Antibiotics- help with aches?

[Portobello]

I have nearly completed a course of Flucoloxacillin (for a vaginal infection- pessary ring) and can't believe how much better I feel😊. Could the antibiotics be helping the PMR? And will this continue when I finish the course 🤞Beginning a taper from 4.5 to 4 tomorrow and feel really positive.

[PMRpro Ambassador]

I have heard people reporting feeling loads better while on antibiotics. A former colleague also told me his wife was diagnosed with PMR but pred caused too many adverse effects so the rheumies tried a long course of antibiotics and that worked well with no return of symptoms when they stopped them. I never found out if it lasted as I haven't seen him again - but was done in Budapest.

[Portobello in reply to PMRpro]

That's really I interesting. Thanks 😊

[SnazzyD]

Probably more like the loss of infection has helped rather than the Fluclox directly. Anyway, either way, it’s a win! Infections of the nethers are grim even without PMR. Let’s hope it stays that way but keep it slow in the excitement. I found some reductions were easier than others from 4mg for no apparent reason.

[Portobello in reply to SnazzyD]

Think I ignored the infection signs for too long 😩 So easy to put feeling out of kilter down to PMR/Pred. Will be taking tapering slowly. Thanks for your help.

[SnazzyD in reply to Portobello]

Yup, I’m sure many have been deceived by the Pred/PMR glasses.

[HeronNS]

I think infection can make PMR worse, even if it's not the actual cause of PMR. I've read of people who get very much better with PMR after an infected tooth is dealt with, for example. It will be interesting to see how well your taper goes from now on. Perhaps this infection was keeping PMR simmering that would otherwise have gone into remission by now? Whatever, I'm glad you feel so much better - long may it last!

[Portobello in reply to HeronNS]

Thanks Heron 😊 Hope I haven't done too much today- tidied the garage without having to take a nap. Rest day tomorrow!

[123-go in reply to Portobello]

That's the way to do it. Extra hour in bed tomorrow as a bonus!

[piglette]

I am on my fifth set of antibiotics and I don’t feel better at all. One of them was Flucloxacillin which I found very difficult to swallow and they really hurt my throat, so much so I had difficulty swallowing while on them.

[Portobello in reply to piglette]

Sorry to hear that Piglette. Yes, these capsules are large! I find they get stuck and I have to take a hot drink to move them down. Hope you find something that works for you soon. Often antibiotics make you feel worse so I've been lucky this time.

[piglette in reply to Portobello]

I think I am being given them as a just in case. I have just finished the clindamycin which had to be taken every six hours with a large glass of water, most inconvenient timing. They gave me the most awful taste in my mouth most of the time.

[krillemy]

I have all the PMR symptoms, but after 1½ year no diagnoses: Doctors say I am too young, normal blood work, atrophy of some muscle. I started on Doxycycline 3 days ago. 200 mg daily, just to see if it could be an underlying infection like Lime disease. After 1½ day my headache in the morning, tiredness and brain fog where almost gone! Still I have pain in hands and feet. Currently I am tapering down pred. from 15 mg to now 5 mg to “get more symptoms” for the doctors. I do hope that it is not a coincidence/placebo. Maybe some patients diagnosed with PMR have an underlying infection.....

[Portobello in reply to krillemy]

Thanks for your reply Krillemy. Pretty certain my PMR diagnosis was correct but I too wonder about an underlying infection in addition. Waiting to see if the positive effects last. Hope you get some answers. Best regards.

[PMR2011 in reply to krillemy]

You are not too young! I was 51 when diagnosed. And 20% don’t have raised markers. I hope you get answers soon.

[Sangu1]

some antibiotics are known to have immunomodulatory effects which generally help with reducing certain inflammation and also markers. Unfortunately, sometimes the markers slowly come back up. So, I think something triggers that PMR and wonder is ongoing infection is one of the things.

[Jan_Noack]

April/May 2004- 6 weeks of doxycycline tablets (I think took about 5 weeks of?), felt great. (tried in case I had Lyme but got it prescribed as a malaria prophylaxis as I was going to visit my son in Vanuatu for a couple of weeks. I took then and after. Stopped in England as teeth were going yellow..but felt great. Lost weight. walked , plenty of energy. looked good. So I stopped the doxycycline I think after about 5 weeks?..I wanted to take 6 weeks but teeth seemed yellow and seemed to be getting soft? Should have continued . I think the great feeling lasted as I started back at uni in July but by the end of semester was starting to feel bit Not so good.. It did continue for a couple of years gradually feeling more fatigued, noticeable by April 2006.

Let's put it this way. I had a car accident then in 2007, I was getting more fatigued, and more symptomatic.lots of things. way worse after..probably OMR as worse than I was supposed to feel apparently. (at least according to the insurance). then gradually worsening and finally diagnosed with PMR (which I hadn't heard of) in Nov 2016?

I did feel a bit better with many antibiotics as I kept coming down with infections especially in throat which would go to my lungs.. and since prednisone no more infections either?? I have no idea if I ever had Lyme..still don't know. but out of all the antibiotics doxycycline heloed the most. I had an infected tooth pulled which was infected since 2007 and sore from 2005? it as pulled finally in 2019 and di didfelle less PMR afterwards. the dental surgeons reckoned there was nothing wrong.. I had had it root cancelled in 2008.. but it didn't completely feel better... so much for dentists they kept telling me the pain was all just psychological or TMJ or trigeminal neuralgia (that was closer to the level).. but it was the root. I still have a tooth in from that may be similar..but again its' fine according to dentists. I still have some PMR..after 4 years of pred, but I am no longer getting chest infections and can now breathe easier? (I guess the pred).

anyway to answer your question, YES the antibiotic can make the PMR-like pain reduce and doxycycline is the best ..and what that means , heck I don't know.... but go for it!! and get checked for LYme ..all I got was it didn't exist in Australia only in the US..what the reality was was-- it had not been tested on Australian ticks, but we are sure to have a cousin that is similar (and i think we now have)...I haven't been following. So get tested for Lyme too if you can though I hear back then that the tests are not 100% accurate either.

[PMRpro Ambassador in reply to Jan_Noack]

The authorities appear to agree with you:

health.nsw.gov.au/Infectiou....

[Songbird69]

This is really interesting as it happened to me! I felt great after my antibiotic course - no aches or pains and the deathly fatigue disappeared. I had so much energy and felt like new!!

It took a couple of months and I was back to square one. ☹️

I had to take antibiotics on two further occasions and, each time, exactly the same thing happened.

I would love to know why that happened, but guess I will never know.

[Portobello in reply to Songbird69]

How interesting- and mysterious! So I guess I shouldn't get too euphoric 😟. Like you, it would be nice to be able to figure it out though.

[Songbird69]

Well if you do get to the bottom of it, please let me know!

[Greenacres]

Hi,

I have had the same experience more than once with antibiotics, once for a UTI and once with antibiotic cover for a procedure.

Also, last year, I was diagnosed with SIBO (small intestinal bacterial overgrowth) and treated with antibiotics for 2 weeks. I tried to explain the positive effect to the gastroenterologist resulting in a polite 'if you say so' kind of response. It was the same trying to explain to tbe surgeon after the procedure. Her explanation is that the surgery caused a bigger pain so I forgot about the lesser pain of the PMR.

However, the PMR improved each time, it's so hard to explain, but it's like walking through a door to feeling like your old self again. Unfortunately it was temporary.

Sorry to end on that note, I just wish these observations would lead to something helpful in the long term.

All the best

Sue

[Portobello in reply to Greenacres]

Thanks Sue. Disappointing that the improvement is likely to be temporary but fascinating that it's not just me. Definitely worth investigating I'd have thought- but who's listening to we mere sufferers😟

[Greenacres in reply to Portobello]

Yes, it is fascinating. Apart from the personal implications, I am so curious about what is going on. We need a curious clinician!