• Steroid Alternatives

    Posted by barry-c on October 23, 2022 at 10:52 am

    My neurologist (and I) would like to get me off prednisone, currently at 12MG a day, which seems as low as I can go without some of my symptoms starting to edge back in, mostly vision.  She wants me to see a muscle specialist, not anyone associated with MG at all, to explore other medicines.  I’m leery, at this point going to pass, because I’ve developed a pretty deep disrespect for the medical community.  I diagnosed MG myself, after specialists looking at completely unrelated conditions came up with nothing, and even suggested the anti-binding blood work; otherwise I might still be traveling from doctor to doctor.

    My concern is any specialist I’ve encountered turns you into a lab experiment and I’m not looking to start any obscure medicines that aren’t targeted toward MG.  But I thought I’d throw it out here – has anyone had success with non-steroid and non-MG medicines and working with non-neurologists, to get off prednisone?

    kelly-criezis replied 1 year, 3 months ago 24 Members · 30 Replies
  • 30 Replies
  • rob

    Member
    October 26, 2022 at 2:25 pm

    I am interested for opinions as well. Started steroids in July increasing dose. Currently coming down from 50mg of prednisolone, which has given me diabetes, muscle wasting and low proteins, with no effect on my myasthenia. My neurologist has recommended azathioprine or mycophenolate as steroid sparing agents but I want to come off steroids completely.

    Happy Halloween

    • lisa-michele-hall

      Member
      November 4, 2022 at 6:20 pm

      I was on steroids and was able to wean off slowly w/ neurologist.  I was put on IVIG for approx. 8 months…I did have some side effects but I was able to tolerate it better than steroids.  I am now trying Vyvgart for 4 weeks then will see doc in January.  Of course I was off IVIG for a month or more before I started the Vyvgart.  I am having faith this will help my extreme leg weakness and pain.  I hope this helps I know the above is not for everybody.  At this point my eyes are not so bad it’s my leg weakness and pain.  I know you need to check with your doctor.

      Lisa

    • linda-g

      Member
      November 19, 2022 at 5:00 pm

      Hi Barry, I am writing from the Uk.  I think you definitely need a Neurologist with experience of MG  and/or an  MG specialist, and maybe get 2 opinions if you can,  and research via google a little so you have an idea of what the immune suppressant drugs do, though they all have similar side affects. Many medical practitioners are  still not fully aware of MG and its idiosyncrasies as it is deemed rare.  I went into MG crisis following swine flu in 2009/10  and  then 10 days in ITU and ventilator and then could not swallow for 18 months. I had been diagnosed with MG  9 months earlier , but I had diagnosed it myself before going to the GP following a google search of my symptoms of some years that had got worse.  The GP seemed unconvinced when I asked for the relevant blood test but it came back positive. Before I caught swine flu I went to the GP  to ask for  sick note for a month  as I had a relapse of swallowing and slurring of speech which was slowly  improving  and was trying  to get a job. He refused.  So I understand your distrust. Later I got a live in job  and explained  the situation to them but within  3 months of starting  the job my symptoms increased then I caught the swine flu.  // The problem with MG  is partly due to its rarity and there is no standard treatment that will always work for everyone.  After swine flu they put me on high dose steroids of 60mg and they said I would see a result in 14 days. I am not sure why they said this as steroids and  many steroid sparing agents take sometimes take 3 months at least to get the full affect with some conditions. This made me think the  steroids were not working after 4 weeks and I asked to lower the dose as I thought they were making me worse.  I discharged myself after 2 months  and moved to  stay with a friend  in London. I  could not eat enough and was in hospital again and was having 60mg Prednisolone daily  this time, and a year later  had my thymus out. Due to the extended period on steroids  (6 months) I finally could eat.   However, everytime the steroids went down to 20mg I would start to relapse. After 3 years I finally agreed to Azathioprine 100 mg daily which again can take  6 months to a year to  work and  steroids were  gradually reduced to 5mg daily.    I then stabilised for some years until I had Renal Nephrotic  Syndrome Minimal change disease and they put the steroids up to 6omg again which rectified the renal problem (water retention at increasingly dangerous levels).  After a year the steroids were down to 5mg again and the renal condition flared up again. So up went the steroids to 6omg. The renal condition is usually only  present in children, and in my research it is advised that if in an adult then to consider  MG or other conditions.  So now,  the Nephrologist is suggesting I change to Tacrolimos as this will control the MG as well as the Renal condition and also stop the skin cancers  which Azathioprine  is renowned for. I have had 2, one on my nose and 1 under my eye. But  I have a friend on the same drug  for years for renal transplant,  and has  had these cancers for years  and they just keep removing them ( and her sister also). I also have  a  very  low white  blood cells count due to the Azathioprine. So understand their reason for changing the medication, but I do not see any mention of Tacrolimus on the Myaware site or generally in the UK, though it was developed in Japan and they seem to use it as the first choice drug MG in Japan. There is  a little research on it but not that much, though deemed  perhaps an increasingly  safe alternative for MG, but as far as I can see it looks like Steroids may still be needed. My neurologist has agreed to the change of medication but neither he nor the nephrologist   can guarantee I will not still have to take steroids  still, or that the Tacrolimos  will  control the  MG. Which means I might go into a crisis again, which I am always fearful I will not recover from properly, as drugs do sometimes stop working  I hear. I still have to make a decision by  April 23 maybe, but I checked with the dermatologist and she says they always default to controlling the primary medical condition, i.e. the myasthenia, and that they can control the cancers, and the rheumatologist said the same about controlling the damage to the bones that steroids do, they give me zolondronic acid IV annually for a couple of years when needed. But all drugs have their side affects and we do not know what will work for those with MG (or anyone really) until we try them. If you have not tried Azathioprine before it is a long standing tried and tested drug but needs 6 to 12 months before it works, 3 months might be ok.  The only reason I have not come off steroids is because the renal condition flares up,but you may not have that problem, it is quite unusual and not necessarily related to MG. You also may not have the skin cancer side affect. But most of these immune suppressant drugs all have similar side affects, which is another reason why I am reluctant to change mine as the new drug may bring the same or worse side affect. I am stable and functioning and very wary of changing, as there are no guarantees and it is I that must suffer, and also to make the decision to an extent. With MG and many conditions, we are always choosing between “the devil and the deep blue sea” there are no easy choices, and as we get older (I am 67) I  feel I cannot expect perfection in my health whereas medical staff may feel obliged by medical  law or  morally to try and  improve the situation, but perhaps there is a point when we patient has to decide  “this far and no further”. I believe 7mg of steroids is what our body produces naturally  but I think there has been recent research that has said that even small dose of steroids i.e 5mg or maybe 12mg  will have its significant  affect over time.  I also have had 2 cataracts due to steroids. It may depend how old you are also as to whether you want to risk staying on 12mg as I think 7mg used be  the aim at one time.  I would ONLY  speak with Neurologist with some experience of MG and/or a MG specialist with regard to your treatment. When I  saw my first consultant he said MG needs to be treated with respect, and it does.  I did not dream in a million years I would end up on a ventilator  3 times and unable to swallow for 18 months.  Now I am very careful  of the medications I take, that I do not go where there is obvious infection risk,  and whether I now do change my staple MG medication that is controlling the MG, and maybe I have been luckier than some, having read comments on this thread. Maybe try and speak with 2 consultants, google the drugs they suggest, and then go with your gut feeling. Maybe you decide to stay with 12mg steroids, but that does still have risks, for diabetes as well. Its always a dilemma. Incidentally, I have also had plasma exchange and IVIg several times with no affect, and mestinon when in my first crisis also with no affect. When in ITU  or in hospital on 3   different occasions they gave me neostigmine  IV which gave immediate relief of severe and dangerous  symptoms for about 2 hours, which on the last visit to ITU they gave me this, and then they  gave me 60mg  mestion (via naso gastric tube) ever 3 hours and this actually avoided my having to me intubated  again.  They were going to give me a higher  mestinon dose every 4 hours but the effect wears  off. So  I had asked for  every  60 mg 3 hours as I had read of a Mother giving her 3 year old this type of dose and I think  it gave  a consistent  low level  assistance  over a 24 hour period.  But the hospital knew me quite well by this time and I had a  very understanding neurologist, and we were all trying to work out how to control the MG.  Which I had made worse as I delayed going onto  the Azathoprine (and the various other options, cellcept etc) as I had never had a severe condition before nor been in hospital as a patient.  I hope this helps and my apologies for it being so long. My MG became very bad because I resisted taking  any drugs and  then stress and life and infection occurred, Swine flu being the major trigger for the first crisis.  I would get it under full  control if you can with one of the immune suppressant drugs, while you are relatively well. But we are each different in our experience of MG and most medical professionals do their best, hopefully you can find one you can trust over time. Immune suppressants or steroid sparing agents such as Azathoprine, cellcept, etc, are designed to get patients of steroids altogether, but  it does not always work as hoped, but it does with some patients. It is all trial and error, as someone has said in this thread, MG sufferers used to die, now we can live a relatively normal life and normal life span, once we are stable with the medications that work for us individually.

    • gulshan-k-duggal

      Member
      November 21, 2022 at 2:32 pm

      Initially I was also on steroids prednisone but gradually it was tapered off to 5 mg a day along with mestinon 60 mg twice a day and azathioprine 50 mg twice a day. Slowly my Neuro stopped the prednisone completely.F or the last about one year I am on mestinon and azathioprine as above and I am stable.The problems associated with MG affecting quality of life ,will not go completely and MG  Patients  will have to bear these with courage and patience .

      you can have this alternative after consulting ur Neuro/GP.

      all the best remain cheerful.God bless u

    • kelly-criezis

      Member
      November 24, 2022 at 4:10 am

      Hi Barry. I agree with the gentleman who mentioned you need to stick with a neurologist who has a lot of experience in MG. My husband was diagnosed with ocular about 18 months ago and through this group I was able to find a wonderful neurologist in Hackensack New Jersey who has been a blessing to him. He deals with a lot of MG cases and quite a few of them are very critical hands his understanding of the correct approach. In the end it is a bit of an art more than a science but we have the upmost confidence in his physician. Good luck if you are in New Jersey happy to share his name

  • sharon-haw

    Member
    October 26, 2022 at 6:19 pm

    My neurologist (Canada) said the usual drug protocol upon generalized MG diagnosis is to treat for a year with low dose prednisone AND a longer term less invasive med like mestinon. I had elevated liver enzymes on mestinon which was replaced by mycophenylate. I was weaned off prednisone by 1 year & continued on mycophenylate alone.  Mycophenylate is an immune suppressant, mestinon is not. Best to start with the less invasive treatment first.

  • jennie-morris

    Member
    October 26, 2022 at 8:10 pm

    I would be extremely careful with seeing a doctor that will attempt to diagnose you with something other than MG. Once you have a different diagnosis, that is often incorrect, it makes it harder to get medications and services for MG paid by insurance.
    I don’t respond to prednisone but have been on varying doses of Mestinon for 40 years (and on a side note, I just had a so-called specialist (neurologist) tell me they didn’t know what I have but it probably isn’t MG – I nipped that right away) and have tried other treatments. There are many. IVIg work best for most people. Imuran, Cellcept, and Prograf are good options. Rituxan and Hizentra also are good but expensive options (worth going the extra mile to get them covered). Plasma Exchange is another option. I’ve tried all of them in the past but I have reactions to most medications. Currently Hizentra and Rituxan work well together.

  • bz01s0

    Member
    October 26, 2022 at 8:36 pm

    I was on prednisone for 12 yrs. Never knew it would affect my adrenal gland’s till it did. Weened off pred but it took about 19 months. Was a terrible experience. Currently on Cyclosporine.  Tried Imuran and cellcept. They didn’t help. My adrenals never revived so am on hydrocortisone. Good luck to you.

    I had to go to many different doctors and specialist to get to a remission. It’s good to see a variety of specialist if your insurance covers it. And do your own homework.

  • robert-davidson

    Member
    October 26, 2022 at 9:05 pm

    I’m on 5 mg of prednisone plus monthly IVIG.  I have a Neurologist who’s specialty is MG, plus ALS, at a major medical center/hospital in San Francisco. So, I got lucky when I went to The ER to have him assigned to me.  The problem with felling like you are in a lab experiment is that no drug works for every person. And what doesn’t work for you may work fine for someone else. My PCP told me that drugs are FDA approved if they prove to help as little as 5 or 10% of patients and it’s never 100%. Which, of course, means they are ineffective for 90 to 95% of patients. So the doctors often have to try different medications, or combinations, to attempt to find what works best for you. For my part, if I’m with a specialist in my condition, I have no problem trying different medications. My Neurologist told me that up until the discovery several years ago of prednisone helping MG patients, MG was essentially a death sentence.

  • jim-lisy

    Member
    October 26, 2022 at 10:41 pm

    I would like to support the reply of Robert Davidson. I am the caregiver for my wife, who is recovering from a MG crisis that had her in the ICU on a ventilator for over three weeks. Her initial medication was mestinon, when her MG was diagnosed. It worked at first, lost its efficacy even at (much) higher doses. When her respiratory system crashed, she was initially on IVIG, which stabilized her but didn’t really help her improve. Plasma pheresis did the trick and within 4 days after the treatments were over, she was out of the hospital and into a Rehab hospital. They tried to introduce mestinon while she was in the ICU, but it just made her nauseous and she refused to go back on it. She is seeing an MG specialist and I would strongly recommend that anyone with MG, find an MG specialist. He is now treating here with prednisone and azathioprine. After one month, he reduced the steroid by 1/3 and double the azathioprine, the goal is to get her weaned off the steroid so she can have her thymus (and imbedded thymoma) removed. The surgeon want the prednisone at 20 mg/day or less. At times it seem like they are just trying different medications, and that has some element of truth. BUT, this is a snowflake disease where everyone is different. We both have great confidence in our neurologist and truly believes that he is choosing what he thinks is best, based on his years of experience. Next month, we move on to Vyvgart infusions to again reduce the level of medications, at his recommendation. We’ll keep those fingers crossed.

  • douglas-manning

    Member
    October 26, 2022 at 11:44 pm

    I really appreciate the comments regarding:

    1) The journey for each of us with MG is unique for each of us,

    2) The “toolkit” of medicine available to physicians is filled with medicines that met a standard that was a patient receiving the medicine during clinical trials had an improvement that was statistically significant compared to not taking it. As stated the percentage improvement has a broad range. I think that wide range is reflected in the wide range of the state of control that each of us lives within,

    3) Having a physician/specialist who understands our disease state is so very important, but even more important is that we each learn as much as we can so that we can be a contributing part of our healthcare plan.

    4) Every medicine has a plus/minus impact on our lives.

    For me, prednisolone is the foundation medicine in my cart. I’ve tried and failed to get positive results taking every immunosuppressant and none knocked out my ACHr + status until we started Soliris. But even now I still require plasmapheresis every 14 days and 12.5mg prednisolone. Like others the much higher doses of prednisolone has gifted me with diabetes, cataracts, multiple muscle tears, and lots of miscellaneous infection events, BUT I’m still here! And I can feel the lack of a dose of prednisolone within hours if I miss a dose.

    I do hope for the next medicine that might allow prednisolone to be in the rearview mirror… someday.

     

     

  • sally-w-hardter

    Member
    October 27, 2022 at 11:51 am

    It is so hard to find the right medication for sure. We are all struggling with that I’m sure. I was off all medication (prednisone-mestinon) after my thymus/thymoma was removed in 2013 but in a year, after a bad viral cold, my eye droop, double vision and general weakness came back. Instead of restarting prednisone, I was placed on Cellcept 3000 mg but that took six months to work and I find that Mestinon really does not work that well for me, even at a low dose of 30mg, three times a day. I get cramping and other GI issues and sometimes I think it makes my eye ptosis worse! My Cellcept was reduced to 1000 mg since I responded so well BUT, low and behold over but this past HOT and HUMID summer, my ptosis has come back and has yet to be resolved. I have been off prednisone for 10 years and my primary suggested a 10 day dose pack to try along with going back to my full dose of Cellcept. So far, minimal help but I refuse to try steroids again if I can really have a say in it and hope that my Cellcept will kick back in! Best of luck.

  • brad-herndon

    Member
    October 27, 2022 at 1:32 pm

    I have generalized MG with the primary symptoms being diplopia and ptosis, which are currently kept in check with alternating days of 20mg/17.5mg of Prednisone along with Mycophenolate.  Mestonin was a non-starter for me as it wasn’t that effective and produced the unpleasant side effects of stomach upset and intermittent eyelid spasms…very annoying.

    I have been on this current treatment regimen since April of 2022.  Everything is pretty normal, except for the occasional bout of fatigue and worsening diplopia when I get either really tired or overheated.  My neurologist tried to wean down from 20mg to 10mg during the summer, but ocular related symptoms returned at that level, so she elevated back up to 17.5/20mg prednisone alternating days. …so a tiny bit down from original max dose of 20mg per day.

    I , too, know that you can’t stay on prednisone forever.  So far, only ill affects have been suppressed adrenal gland function re: cortisol, but otherwise A1C, other internal functions and levels have stayed normal.

    I fully adopted an anti-inflamatory/lectin free (Gundry) diet since this started and have been able to lose some lbs since then…I was fearful about the prednisone causing weight gain.  This, along with daily walking and some light kettle bell workouts thrown in…I think…have all contributed to maintaining these milder symptoms.

    My official diagnosis was last December 2021, but this journey actually started 2 years earlier when a surgical ophthalmologist misdiagnosed my condition as strabismus, subjected me to surgeries on both eyes, with only temporary resolution before the diplopia and ptosis returned.  (When I couldn’t get further help from eye surgeon, my PCP is the one who referred me to a neurologist upon observing the ptosis.)  Based on these factors (that initial onset of MG was most likely 2 years prior), my neurologist feels like my condition will most likely stay at its current level or possibly improve, but the big challenge of getting off the Prednisone remains.

    (As a side note:  when an adult develops sudden ‘idiopathic’ double vision and eye surgery is recommended, the first thing that should happen is the doctor should order an AChR blood panel…which would have saved me a lot of expense, frustration, and unnecessary surgeries.  I hope that my ophthalmologist will take this to heart, seeing how big his eyes widening when I told him upon follow visit that I had an MG diagnosis.  This should just be standard procedure.)

    I could get lucky and the Mycophenolate could start having a more significant positive impact on symptoms (my neurologist has stated that it can take up to a year for Mycophenolate to fully kick in if it is going to help as a treatment option, so still a wait and see on that. Theoretically, this would support the prednisone wean off.

    Sorry for the long winded post, but hopeful that there will be a good replacement for steroids without side affects someday.

    I appreciate all the good information and feedback and am so respectful and mindful of everyone’s journey.  I learn something every time I long on.

    Thanks.

    • TheresaG

      Member
      October 29, 2022 at 12:22 am

      Brad-

      I am seronegative, that said prior to dx, after numerous  negative antibody test, was sent to a surgeon as you were. I was a weekend from obtaining the surgery, when a gf asked me if it would alter any cosmetic issues on my eyes. I did not know so emailed the dr. And he said, possibly could but could be repaired by a cosmetic surgeon. I cancelled the surgery, so glad I did as I was dx’d that fall.

      im glad the prednisone is working for you, it did me too. But just be careful, my symptoms, cortisol, weight gain, thin skin, emotional angst, etc prednisone issues began after 2-3 years on prednisone. Wham. I was never higher than 20 mg/day. Am now down to 7/day and in VyVgart, and Mestinon.

      Prednisone is great, sadly it is a devil as well.

  • mariamartin

    Member
    October 28, 2022 at 10:29 pm

    I’ve been diagnosed for 30 years. Some doctors said/say I don’t have it because I’m antibody negative. But the doctors I trust the most, say if it walks like a duck and quacks like a duck, it is a duck. Unfortunately, I’ve been on prednisone most of that time. Anywhere from 20 mg to 100 mg. I don’t think I can survive without it, as much as I would like to not take it. I’ve learned over the years, I have to trust my gut. I do want sound medical advice and I would love to not have MG, but I do. Do what you think is right and try your best to find a doctor who listens to you. Best of Luck!

  • wayne-eisen

    Member
    November 4, 2022 at 7:53 pm

    Has anyone had a doctor prescribe anabolic steroids rather than corticosteroids?

    Thanks!

  • jane-delisle

    Member
    November 4, 2022 at 8:09 pm

    Besides being necessary to find a real MG specialist, it’s important to find one that knows how medicines work, not just one who prescribes based on textbook doctrine. For instance:

    Mestinon is a band-aid, not a solution. It merely amplifies acetylcholine nerve communication to affected muscle cells. It does not reduce the autoimmune attack on the muscle cells. It will also overamplify communication to non-affected muscle cells, including smooth muscle cells in the gut that use the muscarinic acetylcholine receptors instead of the nicotinic acetylcholine receptors. Which is great if someone also has gastroparesis and suspected mAChR antibodies as well as nAChR antibodies, but can cause gastric upset if the gut muscle cells are unaffected.

    MG should be viewed as a part of a spectrum of autoimmune diseases that all have the same thing in common – mis-programmed plasma cells churn out auto-antibodies that target something in particular. Prednisone and DMARD drugs (Methotrexate, Cellcept, Azathioprine and others) work to interfere with plasma cell programming. The newer biologics are more of a “smart-bomb”, they target more specific points in the process that either program plasma cells or the auto-antibody attack itself on a cell. I am amazed at all the different biologics being applied to MG research but access to those by MG patients are very limited.

    At this point, though, there isn’t anything that specifically targets the MG antibodies themselves, sort of an anti-auto-antibody, and there are at least 7 different auto-antibodies discovered to date (I think) that will interfere with nerve/muscle communication and cause MG symptoms. We have a long way to go.

    On a more mechanical level, IVIg adds healthy antibodies, and I don’t think doctors know why this works. Plasmapharesis removes antibodies out of the bloodstream, including the bad ones.

    Then there is the “diabetic” medicine Metformin. It’s actually an immunosuppressant. Immune cells need glucose energy to make antibodies, and Metformin shuts that down. (So do special diets like keto, which try to avoid eating anything that can be turned into glucose.) I’ve seen research articles going back 10 years about how piggybacking Metformin onto other autoimmune treatments could make them more efficient, and I just saw a new research abstract this year that suggests Metformin might also help with MG therapies (but I don’t have a subscription and can’t download the whole thing).

    Finally, it took a thymectomy to get my daughter off of Prednisone. A whole bunch of other non-MG, undiagnosable symptoms have also been resolving since then, weird. As a long-in-the-tooth programmer, it hit me that the Thymus gland essentially boot-straps the adaptive immune system during childhood and is supposed to go off-line at puberty. Daughter had thymic follicular hyperplasia, essentially her thymus was still active and bloated, churning out programming instructions for God-only-knows-what to the immune system.

  • david-k

    Member
    November 4, 2022 at 8:38 pm

    general MG for 12 years.
    full blown symptoms
    self diagnosed . i went to med school.

    no pred. ever.
    the stuff is toxic waste.
    i take mestinon 2 tabs daily
    split into quarters spread over 24 hours.

    any neuro who would like you to get off pred. has my blessing.
    go for it.

    • wayne-eisen

      Member
      November 4, 2022 at 9:24 pm

      I know that prednisone has a negative impact on bone density. That’s why I’m wondering about anabolic steroids as a treatment.

  • david-k

    Member
    November 4, 2022 at 11:02 pm

    pred. can cause optic nerve detachment.

    you won’t find that in the side effects list.

    long term it is toxic waste.

     

  • jonathan-a

    Member
    November 7, 2022 at 10:19 pm

    Get your doctor to taper you off Prednisone as soon as you can.  For eight months, no a single doctor or hospital could diagnose my acute ocular and generalized MYASTHENIA GRAVIS. I was finally diagnosed by a third floor nurse at the second hospital.  She recognized my 8 or 9 symptoms and talked the doctors into a neuro consult and thymus/antibodies tests.  Thymus fine all three other test scores through the roof.

    The first hospital had me on statins for no reason. The second hospital put me on the steroid PREDNISONE for MG  … so with both I got MEDICALLY INDUCED DIABETES II and my scores were 350, 400, and over.    After the third hospital, they tapered me off PREDNISONE and KILLED IT, so my new diabetes doctor got me tapered off of Lantus shots on October 25, 2021 and my numbers are 110 to 115  … so no shooting up any more and my PREDNISONE induced diabetes II is in remission.

    My MYASTHENIA GRAVIS is in REMISSION since Christmas of 2020, after 5 months in 5 hospitals in 2020.  I have had only my 5 days of 5 hours of IVIG  … when I was finally diagnosed.  My Prednisone is dead now  … and I take 180 MGs daily of MESTINON and 2000 MGs of the immune suppressant CELLCEPT    .. so I am fine now  … and no more IVIGs.

    Join MG support groups and ZOOM with them. I belong to 4 groups.  They can tell you what works and does not work for them  … along what doctors locally are MG clueless to avoid, and which doctors know about MG and what symptoms we have  … to correctly diagnose us and treat us. Then stick to the MG savy like glue.  He will keep you alive and walking.  KNOWLEDGE is POWER to stay safe and in REMISSION.

    If you have an MG clueless doctor  .. ditch them and quickly find a QUALIFIED doctor who knows MG   …. Your MG support group moderator will have names of doctors, who have been properly educated and can help you.  I had three neurologists at the first of 5 hospitals of 2020.  They made everything worse  … as I got an overdose of anesthesia, because I was moving to much in X-Rays and phlegming and trying to stay on my side  …. so I was sedated for MRI and CATSCANS.  It is dangerous to suppress the breathing of undiagnosed MG patients with sedatives such as Propofol and Rocuronium  … when MG already suppresses our diaphragm breathing.  So wear a MG medic alert bracelet, and warn people of your acute needs.

  • wayne-eisen

    Member
    November 16, 2022 at 2:25 am

    Dear Jane DeLisle,

    What an amazing mom you are! Thank you for a very informative discussion!

    Wayne

  • wayne-eisen

    Member
    November 16, 2022 at 8:29 pm

    I haven’t seen a response to my question about anabolic steroids being used instead corticosteroids. Any thoughts ot experience in that regard?

  • Deleted User

    Deleted User
    November 16, 2022 at 8:48 pm

    My wife is LRP4 MG for about 6 years. She also has had Crohn’s for over 20 years. She was on so much Prednisone due to the Crohn’s that she is adrenal insufficient now. One of the docs changed her to Hydrocortisone instead of Prednisone because it is less damaging. That worked okay but now is back on Prednisone due to other issues, When she was on Imuran she had low hemoglobin and RBC to the point she needed transfusions. Once she had Rituxan 3 years ago and got off of all MG meds her hemoglobin returned to normal pretty quickly. Hope that helps…

  • Jane

    Member
    November 17, 2022 at 2:48 pm

    US  I’m on prednisone for over 14 years   Down to 2.5mg   But also on Cellcept 2500mg daily which I understand will replace the prednisone when I am finally off it.  My body tolerates Cellcept so I am lucky.   I agree with others – be careful what muscular physician bring referred.  My mg neurologist handles all.  Good Luck

  • deborah-a-dortzbach

    Member
    November 17, 2022 at 6:38 pm

    Just chiming in on the steroid question and choice of doctor. With MG it is important in my opinion to remain with as knowledgeable a physician with MG as your insurance and physical location allows. The field has significant scientific advancement but it is specialized and takes such individualized management making physician practices difficult to gain experience. In my case, I was on high levels of steroids for management, like others initially but the goal was always to reduce if possible and today after very careful management and a long process (more than a year) I am nearly completely weaned and fully on mycophenolate (cellcept). I feel great and function almost normally barring the common fatigue. I tell my doctor frequently “I am in a good place.”  Now, to lose those prednisone pounds!

  • deborah-a-dortzbach

    Member
    November 17, 2022 at 6:38 pm

    Just chiming in on the steroid question and choice of doctor. With MG it is important in my opinion to remain with as knowledgeable a physician with MG as your insurance and physical location allows. The field has significant scientific advancement but it is specialized and takes such individualized management making physician practices difficult to gain experience. In my case, I was on high levels of steroids for management, like others initially but the goal was always to reduce if possible and today after very careful management and a long process (more than a year) I am nearly completely weaned and fully on mycophenolate (cellcept). I feel great and function almost normally barring the common fatigue. I tell my doctor frequently “I am in a good place.”  Now, to lose those prednisone pounds!

  • cary

    Member
    November 18, 2022 at 11:12 pm

    I was diagnosed with MG just this past August 2022. I had one episode of MG crisis that went pretty bad. Spent time in the hospital. When I got out it took five weeks to get a neurologist through my insurance. He put me on 80 mg of prednisone a day and 300 mg of Mestinon. I felt like it for five or six weeks. Until like the last two weeks I’ve taken a die for the worst and I think it’s the steroids. It took the neurologist office a week to respond if any of my request to start stopping the prednisone because I was having every horrible side effect that you can have. Just today when he finally got in contact with me. He’s going to start reducing the prednisone, over a month or so and he started me on CellCept today along with them Mestinon. it sounds like the CellCept works for some people but it may take a while to kick in. Just wonder if someone could give me insight on this. I’m just an old construction worker, and not Very eloquent speaking. This is my first communication with anyone other than myself that has MG. So thank you for any help

  • jonathan-a

    Member
    November 19, 2022 at 12:13 am

    I am a construction worker also,  and supposedly OLD  (I remember where I was and what I was doing when JFK died on that Friday).

    I am finally ME AGAIN, and am in MG REMISSION now.  Age is a state of mind. I don’t feel OLD, now that my symptoms are in REMISSION, except for ACUTE ONSET INSOMNIA  … but those damn doctor offices all keep using YOUR BIRTH DATE, as your medical ID   … and that is age discrimination.

    I am daily on 180 MGs of MESTINON,  2000 MGs of CELLCEPT, and my PREDNISONE was KILLED  … so I feel me again  … and my mouth, eyes, throat, fingers, arms, and legs, are working okay now so I don’t “MELT INTO THE FLOOR” or need a pliers to open a bottle of water.  So I am ME AGAIN  … but I don’t know what MEDS are helping me, what are hurting me, and what are interacting badly with each other.  So I take my pills RELIGIOUSLY and hope to stay safe.

    So that works for me  … and been in REMISSION since Christmas 2020.

  • cary

    Member
    November 19, 2022 at 1:06 am

    Thank you very much for your response, all that was something I needed to hear, into my ears it was all positive news, so it’s the first thing I’ve heard that makes me feel good about getting better in time. Really needed that.

    I guess when anyone first gets diagnosed with some type of autoimmune disease, it sneaks up and grab you from behind, and really knocked me to my feet. It’s been a tough few months. But I’m trying to keep a positive outlook to the future. And returning to my normal life also. Thanks again

     

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