I have recently been diagnosed with lymes disease having developed a rash and gp prescribed doxycycline for three weeks, 100 mg twice daily. After one week on the drug, I’m feeling the way I did when I was first diagnosed with PMR six years ago.
I have been reducing from 3 to 2 1/2 mg with good results and even managed surgery on a broken wrist and two Astrazeneca jabs with no flares this year.
My muscles are really aching and stiff and I feel distinctly under the weather.
I no longer have a rheumatologist as I was discharged, despite still managing PMR.
I’m on holiday in Devon at the moment and would really welcome any feedback if anybody else has had this reaction to doxycycline?
Written by
Bobbikins
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I don't know about the drug, but aren't your symptoms common to Lyme itself? I think Lyme can be confused with PMR by inexperienced doctors - hopefully fewer of them now that Lyme is better known. I know the antibiotic treatment can go on for a long time, depending how long it was before you got diagnosed, and if you don't start to feel better I guess you'd better report it to whoever is managing your medical care at the moment. I think the doxycycline is supposed to be making the symptoms go away, not cause them, so I hope you can get some good answers somewhere.
There is a Living With Lyme Disease community on HU but it doesn't look very active.
Given the low dose of pred - it is possible that this could also be adrenal insufficiency poking its head above the parapet. Lyme and antibiotics can both stress the immune system and cause a flare of PMR if it hasn't entirely gone away.
Thanks. I’m reluctant to treat a flare with more prednisolone as I need the antibiotics to do their work. I was very lucky to find a gp who diagnosed it. It wasn’t the classic bullseye but a creeping very large reddish blue rash with a wavy edge and no other obvious symptoms.
I think the high dose of doxycycline is causing the muscle aches.
Always worth checking for tick bites when you’ve been to an area near deer. I was totally covered up but a tick managed to crawl up my leg and do it’s work nevertheless.
I realise you’re on holiday but I think you can call some numbers for advice from anywhere can’t you? Like 111? Just think you may need advice on Lyme disease. They thought I had it once following a tick (I live in a forest!) and remember there was a charity/society for the disease with lots of info? Lyme disease action I think it’s called, oh and I think I remember that muscle and joint pain were part of the symptoms. Good luck.
PS doxycycline has lots of side effects too, makes me very sick, for example. I find it a hard antibiotic to take, maybe read the pills insert? Hope this helps.
Doxycycline gave me an esophageal bleed, along with esophageal spasms, sicker than a dog, ended up in er. Can’t take the stuff, too fierce for me. My doctor said a lot of people react to it.
How awful for you! Sorry to hear that. I’ve had a constant headache, dizziness, exhaustion and muscle pains. One week to go and can’t wait to get off them!!
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rheumatologist locum visit for prednisone refill
Confusion over PMR flare or injury
Painful wrists and forearms 
New to PMR
This is all new for me.
