Liver Update -add on to Mino/Doxy question

[susanmary]

Hi All
I posted several weeks ago Feb I think “Sudden Liver Issues” I sort of wanted to re-assure Worldefom and comment on Maz, Ritchie.
I won’t go back through my long post “Sudden Liver Issues” it’s there if anyone wants to read it. I am VERY lucky and a TAD UNLUCKY.
I have my liver enzymes tested every 3 or so months since commencing “Mino” and we had added in “Klacid” – just 3 times a week 100mg Mino and 250 klacid. I had a WONDERFUL ,MARVELLOUS, STUPENDOUS outcome my arthitis, muscle, connective tissue ( I say this because my blood work always came back negative for all the usual suspects) pain went from an off the wall I can’t live like this (12 years sudden onset) to about 5 out of 10 ( with still the odd bad flare period) which for me was such a blessing.
SORRY digressing I am not asking for advice because I already had that from this great site)TRYING to be re-assuring !!!!!
After 106 weeks my liver enzymes ALL my liver enzymes went through the roof and we both panicked !:)

My doctor and I went through everything that enters my mouth (I have a very good diet no Gluten etc blah de da). We took out supplements out one by one – still no good and kept re-testing as we went – FINALLY reluctantly took out antibiotics and EVERYTHING returned to normal in 3 weeks. UNFORTUNATELY gradually pain levels went back up :(:(:(

I am trying to be re-assuring as this is relatively RARE and as Maz and Ritchie have so rightly said. I have been antibiotic free 3 months and we are re-trialing as Lynnie from Sydney imputed – sometimes things happen and then can be tweaked. My Doctor is not worried about me re-trialling – she is concerned that it might happen again as I seem to have a very UNGRATEFUL body :):):) HOWEVER if this does happen we will try a different antibiotic she definitely thinks its worth a re-trial because she could see the difference in me and the pain levels and trust me I had to present her with all the Resources and ppresent a case to get her to give them to me.

You can get Dile or Liver Induced problems from anything paracetamol, Mobic, Antibiotics LOTS of things BUT IT ONLY HAPPENS RELATIVELY RARELY – so don’t panic trial your Mino and keep DOING your blood tests it may NEVER NEVER happen to you. I always refused all heavier drugs and it still happened to me – some people are on a whole heap of things and it NEVER happens to them it’s the way it goes .

Also now I have updated the group on my return to normal liver and where I am at – and I will re-post as time progresses.
So don’t be scared just keep yourself monitored.

[Linda L]

Susanmary,
How long after mino/klacid did you start feeling better?
Best wishes,
Linda L

RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous

[susanmary]

Hi Linda
I hope I read your mail correctly – you are asking me when I noticed pain improvement once starting AP protocol ??? Looking back at my diary(which is a good thing to keep) it was a bit of a roller coaster,there were extra extra pain days – more than likely “herxing”.
My pain levels NEVER went completely BUT going downwards was hugely welcomed-SO I would say about week FIFTY FIVE was when I started noticing .
At APPROX week 68 we added in Klacid and I did get an extra shift – but still had flare times.
Last Christmas 2015 was probably the best since my onset 12 years ago,never NO pain but absolutely much more manageable:):):)

Feb this year 2016 was when I had all the liver issues( Nov tests perfect) BUT I didn’t have significant symptoms although I do remember being extra extra tired ( as I was a bad sleeper for SO LONG I took this as a blessing rather than a warning!) there were probably a few other little signs( in hindsight) but as I was feeling a fair bit better pain wise in fact I was feeling pretty ruddy HAPPY – I didn’t know there was an issue till the blood tests which just goes to show its good to keep monitored.

Hope this was what you wanted
warm regards
susan

[Linda L]

Thank you Susanmary. Yes, I wanted to know how soon you started to feel less pain.
Linda L

RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous

[Misty]

Hi Susanmary,
If you cannot take Mino at present you could try taking LDN it has immunomodulatory effects very much like Mino, without the antibiotic. I am still keeping my Mino on hold since AIP diet and LDN+ antioxdants have reduced my RA symptoms to minimal.Good luck.

Misty

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