Hi,

I just need a few quick questions answered. I used to be on the forum quite a bit but drifted away due to having the MG diagnosis removed.

I started florinef one week ago and the MG type symptoms that haven't been a real problem for about twelve months now have raised their ugly head. I am having full on ptosis, bilateral and unilateral, choking on liquids, neck weakness and breathing problems. I am back taking mestinon even though I have problems with it. The mestinon resolves all my issues. But I am having to take between 60mg -120mg before it makes any difference. I don't have any side effects other than stomach cramps.

For those of you who have been on steroid treatment and had an exacerbation of symptoms how quickly did these get back under control?

I spoke to my consultant today and he doesn't want me to increase the florinef just stick at 100 micro grams. He doesn't believe that the steroids are making my MG like symptoms worse - but hes a geriatric specialist not a neurologist and his knowledge of MG would fit on the back of a postage stamp.

I don't have a neurologist as neurology say theres nothing wrong with me. Due to the UK system I have no easy access to neurology unless I get so ill I am admitted to hospital. Believe me I don't want that so I am happy to treat with mestinon.

So thats my latest dilemma!

Rach

Hi Rach!

I cannot take steroids -- but, here is some info that might help explain what is going on -- problems you are having. Here is a tiny quote from a large section that you might want to read.

(page 10)

http://www.uwo.ca/cns/resident/pocke...uscular/MG.pdf

Hi Rach,
I experienced a sudden exacerbation of my MG symptoms when my prednisone was increased to 60 mg daily. The significant weakness that I felt lasted for about a week to 10 days, then gradually diminished to symptoms that were much more manageable (and a lot less scary).

Your symptoms sound severe. Don't hesitate to go into the ER, particularly with breathing difficulties. My current neuro said that she wouldn't start patients on high doses of steroids at home, specifically b/c of the risk of an MG exacerbation.

I hope your condition improves quickly.

Cate

Thank you for your replies.

I have been told that 100 micro grammes of florinef is equal to about 10mg of cortisone. However I am on the contraceptive pill cerazette which increases the potency of florinef.

Its weird as I didn't have this reaction with pred. Florinef has been prescribed to boost my blood pressure and blood volume. Not for MG as I do not have an MG diagnosis.

Thankfully I have oxygen at home so if I have problems I can dose up on mestinon and hook up the oxygen. I have a pulse ox as well plus BP monitors - my house is starting to resemble the set of ER.

I knew the reaction was transitory I just wanted a rough idea on how long it could last for. So thanks for giving me a rough idea.

At the moment any time out of bed is leading to an exacerbation of symptoms.So I am trying to have bed rest as much as possible to avoid the ptosis and shortness of breath.

Thank you for taking the time to reply - its more help than I got on a different forum!

Rach

What is the purpose of the steroids with MG anyway?
I am not sure I understand why they are prescribed for people with MG, is it inflamation of the respiratory system the drs are trying to calm down?
Just curious.
Thx
Randy

Hi

steroids are prescribed due to the fact MG is an autoimmune disease, to dampen down the immune system MG patients are given steroids. Thus the body (the immune system) stops attacking the neuro muscular junction.

In other autoimmune diseases that do include an inflammatory process such as lupus or RA, its the combined anti inflammatory effect and the immune system dampening down, is why steroids are used.

I hope this helps Smokey.

Rach

I'd like to add something here:

Florinef is a different type of steroid.. It targets water/sodium metabolism, primarily and weakly inflammation (in high doses or over longer periods of time). (unlike prednisone).

So it would not have a severe side effect profile like prednisone does.

Here is a monograph on it:
http://www.rxlist.com/florinef-drug.htm

People who have had adrenal glands removed due to tumors often take both, Florinef and Cortef.

As I stated in my first post I'm not on Florinef for MG but for my Postural Orthostatic Tachycardia - so its being used to help me retain sodium and water to increase my blood pressure and blood volume.

I am having to monitor my blood pressure whilst on it and will be having blood tests to look at electrolytes. I monitor my blood pressure anyway - but I can usually tell you what it is roughly without taking it purely by the way I feel.

Its just very odd that my MG like symptoms have increased one week after commencing treatment - ptosis, choking, breathlessness, feeling of an elephant sat on my chest, not being able to hold my head up, getting tired chewing food.

My consultant has told me that he doesn't think the steroids are causing this but hes a geriatric consultant ( not that he's old but he treats the elderly lol) not a neuro.

There is a warning on the patient information leaflet that states people with MG may have increased muscle weakness.

For the time being we are keeping to 100 micro grammes until everything has settle down.

Normally my MG symptoms raise their ugly head if I have been over doing it or if I have picked up a virus or bacterial infection. Neither of which applies to me at present. The only new thing in the mix is the florinef.

So I will just wait and see what happens.

Thanks for everyones posts.

Rach

Even though you haven't been diagnosed with MG, if you suspect you have it, the fact that the label of the Florinef says that it can cause problems in people with MG would be a HUGE danger sign to me.

I realize the health system in the UK isn't like ours is here, but I would get another opinion ASAP, and in the meantime have your doctor put you on a different steroid IMMEDIATELY. I'm not kidding - it sounds like a dangerous thing for you to be on.

I know that doctors don't want to diagnose people with MG unless they have certain "positive" indicators - the fact that I was able to tolerate Mestinon in ANY amount (plus my other symptoms) was enough for my neurologist to give me a positive Dx, even though all of the tests came back normal.

INSIST on seeing another neuro as soon as possible (yesterday isn't soon enough), and don't take "no" for an answer. You are putting your health in extreme risk. I don't mean to sound like an alarmist, but drug interactions for people who have MG are a very serious - sometimes life-threatening - deal!

Please be careful -

Just an observation....Prednisone also has a warning that it can cause muscle weakness in people with Myasthenia Gravis, but obviously that hasn't stopped the use of Prednisone in the treatment of MG. Just because something comes with the warning that it may cause problems doesn't mean it will cause problems with everyone.

In response to the original question, my understanding is that any exacerbation of MG usually shows up almost immediately and can cause weakness for the first few weeks of starting Prednisone before it evens out after that. Not sure how that translates to the type that you're taking.

One thought - muscle action is affected by electrolytes (sodium, potassium, calcium), and if you're taking the Florinef to retain sodium I wonder if that has put your electrolytes out of balance, and is contributing to the weakness (which is consistent with your comment that you will be having blood work to monitor your electrolytes).