antibiotics and lupus

[kelani11]

Hi

I have been diagnosed with lupus and take pacquenil. The winters are tough and I took penicillin am and pm every day. Felt great and did not have a flare up.

My rheumatolist is very closed minded and had a explosion.

I do not know if I should choose another Doctor.

[Sara_A]

I don't really understand? What were u taking the antibiotics for? And who prescribed them for you?

[kelani11 in reply to Sara_A]

they were initially prescribed from a dr on call I felt so much better I stayed on them.

[Bronagh2015]

Antibiotics are really not your friend if you have Lupus, they should only be prescribed if ABSOLUTELY necessary.

[kelani11 in reply to Bronagh2015]

why are they not my friend?

[Bronagh2015 in reply to kelani11]

We need to keep antibiotics for bacterial infections which are dangerous to us and which we are, unfortunately, more likely to develop than a healthy person. This is in the majority of cases the only time we should take them so that we don't become immune to them, in other words keep them for when really necessary. My GP wouldn't prescribe them for me without doing bloods first to make sure I have an infection and even then likes to check with my Rheumy.

[Wendy39]

Hello. Like the other replies, I too am curious about who prescribed antibiotics for the whole winter for you. I have gone from one cough and cold to another and then to a week long S&D bug and then back to the cough. But no extra meds from my GP. Antibiotics are not used to treat lupus but other infections like UTIs or chest infections. I think I know of one person on here who takes antibiotics daily, due to having serious UTI issues. But that's not the norm for lupus patients. Where abouts do you live? Paul from Lupus UK who administers this Health Unlocked site can advise on rhuematologists and where the lupus centre of excellence are. I'm sure he'll respond on Monday. Best wishes.

[Barnclown]

Hello Leland. I'm with the others who have replied: please give us more info

I'm especially interested because I'm 63 & have infant onset lupus. But daily treatment with prescription lupus meds only began 6 years ago. About the same time, Rheumatology discovered I have problems with my bone marrow giving me an early onset Primary Immunodeficiency alongside the lupus. This immunodeficiency explains why I've been prone to complex persistence pattern multisystem infections all my life. So rheumatology referred me to immunology who have prescribed daily antibiotics indefinitely (I take the penicillin mix called coamoxilav or augmentin). I've been on this regime for almost a year now. Both these daily antibiotics & my daily lupus meds (hydroxy + myco + pred + amitriptyline) are helping me greatly. But, of course, I wish I didn't need all these meds at all 😏

Hoping you'll tell us more about yourself

🍀🍀🍀🍀 coco

[kelani11 in reply to Barnclown]

Hi Coco

This winter was rought and I experienced cough, earaches and joint and muscle pain all over. The Dr. on call prescribes antibiotics and I stayed on them. The rheumatologist treated me like I was trying to do her job. I just wanted to feel better

which I do. I am research if antibiotics affect bone marrow or have bad side effects besides super bugs

[Joyandsleep in reply to Barnclown]

Your illness is complex. Chronic strep or other diseases may require extreme measures. Its good to get a second opinion if you are worried. Augmentin can be hard on the stomach so check with your doctor if your tummy hurts at all.

[Barnclown in reply to Joyandsleep]

Oh boy do I know my versions of immune dysfunction & Connective tissue disorder are complex! And thank you for acknowledging this, joy.

I am very lucky to have been able to thoroughly study & research my investigations, diagnoses and treatments with the help of my knowledgable friends here and also brilliant consultants at my international university hospital. I understand the risk/benefit ratios of all my treatment plans....and I conscientiously use lifestyle techniques to help myself (e.g. Take probiotics etc). At 63, I am just glad to have spent at least 6 years of my tortured life feeling better generally than I have since childhood when I was innocent and less worn down by illness

I was born with internal reproductive organ defects due to 5 months of daily inutero exposure to to the notorious endocrine disrupting artificial oestrogen diethylstilboesterol (DES: scandalously prescribed to prevent miscarriage at the same time thalidomide was prescribed) which we believe combined with my genetic predispositions to tip me over into my contradictory combination of autoimmunity + Immunodeficiency.

I was diagnosed with lupus as an infant, but my mother & doctors kept this a secret from everyone including me. I just though I was "sickly". So, when I moved to the uk at 21, the NHS took me on unaware of the serious complex illness underlying my constant health issues including severe persistent infections.

Finally 6 years ago, in my mid 50s, my multisystem debilitation had progressed to the point where a brilliant rheumatologist finally recognised the underlying lupus and hypogammaglobulinaemia + lymphopenia and started the treatment plan that has given me true quality of life

So, I know my story is complex & unusual. But, after 6 years here, I suspect there are many on this forum with stories just as complex & unusual as mine...they just don't know the details, whereas I am extremely lucky to have been able to learn so much about my background

Of all the long term oral antibiotics I have taken over the decades, augmentin (coamoxiclav) agrees with me the most. I feel extremely lucky, because without its help and the close attention + care given me by immunology clinic, I probably wouldn't be here. In my case, the alternative to daily antibiotics is IVIG, which on the whole I am hoping to avoid...but my story isn't over yet: who knows what the next chapter will bring...

As you can see this subject is close to my ❤.

Wishing you all the very best

🍀🍀🍀🍀 coco

[Cas70]

Change Doctors asap! Research for someone.

[Joyandsleep]

Flares up will often occur after a bacterial infection. The fact that you were not sick means your immune system was not stimulated by a bacterial infection. Your intestines would probably appreciate some acidapholis (heathy bacteria) I probably spelt it wrong.

[Lucy_31]

Hi I tend to have a flu jab every October as opposed to taking medicine daily and this seems to work. The risk with penicillin daily is when it is needed it may not work. Could you ask about this for this year? Your gp should give it to you.

[Paul_Howard Partner LUPUS UK]

Hi kelani11 ,

Did you present with symptoms of an infection such as a fever? If it was an infection causing your symptoms then that may be why the antibiotics helped. They would not treat your underlying lupus.

Have you spoken with your GP about your course of antibiotics? Are you still taken them or have you now stopped? It is important to bear in mind some of the comments you have received from other members of the community here.

If you are unhappy with your current patient/doctor relationship with your rheumatologist, it may be worth asking your GP if you can be referred to someone else. You can find more information about having a good relationship with your medical professionals and changing doctors in our article here - lupusuk.org.uk/getting-the-...