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  • #466246
    Karen tysland
    Participant

    I have lupus & dermatomyositis been on Antibiotic therapy 17 years. have been experiencing frequent urinary track infections, on my 3rd. Antibiotic Currently taking Cipro 250mg. Twice a day for 10 days. If this doesn’t work will have to see urologist. Wondering if long term use of antibiotics could cause this? There is an antibiotic resistant bacteria called C.diff that you can get from over use of antibiotics. has anyone on antibiotic therapy had this problem? Also wondering if anyone on antibiotic therapy has been vaccinated? county called for me to get COVID shot because I’m taking antibiotics for UTI they will reschedule my shot for 2 weeks.my husband will get his shot Monday. Wondering if low dose antibiotic therapy is a problem for getting covid shot? Will find out when the county calls back to reschedule my appointment.

    #466247
    Maz
    Keymaster

    Hi Karen,

    Long time – no see! Hope your lupus/RA remains in check in spite of a nasty UTI.

    This is just my fellow-patient take – diff bugs need diff abx and it’s possible it’s just a bug that doesn’t respond to Minocycline. An older relative suffers from chronic UTIs (no rheumatic issues) due to uterine, bowel and bladder prolapse. She had mesh surgery but the mesh broke and so now she has continual UTIs. She has had to get urine cultures and antibiotic sensitivity testing run because some strains of these bugs are resistant to certain abx (e.g., e-coli).

    Regarding C. Diff, another person I know was diagnosed RA in the summer and it was preceded by C diff. She’s a home care nurse and thought it was caught from a patient just out of hospital. She was worried she wouldn’t be able to use Minocycline, but her rheumy said it provided a degree of protection against C diff and, until it cleared up, there wasn’t much of anything else in the way of DMARDs he’d want to rx that might cause worsening, anyway. It’s been 4 months and her mild RA is now in remission on low, pulses mino and her C. Diff has resolved.

    Regarding autoimmunity and the new vaccines, the CDC has recently posted info on this:

    CDC: vaccination Considerations for People With Underlying Medical Conditions

    People who have autoimmune conditions
    People with autoimmune conditions may receive an mRNA COVID-19 vaccine. However, they should be aware that no data are currently available on the safety of mRNA COVID-19 vaccines for them. Individuals from this group were eligible for enrollment in clinical trials.

    Having spoken with my rheumatologist, he pretty much said the same thing. “No data yet for autoimmune patients, so each person has to assess risk-benefit in consultation with their doctor.” In his opinion, the risk of getting Covid is greater than the risk of getting the vaccine. Pretty much everyone though has to make this decision for themselves as each case is unique.

    I’m 60, so my turn for the vaccine won’t come up till late Feb/March. I am hoping more informative data is available by then.

    #466248
    PhilC
    Participant

    Hi Karen,

    You might want to try d-mannose. It’s a sugar that binds to the pili of the bacteria and prevents them from adhering to the lining of the bladder, so they get flushed away with the urine. The dose is 2 g once or twice a day. I bought 700 mg capsules and took 3 capsules once or twice a day. For quite a while I took it twice a week, but stopped because I no longer need it. Some people take it after sex to help prevent UTIs. I don’t know if it works for all UTIs, but it definitely works against E. coli.

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #466249
    Karen tysland
    Participant

    Thank you for prompt reply! spoke with internist he thinks I might be retaining my urine – forms a little pool. If this round of antibiotics doesn’t work will see urologist & have procedure to hopefully fix problem. I’m familiar with dmannose works great for E.coli unfortunately this infection did not respond well to dmannose, I always try that first before antibiotics. Karen

    #466381
    DianaW13
    Participant

    Hi Maz, it’s been a LONG time since I have posted here – just wondered if you have made a decision about the Covid vaccine. The vaccine rollout here in Canada has been TERRIBLE. However, they are opening up appointments for my age group starting tomorrow. I am not an anti vaccer, but I am always nervous about how my body will react to things – I have not had a vaccine of any sort for probably close to 30 years!

    #466382
    Maz
    Keymaster

    Hi Diana,

    Nice to see you and hope no news means you’re still in remission! 😀

    The ACR is recommending Covid vaccination for all rheumatics and has laid out guidelines, which are worth reading and discussing with one’s rheumatologist as each person’s situation is unique. E.g., certain meds may need to be paused or timing may need to be delayed if flaring, etc. As stated, the guidelines are a “living document” and are subject to change as more data is published.

    COVID-19 Vaccine Clinical Guidance Summary for Patients with Rheumatic and Musculoskeletal Diseases

    There is not yet any large-scale data on how rheumatics are faring post-vaccination in terms of side-effects and efficacy (different meds may affect both). Neither is there much known about the different types of vaccines in these regards. Anecdotally, some RAers are reporting lasting flares post-vaccination and others are fine and not experiencing much of anything that is different from the healthy population. The variables are likely vast – age, gender, genetics, diff vaccine types/adjuvants, disease status…

    The strange thing about this nasty virus is that there have been observational studies in hospital settings showing 50-70% of severe cases are developing various rheumatic autoantibodies (also noted in some outpatient long-Covid cases) and it’s still not really known if the virus is triggering autoimmunity or whether it’s a transitory post-infectious reactive state that will eventually go away or have lasting autoimmune implications. Likely, only time and study will tell.

    Here are a couple recent anecdotal case studies published in The Lancet – the first is the case of a lady who developed RA after getting the virus and the second is the case of a guy whose RA flared after vaccination:

    First Flare of ACAP Positive Rheumatoid Arthritis After SARS-Cov-2 Infection

    Flare of Rheumatoid Arthritis After Covid-19 Vaccination

    It is still relatively early days and one or two cases don’t mean the worst for everyone, but the hope is that short- and long-term data on rheumatic patient outcomes will become available over time.

    Potential alternatives are also in development:

    Pfizer’s New Oral Protease Inhibitor Could Possibly Treat And Prevent Covid-19

    My best fellow-patient takeaway from all this is that everyone needs to assess their individual risk-benefit with their doctor in order to make an informed decision. Co-morbidity risks (diabetes, heart/pulmonary disease, etc) are unique to everyone. I’ve been flaring this spring, so decided with my rheumy it’s wisest to wait till things settle down.

    #466383
    DianaW13
    Participant

    Thank you Maz, I will read up on links you have shared. This has been a hard spring for me also, mainly because the only brand of Mino available here now is Apo and I was forced to take that for about 1 year now. My arthritis (Lyme) has been there all along, but very manageable. My LLMD put me on Ivermectin a couple of months ago, it started to settle things down somewhat, but in the end, the mino is always going to be a problem going forward now. Hence I have started on Doxy and am feeling much better. I continue to pulse Doxy, Azithromycin, Flagyl and Ivermectin. Now, the Ivermectin is another story here in Canada also. The cost of the name brand is $300 for 36 pills (3mg each). I had it compounded MUCH cheaper – HOWEVER, it appears that it will no longer be available for human consumption going forward, only veterinarian. I was very fortunate, the pharmacy had a lot in stock and it was expiring, so they filled 2 prescriptions for me at the same time – we really don’t know here what will be happening with this drug, and I am not sure how long my doctor will have me on it. So there you have it, that’s where I am at. I am booked for the covid vaccine next Thursday (it will most likely be Pfizer, but MAY also be Moderna) I think in this case the vaccine is warranted – I have not had a vaccine of any kind for about 30 years! Here’s crossing all my fingers (and toes too, lol)

    #466384
    Maz
    Keymaster

    Diana, that’s such a shame about the lack of availability of what works for you.

    Two close family members have had their first Pfizer injection and both have had no ill-effects – one with RA. The booster may elicit more of a reaction, but to be expected. Another family member had both Moderna injections – first one fine and second one caused low grade fever, sore arm, and general malaise about 12 hrs after and lasting about a day. A couple weeks later, she developed a delayed hypersensitivity dermatitis-like rash on her neck and chest, but this disappeared after about a week.

    All the best for your appt next Thursday! Please come back and share how you do – rooting for you!

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