PMR and balance issues
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Early February 2019 I began having gait issues and pain in both shoulders. Sleeping became difficult due to the constant pain that was aggravated by lying down. The pain then began to travel down my arms and I was losing coordination in arms and legs. On February 20 I was unable to roll over and get out of bed. I was unable to lift my arms beyond chest level. When I tried to walk I was floppy, rocking back and forth and had ataxia. I was hospitalized and had brain MRI, CAT scan of brain , blood tests etc. I was treated for a neurological condition but they were unable to determine the cause.
This continued for many months and neurology told me it was stress. I continued to get sicker and was losing the use of my arms finding it difficult to do daily tasks such as bathing, dressing, cooking etc. Finally on June 25th I saw a Rheumatologist who diagnosed PMR. I was put on 20 mg of prednisone and felt immediate relief. The pain lessened, I was able to dress myself and the rocking motion improved.
After 3 weeks on 20 mg of prednisone , I went down to 15 mg for 3 weeks. I was just going to start 12.5 mg when headaches and jaw pain increased and my c-reactive protein and sed rate increased. The Dr. started me on 60 mg of prednisone immediately and five days later I had arterial biopsy on 8/13/19 that showed no inflammation of the artery. I was unable to tolerate the 60 mg so the Dr. quickly dropped me to 40mg, 30 and then 20mg within a few days. I continue on the 20 mg of prednisone but it appears to have compromised my immune system. My liver and kidney function tests are elevated, WBC elevated and immune tests are lowered. The Dr. said I am immune compromised and need to be very careful of infection. On 8/30/19 the Dr. called and told me I had a urinary tract infection based on urinalysis and she ordered ciprofloxacn 250mg twice a day. After speaking with the pharmacist and reading the patient insert I did not start the prescription due to the side effects of the drug.
I will see the Dr. on Tues. 9/3/19 to discuss new lab results, ultrasound of the liver ( fatty liver and gallstones) and how to deal with infection and being immune compromised. I would appreciate and thoughts or ideas on what I should ask the Dr about my condition. Dealing with PMR is difficult but the complications or side effects of the treatment is making this overwhelming.
0 likes, 18 replies
Anhaga Grandmaann
Posted
You were very wise not to take the cipro as it is a type of antibiotic contraindicated with pred and can cause some serious problems.
All of us have reduced immunity when on high doses of pred. Just do what you normally would do to avoid infection - wash your hands, avoid touching your face, especially around the eyes, if you get a cut or other small injury make sure it's disinfected and protected, avoid people you know are sick. I went one winter without having my regular checkin with the doctor because I didn't think it worthwhile taking the risk by sitting in a waiting room full of sick people!
But don't be afraid to live life.
Eat healthy! Did you know the Italians have done research showing that coffee reduces fatty liver significantly? And it's not the caffeine as decaf also works. They said the equivalent of 5 cups daily (espresso, those tiny cups) was enough.
EileenH Grandmaann
Posted
Demand a non-quinolone antibiotic - they are not suitable for banal infections and edicts have been issued warning again their use for anything there is an alternative.
Anhaga EileenH
Posted
I believe the antibiotic my husband is using while his corneal transplant is settling is in in this class. 😦 His other med is prednisolone which I think is to reduce likelihood of rejection. 😃