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.

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!

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!
Nicky

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

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!

Nicky

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!

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!

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

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

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.