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!

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

Take care!
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

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

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!

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

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