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Weaning off medications
Withdrawing from medication can lead to unwanted side effects, potentially very serious if an individual is weaned off too quickly or stops the medication abruptly. It is impossible to predict who this could affect, so it is medically accepted that patients wean off all drugs gradually with doctor instructions. Often a patient is only told to completely stop the medicine if it is causing critically dangerous side effects.
What has been your experience decreasing certain medications? What side effects of reducing medication doses do you wish you knew beforehand that nobody warned you of?
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11 Replies
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I am currently taking for my myasthenia gravis 35 mg tablets once daily of azathioprine and 2 tablets of 60 mg pyridostigmine three times daily, as well as one tablet of lisinopril 5 milligrams daily one tablet of pantoprazole daily one tablet of Metro polo daily one tablet of Met Forman daily three tablets of hydrocodone daily 10 to pre-Gabalin daily 75 mg each along with a bunch of vitamins daily I wind myself off of some of the hydrocodone by cutting back from 3 to 2 daily for a month, and then one for a week and then one every other day with the pre-Gabalin, I cut back to two a month and one a week and then none with the azathioprine I cut back to 2 1/2 for a month and then two for a month. It’s very difficult cutting back because my body keeps on going through the shakes and difficulty sleeping in and have a colon surgery that was botched by a doctor and that’s contributing to pain and I like to sleep along with the myasthenia gravis I’m just living day by day in a lot of pain that’s all but I know God has better plans for me
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Amen. I’m waiting for him.
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My doctor has always been careful about weaning me slowly from meds. I started with Mestinon when I was first diagnosed, but we have now stopped it after cutting back over time. My prednisone has also been cutback slowly and is now down to 8 mg per day. In no case have I had any side effects.
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How’s your balance, walking and vision? TIA
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By June 1 I will have completed 3 months of Cellcept in conjunction with 20 mg daily Prednisone. I will start the weaning off the Prednisone process then. I don’t have much to contribute, but I’ve cancelled my usual travel plans for the summer. I want to be near my neurologist and an ER I’ve checked out, just in case. My family has to come see me this summer.
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Family is very important, so is the Nero. and ER. God Bless.
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Hi, I went from 10mg of prednisone to 9 in mid-February. Took 9mg for 2 weeks, then 8 for two weeks, then 7mg, then 6 and 5, but with 4mg I was slurring quit regularly and went back to 5mg. Any time I try to go to 4mg I slur even if I do it between two days at 5 mg.
It’s frustrating! I’ve been on prednisone for about 9 months and have only gained 10 pounds (175 to 185) but have had to really work not to gain more. I’d love to get off prednisone so I’m not fighting weight gain all the time.
Good luck in all your weaning adventures!
Frank
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Does Predesione help w/ walking (balance), vision and all the other things MG gives us? TIA
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Yes, but progress is slow. In my case, nothing would happen for several weeks and then suddenly you notice “my left eye didn’t droop all day” or you wake up and notice that the ceiling fan has five blades now instead of 10. Celebrate each milestone.
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I have been in REMISSION from severe MG since left my 5th hospital of 2020 on Black Friday 11-27-2020. Every doctor who saw me in 8 months wasn’t helpful. A nurse at the second hospital had seen MG patients in her hospital career, and talked her NEUROLOGIST friend about my 10-12 symptoms. He gave me a NEURO CONSULT and I had 6 superhigh SERO-POSITIVE Antibodies scores. They were so horridly high that he repeated BINDING twice and BLOCKING once.
So I am safely in REMISSION … after only 5 days of 5 hours of IVIG … and same dosage of meds always since then… 3 x 60 MGs daily of MESTINON and 2 of 500 MGs of CELLCEPT in Am and PM equal to 2000 MGs of CELLCEPT daily. I have severe ONSET INSOMNIA and it still takes hours to fall asleep … you keep waking up and only get 3 – 4 hours sleep every night.
I am now looking for a NEW decent primary care doctor … as my current doctor keeps taking my blood but never telling me the TEST RESULTS, never will talk about my 12 meds (5500 MGs daily), or getting me a MEDS RECONCILIATION CONSULT from someone/anyone. I am still on 5 blood thinners/anticlots from 5 doctors, who were unfamiliar with MG diagnosing … and I have O positive thin blood already.
My other 4 DOCTOR SPECIALISTS are MG SAVVY, and extremely helpful. Since I have been in REMISSION for over two years now, I take my MEDS RELIGIOUSLY, and never change anything, as I have been through 5 months in 5 hospitals in 2020 … recovering from doctor mistakes such as 100% hearing loss (meds antibiotics OTOTOXICITY) for 4 months, 100% speech loss for 4 months (they slit my throat & trached me), and a CODE RED due to an anesthesia overdose because … as an undiagnosed MG patient, I moved too much during X Rays … phlegming and choking, so was oversedated for MRI/CAT tests.
So please be careful and make absolutely sure that you have an MG SAVVY doctor to assist you.
Thanks to a great and understanding ENDOCRINE DOCTOR who was MG SAVVY, my score is now 78 to 112 and A1c of 6.1 and NO MORE SHOTS. My poor MG clueless primary doctor did not understand MG, diabetes, or LANTUS … so was a total failure.
SO surround yourself with INTELLIGENT, PATIENT-FRIENDLY, MG SAVVY DOCTORS who will help you taper off. If your current doctors are not so hot, WALK OUT THE DOOR. You can find a new doctor, but it was hard for me, after my first hospital’s ANESTHESIA OVERDOSE … I was not breathing and unresponsive due to ACUTE HYPERCAPNIC RESPIRATORY FAILURE due to ANESTHESIA. You only have ONE BODY … SO BE SMART and ALIVE … as we all know how HORRID MG SYMPTOMS are … you life STOPS and you are always home, and returning to bed to get your strength and “eating/swallowing/walking” abilities back.
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I was in the process of weaning down Prednisone from 40mg to zero (I was in remission) and got as far as 15mg last month. But then I had a long, severe sciatica episode with excruciating chronic pain, combined with a strong and emotionally stressful incident. As a result my MG symptoms returned a couple of weeks ago (particularly the swallowing/slurring) and I had to go back up to 20mg (and, unfortunately, Bactrim too, which causes G.I. symptoms that I REALLY dislike). The current flare-up is better managed now that I have learned a lot since my previous flare-up (as has my Neurologist, I might add) and thus my current symptoms are comparatively less severe due to better use of Mestinon. If the symptoms don’t start subsiding very soon then I will have to go back up to 30 to 40mg Prednisone and restart the weaning process (again). Grrrrr. The one good thing is that each time I go through all this I learn more about how to best manage the usage of both Prednisone and especially Mestinon.
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