They think she has fibromyalgia. She is in excruciating pain more so in the evening when she sleeps. This is her 3rd and heaviest round of Prednisone. Starting at (4) 5mg tabs a day for 14 days then decreasing to (3) for 14 days and then 2 a day ect. The last time she was on a high dose was only for a week and caused her incredible anxiety, high heart rate (which btw, she has a heart condition), diabetic reactions and blurred vision. The symptoms of fibromyalgia always come back within weeks of finishing the Prednisone. Does anyone have any other suggestions? Gabapentin maybe?
Hi Julie,so sorry about your mom.I have fibro and have high sensitivity
to drugs and their side effects.Has she been questioned on symptoms
for polymyalgia rheumatica? The pain would go away with prednisone
if she has pmr.But with fibro I'm not sure what it would do.I have taken
gabapentin and couldn't manage the sedating side effects during the
day or the raised heart rate.But maybe your mom can handle a low dose.
I'm sure others will chime in.
With prednisone they have to ween her off. Not because it's addictive but because it can cause withdrawal symptoms. It's a corticosteroid so it's meant to help with inflammation and produce cortisone. It's not meant for long term care. It can wind up suppressing your immune system. She has to be careful with other medications cause there can be interactions. I've been on it, as well as family members, for asthma. I get puffy and gain a ton of weight cause I was always starving. Another side effect of the medication.
If she has been diagnosed by a rheumatologist with fibromyalgia they should be discussing long term treatment plans. Each person is different and depends on what works for them. I personally couldn't take meds due to sensitivity,so I do supplements. Others swear by their meds. But her doctors should be discussing her medical history, drug options and physical therapy for her.
This is her 3rd round. The first time was in July/August of last year, it was over 30 days in total. The second was for about a week in total and currently it will total 56 days which is nearly 2 months on a higher dose than she's ever been on. She has her primary care doctor and her cardiologist. I am very uncomfortable with this. I want to do supplements but can't when she is taking the Prednisone. The only other pain med they attempted was Salsalate which after her first dose she immediately started having sharp pain in the mid-left side of her chest, her heart.
Thank you! Raised heart rate is concerning. I wish there was something that could calm her pain without threatening her life. I'm becoming very distrustful of her doctor.
Her primary care needs to give her a referral to a rheumatologist. They are the ones who usually make the diagnosis of fibromyalgia by doing a tender point test and help treat it.
Many primary care physicians aren't informed enough on fibro. Most think we are crazy but its just starting to get recognitionas a disease. I had a doctor tell me I was just depressed and needed to get up and move. When i complained about my heart rate he said it was fine. I walked out and called my health care provider and got a new doctor. I had several tests done and saw necessary specialists. I had fibromyalgia, chronic fatigue syndrome and they found a leaky valve in my heart. You need to advocate for your mom like I did for myself.
Thank you. I will be doing everything I can. This site is giving me much information to discuss with her doctor. If communication doesn't fair well, I will seek a new doctor for her. I only have 1 mom.
Glad I can help. I would also talk to her cardiologist. Some of the meds for fibro can have side effects within the heart. Specialists don't forward test results and meds to primary and vice versa. So make sure you get copies of test results and keep a list of meds to update doctors.
Good luck and keep me posted on mom's health. Wish you all the best!
Updating as I go. I've spoken with her doctor. He agrees it may be PMR, he is not a rheumatologist, he is her general physician. She had a biopsy for temporal arteritis which came back negative, but thinks the result may be wrong. He wants her to continue with the Prednisone at the dose I explained and will reassess in about 2 months.
I will post more as things happen.
Is her doctor giving her a referral for the rheumatologist?
Hi
It sounds to me like your mother has polymyalgia . It takes a simple blood test by a gp then it's steroids for a considerable time.
I started on Amitryptiline, after which i was put on Pregabalin,and then i was Naproxen. i have alot of problems with my memory and am due to have a brain scan soon. i have never heard of Prednisone but it does not sound to me like she has fibromyalgia these symptoms seem to me different than fibromyalgia symptoms
Thanks Julie for the update.If you go to the pmr forum you
will get excellent advice from Eileen and Anhaga.Wonderful
ladies and warm support.I hope something can be given to
your mom and to ease your fears.Hugs Tory
Hi Julie, I have been diagnosed with fibro for past 9 months
but both I and my doctor believe I have had this for probably 2 years.
All the usual symptoms everyone else talks about with extreme pain,
exhaustion, brain fog it's got to the stage I can no longer work and I am
very isolated. I actually believed I was going insane. 4 months ago I
went on Prednisone, I got instant relief from pain but not from other symptoms.
My doctor gave this to me as a last resort and he expected no relief.
Prednisone should not work for fibro pain.
I have twice tried to slowly reduce my dosage, by 1 mg at a time,
and have had to go back on full dose within days. I now have high blood pressure
and am now also prediabetic.Not what I want. What I am getting at is that I
am taking whatever's going to Stop the pain.
I'm so sorry got your mum, and wish her the best, YOU are her angel.
Bless ...
i was diagnosed with fibromyalgia after i had TB back in 2014. i have been off sick from work for 2 and a half years and dont know what i am going to do if i cannot get back to work. my memory is bad. they told me that apart from brain fog, i also have down syndrome which means that my memory will eventually fail from the age of 40 which is quite worrying.
i was diagnosed with fibro about 2 years ago. and have never ever been in so much pain in every part of my body as i am now. i understand what you are going through
Yes.