PMR and balance issues
Posted , 12 users are following.
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
Guest Grandmaann
Posted
Sorry to hear of this difficult journey.
There will be issues to manage as you battle PMR, and it is not fun, but is necessary and with good PRIMARY care, not horrible
An untreated UTI can be a very dangerous thing. You must take the CIPRO. It is a safe antibiotic. Don't read all of those fine print warnings, they will make you crazy, but not as crazy as kidney infections will make you. Infections such as those can fuel a PMR flair and you don't want that .
What was it about CIPRO that you found off putting? I just finished 10 days of CiPrO FOR KIDNEY infections. there are many other meds for this, but if you read the fine print on every med, you will run away screaming
Your WBC is high perhaps due to the UtI. The kidney and liver function blood work needs to be run again, and compared to previous studies. And while we are on prednisone our blood values often change.
it sounds like you do not trust your doctor? you need to trust him/her or find a new one.
As to what to ask your doctor, address what are the issues in this moment--the antibiotic, UTi and blood work
I have MS, PMR and GCA . i get a lot of UTI'S and kidney infections from MS. I have landed in hospital beds. You do not want to go there, trust me on this .
Grandmaann Guest
Posted
I agree with you about the fine print on medical inserts. I know they have to tell you the worst possible outcome. But I have been dealing with undiagnosed neurological problems and have had adverse reactions to several meds. I also have severe muscle cramps in legs, feet and hands, so the tendon thing worries me. i see the Dr. tomorrow and will do what she says I need to do. My Rheumatologist has been very good to me, It has only been two months under her care but I do trust and like her.
Guest Grandmaann
Posted
what a mess we can become!
If you are taking a med to protect your stomach and stop prednisone heartburn, those can cause low magnesium. and that can cause the cramping. 500 mg of magnesium a day could help
it took over me 20 years to be diagnosed with MS, so I know how that feels, knowing something is very wrong but getting nowhere. AND I am a slow metaboliizer of meds so have adverse reactions more than i have positive ones i get it.
i hope your doctor has good answers and solutions for you You deserve a break
Anhaga Guest
Posted
This particular class of drugs in combination with corticosteroids can cause serious problems, for example rupture of the achilles tendon, and other more life-threatening ruptures.
EileenH Guest
Posted
I must disagree with you about Cipro being a safe antibiotic. Especially in tandem with corticosteroids - I spent 9 months on crutches after developing achilles tendonitis from the concurrent use of both. Repeated instructions have been issued to minimise its use.
Guest EileenH
Posted
Absolutely Eileen, somewhere in this big string there is a response to my post that provided great education on Cipro and similar antibiotics
I Immediately wrote a post to grandmamm and others apologizing for my ignorance and thanking the poster for the valuable information. My info was terribly wrong and I am ok with saying so!
I am sorry to hear that you were adversely effected by CIPRO, I am sure it was just awful. like we don't have enough pain and disability
peace
patti52108 Grandmaann
Posted
I havent had that issue but I know what it's like to be suffering and not diagnosed. My sed rate was 114 by the time I was diagnosed. I have to suffer for mths every time I'm off pred. because it takes so long for it to show up in my blood. I am going through it now and dr put me on meloxacam saying its arthritis. I felt great a few mths ago and now I feel like i'm going crippled again. Oh, and meloxicam is doing nothing. Wish I could find a dr whi specializes in pmr. I have beendown this road too many times. I wish you luck. I am worried anout pred. as I have been diagnosed with osteoporosis.
Grandmaann
Posted
I sorry to hear your journey has been so difficult. How long have you been diagnosed with PMR? Do you see a Rheumatologist or Internist ? I began with a neurologist and they basically called me crazy because they had no answers for me. Thankfully the rheumatologist started me on prednisone.
I understand your concerns with the prednisone as I have already become immune compromised and it is effecting my liver and kidneys. Hopefully I can start to decrease the dose to a safer level.
patti52108 Grandmaann
Posted
I started with pmr 4 years ago and was diagnosed 4 years ago as of Jan 2020. I havent had any issues with my immune system other than pmr. My worst issue is when I'm off pred. it takes mths of suffering before my blood varifies it. Also they tell me I have osteoporosis now.
ptolemy Grandmaann
Posted
The steroids suppress your immune system as the fact your immune system was overactive caused the PMR problem in the first place. Whenever I go to the surgery I always sit on the other side of the room from everyone if possible. I try and avoid January and February if I can. I also refuse to use that touch screen thing my surgery have to book you in, I go through the receptionist. My friends know not to visit if they have a cold or something.
rocketman42 ptolemy
Posted
Grandmaann -
I totally agree with you about avoiding all Fluoroquinolones ( Cipro, Levaquin, Avelox, etc ) if at all possible. The FDA has issued a strong black box warning regarding the fact that they may cause sudden, serious and potentially permanent nerve damage. In addition, the potential for tendon rupture is greater in patients who are on prednisone and should not be prescribed for those taking steroids or medications that treat arrhythmia.
The FDA said certain conditions made people taking fluoroquinolones twice as likely to have an aortic dissection, or rupture. The agency advised against prescribing such antibiotics to the elderly as well as to people with high blood pressure, peripheral artery disease, or genetic conditions like Marfan syndrome and Ehlers-Danlos syndrome. It should also not be taken by those with kidney or liver problems or patients with diabetes.
There are other antibiotics that can be used for a UTI and it makes no sense for a patient like yourself to take the risk.
rocketman42
Posted
Sorry...the above post was meant for Grandmaann ( should be an edit button available )
Grandmaann rocketman42
Posted
thanks for the information on cipro . i already have so many side effects and complications from the prednisone. waiting one more day and discussing with my Dr. sounds like a good option
Silver49 Grandmaann
Posted
I am assuming you are drinking plenty liquid to help flush out the UTI. You will still need an antibiotic but plenty fluids helps. It's not pleasant and I had a couple of UTIs when on Pred.
Guest rocketman42
Posted
Grandmann, Rocketman, and all else who read my response above regarding Cipro. WHOA do I ever stand corrected and educated and quite ignorant!
Thank you, Rocketman, for posting this info regarding Cipro and others in it's grouping. The amount of stuff my rheum has not told me about would fill a book. And I know we each must be our own advocates, but this is such a big unknown fact, I'm not sure I'd have found it without your help!
Thank you!