My PMR Story. : I am 72 now. After my gp diagnosed... - PMRGCAuk

PMRGCAuk

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My PMR Story.

Lanakay profile image
16 Replies

I am 72 now. After my gp diagnosed me with bursitis, yes, a bakers cyst, sent me to physical therapy and a number of other ailments he decided it was PMR and prescribed 20mg prednisone. (10 twice a day). It was a miracle. I felt soooo good. I had just been thinking at my age I was just going to hit like this. That was in September of 2017. One month later my neck was puffy and my face was beginning to be puffy. He apparently did not know the side effects of prednisone. He stopped me taking it immediately. I had not yet found this forum so didn’t know any better. He stopped the prednisone and said we would have to wait a month and if the swelling wasn’t gone run tests. The next couple weeks were hell for me emotionally. After about 2 weeks I went to a rheumatologist. Who started the prednisone again at 15 mg. My mental state was terrible. He also prescribed lorazepam 1 mg for my anxiety and I went to a geriatric psychiatrist who prescribed mirtazapine for sleep. Somehow with the help of this forum I have muddled through. I was down to 6 mg but after my hospital stay for a perforated colon I have gone back up to 7mg. Overnight, maybe from the antibiotics, my knees are swollen and painful. Steps are hard but on the level is ok. Also my shoulders are really painful especially the left on. Thanks to everybody here that I have made it this far.

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Lanakay profile image
Lanakay
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16 Replies
Linny3 profile image
Linny3

Oh My it sure sounds like you are having a lot to deal with. I can't imagine being without the prednisone.

Sounds like you are on the right track to manage the pmr.

Good Luck

alvertta profile image
alvertta

So awful you had the wrong doctor. Glad things are getting better.

PMRpro profile image
PMRproAmbassador

You would think a GP knew what pred does and how to use it a bit better wouldn't you! You were lucky when he stopped it cold turkey at that level.

Lanakay profile image
Lanakay

Thank heaven I have found doctors who understand PMR. My first rheumatologist retired after a few months. But that was ok. He’s the one who wanted me to try plaquinil and something else and mentioned seronegative arthritis. This forum is so helpful in pointing us in the right direction. I am satisfied now that my doctors are listening and understand PMR.

YuliK profile image
YuliK

Lanakay , You poor poor soul. Shocking really shocking what you have been through ..your doctor is an ignorant quack. My face was like a huge moon and I was blessed with a buffalo hump. ( back of my neck ). Due to Prednisone

Stick here with this forum Dear, and I can assure you, that will receive the best advise ever.

May I ask you which anti-biotics you are taking? Sometimes the anti-biotics can react with Prednisone...

My knees are sometimes puffy too. Maybe you are drinking more than usual and not very active. ?

YuliK age 76

Ps. 1/2mg reduction of prednisone for one month at least

Lanakay profile image
Lanakay in reply to YuliK

I have a new doctor. He is younger and very thorough. He takes his time. The antibiotics were levofloxacin once a day and metronidazole 3 times a day. These were prescribed by the doctors at the hospital. I had a perforated colon with an abscess.

PMRpro profile image
PMRproAmbassador in reply to Lanakay

Levoflaxacin is not a good idea with pred, especially methyl prednisolone. It can lead to achilles tendonitis so do watch out for any discomfort in your achilles tendons and see a doctor quickly if it does happen as when they are inflamed they are very delicate and just tripping can damage them badly. I happened to me and I spent months in a support boots and on crutches until it cleared up. You probably did need the levoflaxacin but it shouldn't be used for simple infection - because the side effects are quite serious.

YuliK profile image
YuliK in reply to PMRpro

Exactly what I thought. I hope that Lanakay's doctor understands the problem. I think she should mention this to him

PMRpro profile image
PMRproAmbassador in reply to YuliK

Mine didn't!

Lanakay profile image
Lanakay in reply to PMRpro

Thank you for your reply. I did see all that in the side effects. I took my last dose last Sunday. Thank heaven! I think the strong antibiotics were prescribed because of the abscess in my colon. So far so good. Had a follow up with my gp yesterday. It went well. He had ordered a pulmonary function test awhile back because I always feel a bit breathless. The results of that were fine. Monday was my routine mammogram and on my way home from the gp the mammogram people called and said I need to go in for an ultrasound on Tuesday. I’m not overly concerned as this has happened several times before and it’s always been ok. I’ve seen more doctors in the last year than I’ve seen in my whole life!!!

PMRpro profile image
PMRproAmbassador in reply to Lanakay

Oh yes, you were on that antibiotic because you needed it - but do keep an eye out because the effect persists for some time.

Lanakay profile image
Lanakay in reply to PMRpro

I definitely will! Like most of us here, I don’t need any more troubles.

cmybabyblues profile image
cmybabyblues in reply to Lanakay

Hi. I was just reading what you wrote. I am glad you are doing better. Would you know of any rheumatologists in New York New York. Thank you

Lanakay profile image
Lanakay in reply to cmybabyblues

Sorry, I don’t. I’m in Nebraska, about the middle of the USA.

OutdoorsyGal profile image
OutdoorsyGal

On the subject of antibiotics, I was just prescribed BACTRIM for a UTI, instead of Cipro, which I used to take. I’ve read about terrible tendon issues with Cipro, and when you have PMR, you already have dicey tendons! Fortunately my doctor’s UTI protocol has changed to make Cipro a drug of last choice rather than first, even for those without PMR.

Lanakay profile image
Lanakay in reply to OutdoorsyGal

I think the drs used the antibiotics they did because an abscess on the colon can be hard to treat.

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