but I'm glad that it's not your spleen causing the problems. I feel pretty sure it's the prednisone since I've got the same problems you're describing. I'm considering asking my doc. about a potassium supplement, but I hear it can be dangerous. I'll see what he says.

I'm really glad to hear that the prednisone is working well for you even with the bad side-effects. He might want you to stay on it for a little while longer, just to maybe make the good effects 'stick.' But before you know it, I think you can start weaning down. That'll be an excellent day! :D

PML stands for progressive multifocal leukoencephalopathy (something like that). It's very rare. It's a reactivation of the JC virus that we all get as youngsters, and is pretty benign, but when the immune system is very weak, it is re-awakened and able to cross the blood brain barrier and is almost always fatal. It can be reactivated in people with AIDS, or those who are very immunocompromised for other reasons. It has occurred with certain types of immunosuppressants (a lot of which have been taken off the market because of it), or combination immunosuppression (like pred. + cellcept/imuran, etc.). I think that it's pretty uncommon, but I sorta worry about it because my dosage of prednisone is high and I read that people who got it were also at high doses of prednisone plus another immunosuppresant as well as plasmapheresis (all of which I'll prolly be getting if things don't improve with my current treatments). The idea of it just freaks me right out, not to mention that fact that the swine flu is still floating around and I'd basically be trapped in the house on these treatments. I don't know if I'm just worrying too much, or if my fears are legitimate. I have no idea what the stats are for things like this, and I guess that's why I feel unsure. *sigh*

Kendra...The blood disorder that you have, is it hypogammaglobuneria? If it's private, don't worry about answering...It's interesting, though...For some reason people with this disorder tend to get MG, but especially when a thymoma is involved. I'm pretty sure that you didn't have a thymoma (from what I remember), but when there is a thymoma with this disorder, it's called Good's syndrome, but many other people have developed MG after being diagnosed with the low Igs syndrome without having a thymoma.

I hope that you get approved for LTD. I know the feeling of being desperate for a good rest- our bodies are really being pushed to the limits with the illness alone. Throw in another illness, plus the stresses of work, and all the side-effects of treatments, plus the time spent seeing the doc./getting treatments, and it can be nearly impossible!

I think that 2010 is going to be a better year for all of us too! Sharing info. on this site, rest, effective treatments and better health are on the way! :)

Nicky

Hi Nicky
 

Sorry I didn't reply yesterday, Ive been having a bit of a time of it.

Ive had a chest infection since 17th December. This week I was given a second lot of antibiotics, a type which should be used with caution in MG patients. I only realised this once I had taken 4 of them and the mestinon stopped working and I was getting very weak very quickly. It was very scary and I ended up seeing an emergency GP. The emergency GP gave me Augementin, which was fine until yesterday when I suddenly started having an allergic reaction to penicillin. I have never had a problem with penicillin before. My face and mouth swelled and my face, back and neck were covered in a red blotchy rash which was a tad uncomfortable! So please accept my apologies in not replying earlier!

Ok so back to your thread. I went up to 60mg of Pred, it was only when I got to around 20mg that the moonface started to subside. Under 20mg it really disappeared very quickly.

I hope that you find the side effects of Pred disappear quickly.

Love
Rach:hug:

augmentin
 

I also have had a chest infection since early December 2 courses of augmentin and now one of distaclorcontaining cefaclor 3.75mg.
still feel it is not clearing.
GP says there is also alot of viral chest infection about which antibiotics cannot help.

That's okay, Rach! It sounds like you had quite a rough time- that's odd that you had an allergic reaction to th penicillin. Are you feeling better now? Do you still have the infection? I've had a cough too, a dry one, which is really annoying...I hope that the infection clears asap!:hug:

Thanks for the info. re. the prednisone- I can't wait to be at 20mgs!

Take care!
Nicky

Hi Nicky
 

Still feeling a bit rough and having an MG flare up now, so mestinon lasting about 2 hours. Yeah Ive got the dry cough too with a tickly throat. The blotchy rash has gone now so thats good!

Love
Rach

hi nicky
 

well i was on 60mg preds every other day after a few months the preds were working well thou side effects were bad then my neuro put me on imuran as well that made me unwell but i hoped it would inprove but it didnt so then the plan was to stop the imuran and reduce the preds which now ive stoped for about 5 weeks and im able to cope with the weaknest and at last my face is starting to look like it did which is great i think my body misses the preds i still get swollen wrists and feet and my tummy is still big but hope it won't take 2 years for that to go so hope your moonface goes soon and good luck with the reduction of preds
alan

Thank you, Allan. That is so great to hear that you are off the meds. and are just experiencing a bit of weakness.

I'm glad to hear that the moonface is going away- I'm sure that the other side-effects will also disappear quickly (lipodystrophy), especially now that you're feeling stronger. This is terrific news!

So you're completely off of the prednisone now? How long were you on it for?

ttys!
Nicky

hi nicky
ive been on preds for a year i started just as my MG was becomming bad i was having problems breathing and swallowing it took time before their was a inprovement but also the side effects were not nice i started to have eye problems and had a start of gloucoma i'm sure that comming off the preds will
in prove my eye problem once the weight starts to come off i'm hoping to travel to Australia to see my daughter thats my goal this year as she's having a baby soon . and yes no drugs at all i'm waiting to see my neuro to see what he plans
alan

Moonface and other prednisone side-effects
 

Hi Nicky,
Sorry it has taken me so long to get back to you but I have been really sick. Today is the first day since last Thur. I have felt like doing much.

Yes I am on Zoloft. I take 50 mg daily. It is funny you mentioned that because I too have wondered if there is a connection but haven't been able to find anything on the internet to confirm it. I will check out the link. Thanks!!!

I am so anxiou for the day I can start weaning off the pred. I have been catching up and noticed Alan said he is now off of it and his side effects are getting better. YEAH!!! It is such a strange drug because it has made me feel so much better but then on the other hand I have all these side effects and am seriously concerned right now with my immune system being suppressed and picking up everything I'm exposed to. I went to see my Int. Med Dr yesterday and she started me on an antibiotic. She didn't want to send me for a chest x-ray because I am scheduled for my follow up chest scan on Thur for the Interstitial Lung Disease and she said if it was bronchitis it would show up in the scan.

Nicky your concerns are totally justified!!! It is extremely scary to deal with this disease plus all the risks of the meds to treat it. I have days when I feel like I am falling apaprt. It seems like one problem has led to another. I am still wondering if there is a connection between the MG and the lung disease. My blood is disease is Thrombocytosis. It is too many platelets. I take meds for that too and it is very well controlled right now. I have some kind of family history of blood disorders. My mom had a blood disease of the red cells, Polycycthemia which turned into Milofibrosis. She died from a blood clot after having her spleen removed. I'm sure that is why the cramps in my sides were freaking me out and making me think my spleen was enlarging. My moms dad had a disease of the white blood cells. You are right...I didn't have a thymoma. Thanks again Nicky for all the info. How are you feeling? Yes 2010 will hopefully be a good year. If nothing else knowing we can come here to vent helps so much.
Kendra

Nicky, I was overwhelmed with all the writing so I decided not to read but skim it all.

I'm sorry you are having so many problems on Pred. It helps but is not a "nice" drug. When I was on it, I got bad bradycardia, puffiness like crazy, craving for sodium like you, was veraciously hungry and got a staph infection within ten days. And that was after short term use, I can't imagine doing it on a long term basis.

I hope you can figure out a way to lessen the side effects.

Have you gotten re-tested for celiac? You get enough calcium/vit. D, right?

Good health should not include these trade-offs.

Annie

Hi Kendra,

Sorry it took so long to reply!

Are you feeling better? I'm sorry that you were sick- I hate getting sick, like anyone, but it can be downright scary with the MG in the mix nowadays!

I'm glad that you don't have hypogammaglobuneria (sp.?), but sorry that you have high platelets...There have been others here who have had the same disorder with the platelets- I remember reading about it...I wonder if there's a connection...

I'm very sorry about your mom too- I can understand yours fears about your spleen in light of the cramps and the history...

I sometimes wonder about the depression/anxiety thing with the illness. It's like, what came first? Sometimes I feel that our minds detect disarray in our bodies, which might result in some at least minute level of low-energy, general sickness, and this makes us depressed/anxious, but we don't really compute an organic cause, we just register it in terms that can be understood by both us and others, like 'depression' and 'anxiety.'

I do believe that these things can exist on their own, or that they don't have to necessarilly reflect some underlying illnesss, but I honestly feel that illness creeps up slowly sometimes and it's trickling-down effect can manifest as symptoms of symptoms, so-to-speak. Like a tree with branches branching off to other branches, and so on.

But anyway, back to the prednisone. Yes, it sucks! I started exercising last week because I figure I gotta do what I can to combat the osteoporosis. I started doing some yoga, jumping jacks (I know, not much, but it helps!), dancing (lol to 'so you think you can dance') and I feel better- stronger, but achy. The osteoporosis is one side-effect I feel is a real threat as my joints are making sounds when I move them (like my shoulders and hips).

I hope that your scan comes out clear, and that you continue to feel better, minus the trade-offs, as Annie put it perfectly!:hug:

Nicky

Hey Annie,

Yup...I take 1500 mgs of calcium and 1000 mcg of vitamin D3...I find it difficult timing the supplements with the mestinon, though...It's so annoying because the calcium can't be taken within 3-hours of any other meds. because they compete for absorption...I usually take it right before bed, but I also take mestinon SR, so this often results in morning weakness...argh!

I recently mentioned getting tested for Celiac's with the doc. but he agreed that the prednisone would prolly make the test negative, so I'm gonna wait until I'm off of it to be tested..I'm not really having any GI issues other than acid reflux and some constipation here and there...

I can't believe you got a staph infection! That must have been so scary- I"m glad that you got through it and were able to get of off the prednisone...Were you on the prednisone for MG?

Nicky

pred changes the sodium /potassium balance and
 

I have found using a potassium supplement from the vitamin store cured the spasms in my hands and feet.:hug:

PMC,

What dosage of potassium do you take? Did the doc. say of this is safe?

P.S. Did it help the moonface at all?

one tablet 99mg per day
 

My brother in boston who was home for the new year uses it because his blood pressure medicine also upsets the pott/sodium balance.
I have such a wonderful overwieght mccann moonface its hard to tell

Moonface and other prednisone side-effects
 

Hi again Nicky,
I had been feeling better but over the weekend started feeling sick again. I have 2 days worth of antibiotics left which my neuro said is not going to do it. He told e to go back and see my Int. Med Dr. again. It is really kind of scary. I worry that I am never going to get well!!! I have bronchitis and a sinus infection and I just can't seem to kick it. Hopefully I can get a stronger antibiotic this time and that will take care of it.

You have heard of others having high platelets and MG? Wow that makes me wonder too if there is a connection?

I know you are right about our bodies detecting something being off even before we know it. When I first started having MG symptoms I swore I felt bad because I was under so much stress. I honestly don't know when I would have figured out it was something much more serious if the ptosis hadn't of started.

I worry about Osteoporosis too. I take 1800 mg of calcium daily but take 600 mg am and 1200 pm. I read what you wrote about it not being fully absorbed when taken with other meds. I have been doing that!!! I guess I need to figure out another time of day to take it. Gosh I hope all this time I haven't been not absorbing it. I'm so glad you posted that.
Kendra

Kendra, Does your Calcium have vit. D included? Pat

Moonface and other prednisone side-effects
 

Pat,
Yes it does have vit. D included.
Kendra

calcium in liquid form
 

My 93 year old mum always has problems with taking her calcium so recently got GP to prescribe sachets of calcium which can be dissolved in water and i am assuming would be absorbed better.:grouphug:

response to prednisone
 

Hi Nickey,

I went through the same exact situation in 2000. I was on 80 milligrams a day and 100 milligrams of cytoxan for a tumor in my head. The moonface will only lesson as you come off the prednisone. Once you are totally off it, in time you will lose the hump oin you neck and the water retention will go away, eventually. while ur still on the pred try to eat a raw diet and veggies and greens. i know thats aweful advice but there is nothing else u can do. I totally know how aweful the side affects of pred are....but the drug does work. the walking will help but really eating the greens and fruit is a win win because it is putting all the healthy stuff back ur body....and ur body needs it since the pred is working on what it needs to buy it is depleating ur body of all the healthy vitamins. good luck!

Thanks for posting this, Kiwiwell!

I was just feeling so down because my cousin posted some pics. from Christmas on Facebook (I told him to not tag anyones with me in them...I know, it's vain and rediculous)...Anyway, he forgot, and tagged me...I look like I weigh 1000 lbs based on my mug, but then when you see my body, it's so much smaller- I just look flat-out weird...

But then I started to think, well, people should know what I look like now and whatever, it doesn't really matter if my head's enormous...There are so many worse things out there, a temporarilly ginormous head isn't the end of the world, although it does mean that I have to purchase even larger hats to offset the head, and sombreros aren't easy to come by...Plus, if people don't like it, they can kiss. lol

I'm sorry about the tumour- is it gone now? Are you still taking the same meds.? It's funny that you mention the raw veggies, because I love eating them- I crave the crunch and juiciness of carrots and celery and so on...

Thanks for the advice and for reaching out with the very helpful info.!:hug:

Nicky

Kendra,

Bronchitis sucks- are they sure it's bacterial? It might be from a virus, or smoking...I remember last year after I had stopped smoking for a month, I started again, and got a wicked case of bronchitis, but it was from smoking I think, as I didn't have a fever, just a lot of phlegm and aching and such...I stopped smoking again, and it went away within a few days...It could have been a combo. of a virus and smoking, though...

It would be rough to have to deal with that while being on prednisone...i have a really bad cough too often, with lots of phlegm, but it's never yellow, always white, so I'm not sure what's causing it...it might be the mestinon as it increases secretions throughout the body...

I'm pretty sure, but not positive, that Erin has high platelets...I remember her mentioning that before...If I'm wrong, and you read this, Erin, let me know! :o and then I remember someone else saying that they also had this problem, but I think that it was someone from a long time ago...Something I came across while going through old postings...

About the calcium and it competing for absorption...As far as I know, it always wins in the competition lol...SO you prolly have been getting your calcium all this time, but the other meds. may not have been absorbed as well...Certain types of antibiotics are similar...They can't be taken with food or other medicines, so check those out too...Boy, it's hard when you have to take a medicine every 3-hours, eh? Mestinon is a saviour but it's also a diva!:wink:

:hug:
Nicky

Nicky, When I am having terrible side effects from Mestinon, I call it a B****, but Diva has a certain flare to it! lol Thanks for the chuckle!

Kendra, My cousin takes Calcium + D as do I and bought this huge jug of I think 600 tablets at such a great price. When she was about half way through it, I was visiting her and noticed there was no D on the label! So all this time she was only getting calcium, and from what I've been told without the D doesn't do much. She had to buy a bottle of D to take with the rest. I read somewhere that the majority of women do buy only Calcium. Didn't mean to be a mama hen! I hope you feel better soon.

Hugs,
Pat

In 2003 I had high platelets...but not enough to be a problem according to my doctor, just something to keep an eye on. I haven't had them tested since so I don't know if they are still high. I wonder too if there is a connection.

Moonface and other prednisone side-effects
 

Nicky,
First of all I laughed out loud at your comment about your ginormous head!!! I sooo know the feeling of being vain about all these side effects!!!

The Dr wasn't sure it was bacterial. She said since I was scheduled for my repeat chest scan 2 days later it would show up in that but we ended up having a major snowstorm and I had to reschedule. My Neuro thinks I am just having trouble kicking it because of the pred. My immune system is so supressed it is having a hard time fighting off the infection. I KNOW smoking doesn't help. I have a RX for Chantix but it is $156. for a 28 supply and insurance doesn't cover any of it. I am hoping to get that filled here in the next week or 2.

I think I remember Erin saying something about high platelets too now that you mention it.

Yes taking meds every 3 hours stinks!!! I never dreamed I would have to take so many different meds. Sometimes I wonder if part ofthe reason I feel so bad is from everything my body is trying to absorb.
Kendra

Moonface and other prednisone side-effects
 

Pat,
I appreciate the info and didn't think you were being a mother hen at all. I always appreciate the input.:hug:
Kendra

Moonface and other prednisone side-effects
 

DesertFlower,
Have you thought about going in to see if they are still high? If you do please let us know. It is strange that there are several of us who have high platelets!
Kendra

It's okay, Kendra...I was trying to be a bit funny about the 'ginormous' head thing...It makes me feel better to laugh about it...Actually, when I saw my pics. on facebook, I was LOLing- big time...My mom's like, 'you shouldn't be so critical of yourself!' But it made me feel better too see it as a temporary, humourous thing...hehe

Oh no! I don't want to be a downer, but I don't know about the Chantix...My doc. suggested this to me before too, but when I read about the side-effects people were experiencing, I decided against it...They might be increased with the pred. and an SSRI too because it is a type of anti-depressant as well...But that's just me, and I tend to get worried about such things...But it might be totally fine and work great for you, which would be excellent!

Moonface and other prednisone side-effects
 

Nicky,
You are not a downer at all!!! I talked with the Dr about the side effects and she checked everything out as far as interactions with other meds and the MG. I gave it some serious thought and decided to take my chances. I just don't think I can quit without something like this. I am usually such a strong person who has the will power to do anything but these d*** cigarettes have won everytime in the past. It has really gotten to a point where I fear if I don't quit I am going to die. My breathing is so labored at times and I feel short of breath and my heart races. Whether the ILD is smoking related or not I need to give them up in the hopes these issues will get better. I haven't fill the rx yet but will let you know if I have success with it.
Kendra

Kendra,

My dad smoked and had a hard time quitting, he finally switched to some herbs. He said it worked great for him. He drinks teas and uses herbal chewing tobacco now. He said that the craving for nicotine never goes away but that the herbs satisfy the cravings.

Today I saw an article on these herbal substitutions and thought you might be interested. Be careful since some of these herbs have side effects that might be bad for MG.

http://davesgarden.com/guides/articles/view/2773/

I was looking for teas that might help my possible chest cold. I can't figure out if I am sick or not. My chest area muscles are so tight I feel like I have bruised ribs. I do have a slight cough so I though some tea would help.

I hope your bronchitis has gotten bettter.

I am curious about the platelet thing. My dad's family has a history of blood problems...and my grampa died from a blood clot in his knee (when I was a teenager).

Moonface and other prednisone side-effects
 

DesertFlower,
I will check this out. I believe your dad is right that the craving never goes away. My dad quit about 25 years ago and told me that when he sees someone smoking it still makes him want one. I would be totally open to using herbs. I'll be sure and check them out first to make sure they won't interact with the MG.

Hopefully you're not getting sick. If you're like I am you kind of feel like something may be coming on but you're not certain until you have clear cut symptoms. I know it is worrisome to not know if you have overdone it and are dealing with an MG flare up or if you have picked something up. I did finally get over my bronchitis and sinus infection. It made me sooo sick that I couldn't hardly do anything for about 10 days. I definitely learned my lesson about working more than I can now handle.

I am curious about the platelet issue too. I have never been able to find anything that shows a connection between high platelets and MG but I need to spend some more time researching that. If I find anything I'll let you know. Thanks again for the link!!!
Kendra