Adverse Reactions Going Down From 10mg Prednisone

[chrism]

My up and down curves took 22 months, far longer than ideal.  Every single dosage adjustment knocked me hard for days, mainly emotionally where I just wanted to crawl into a hole.

[carrie-mcdade]

I am doing a slow taper from 30 mg of prednisone, decreasing the dose every month: 30, 25, 20, 17.5, 15, 12.5, 10, 7.5, 5, 2.5 and discontinue on Oct 9. I have been on 5 mg for 3 weeks and feel better and better, mostly I think due to better blood sugar control. At higher prednisone doses, I took 1/2 Mestinon twice a day. Now I am taking 1 Mestinon three times a day.

I was diagnosed Nov 2020, AChR positive, with mild double vision, facial weakness, neck weakness (unable to lift head from lying on back). I am in remission, except for pain in neck and shoulders at the end of the day.

[john-ulfelder]

I am new to MG. It began for me in early March. My  neurologist prescribed 30  MB’s of prednisone  daily along with Mestinon. I started having bruising on my arms and legs, occasionally one would bleed. My neurologist dropped the daily dose to 25 MGH. Still having bruising and bleeding problems  but no other problems.

 

[jonathan-a]

It is really hard to know what to say about one’s medications.  All the doctors kept dumping things into my body, and you don’t know what it is, why you are getting it, and you are left totally clueless.  The doctors were all prescribing medications based on  … what diseases “older people” should have and were not listening to the MG symptoms I did have (but I did not know what they belonged to).

But now  I have finally been diagnosed with MG, been treated, and am in remission and home from 5 hospitals in five months.   I am finally able to sort thru all my continuing medications, bottles, and paper bag drug info inserts,    ….. with the weekly visits of my very helpful home care nurse.

She pointed me to medical websites such as John Hopkins, MAYO, and MG Forums.

So I am still on over 5000 mg of pills and a syringe daily of 15 meds.   It has only been with googling and the help of my visiting nurse…. that I know know what I am taking, why, who started me on it, at what dosage it started in beginning, and what side effects each has.

So I have been in remission since 11-27-2020,  caught MG in 7-25-2019, and finally diagnosed by a intelligent hospital nurse  … who recognized my 8 or 9 MG symptoms on 3-24-2020.   SO I am not wanting to change ANYTHING drug wise … lest I fall out of remission.

According to my visiting nurse … my Myasthenia medicines are Mycophenolate Mofetil (cellcept)  two 500 mg in am and two  500 mg in pm daily  ………   Pyridostigmine Bromide (mestinon) one 60 mg pill in am/noon/pm daily  …..   and Prednisone one 20 mg pill in am/noon/pm daily.

I am still taking the first two drugs  …. but I was having very severe, bad reactions to Prednisone ….  The first hospital started me on Prednisone, after they gave me Acute Respiratory Failure and the nurse called a code stroke and got me resuscitated and alive again.  They could not diagnose MG … and they suppressed my MG suppressed breathing with a BAD anesthesia to stop me from moving for MRI and CAT tests. So I basically died once already. and was administered last rites by a priest in ICU.

Two months later …. when I was finally diagnosed with Myasthenia gravis.. the MG doctor upped my prednisone dosage.  I had horrid results.  The Prednisone, along with statin drugs precipitated my blood sugar reading to the roof.  So I now had Diabetes II (which I never ever had),  Lantus and  Lesbro ?? syringes regularly,  a large weight gain, and every night severe onset insomnia… where it takes hours to fall asleep. So my MG doctor finally reduced my three a day 20 mg prednisone pills … to two 20 mg pills am and pm daily,    then after Thanksgiving 2020 …. the fifth hospital killed off the prednisone entirely  …. so I am feeling fine now …. but have not been able to get rid of the Diabetes since my November 27th,  2020 withdrawal. … but those pricked finger meter numbers dropped tremendously from 350, 400, and HIGH  … down to 120, 42, 74, or 113.

So try to get off the prednisone as soon as safely possible.  So far the cellcept and mestinon and ten other drugs have kept me in MG remission.   I have been buying and reading 5 eBay books I bought …  written by other MG patients  … and they are worth double the cheap eBay price I paid for them.   Every one said …Take prednisone…. and you will quickly gain 40 to 60 lbs  … and they all did …whether it was the 5 foot 2 teenager or the 6 foot 4 minister or the 5 foot 6 doctor.

I was lucky   …  as I was getting sicker and sicker from undiagnosed MG.  From 7-25-2019 at 198 pounds to 2-4-2020 at 6 months later,  I had lost 43 pounds  ….. and spent the next two months still undiagnosed and continued to lose weight on PEG tube feeding.  So,  as I was losing weight being deathly sick,  I was gaining weight back fast on prednisone …. so by mid May 2020, when I was finally allowed to get out of a hospital bed … at the third hospital and go to therapy (to relearn how to stand and walk), I weighed 166 lbs on the  therapy room scales.  But they did not stop the prednisone till 11-27-2020  …. so I ballooned up to 190 lbs today.  Still 8 lbs less that before I was sick and was 198 lbs.

Every MG person is different.  Except for my MG doctor, the other doctors don’t seem to know much about MG, and the bad drugs to avoid that your MG doctor and your MG websites give to you for advice.   You need to educate yourself and be your own quarterback.

There are three great quotes I have seen in my eBay MG  patient books that I am reading, highlighting, and dog-earing.       One…. Rest is for the Dead (but it is still necessary for us that understand rest and MG are bed partners).     Two …. I would rather Manage my Health, than my Health Manage Me!   and  three…. I can’t find my other book to quote, but it basically said that you need to find a health quarterback, preferably your primary care physician. But if he is not MG literate, they you must be your own quarterback… regarding your medications, and listen to what your gut is telling you … about how it feels … and trust your body.