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Posted , 11 users are following.

linda04580
linda04580

Just saw my rheum.  She is diagnosing PMR and GCA due to positive response to steroids 60 mg last two weeks.  

We are going to go down by 10 mg every 2 weeks til at 20 mg then slower from there if symptoms I go back to the previous dose without symptoms... added bactrim 3xs a week to prevent infection, added stomach protection.. and calcium and vitamin D

Does this sound about right?

1 like, 32 replies

32 Replies

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  • Anhaga
    Anhaga linda04580

    Posted

    Why would you be prescribed an antibiotic? 

     

    • sandy08116
      sandy08116 Anhaga

      Posted

      Wondered about this too. 'Minimise unnecessary prescribing and overprescribing of antibiotics. This occurs when people expect doctors to prescribe antibiotics for a viral illness (antibiotics do not work against viruses) or when antibiotics are prescribed for conditions that do not require them'.

      Linda, I would follow my doctors' advice - keep away from people with infections. None prescribed 'just in case' antibiotics. 

    • EileenH
      EileenH sandy08116

      Posted

      Apparently it is now usual practice in the UK for vasculitis patients with positive ANCA - because they commonly have bacteria in their nasal passages and can develop all sorts of things. But it isn't done for GCA as far as the expert I asked knew. 

      I can see the point there - but I'm sceptical in GCA. No doubt someone thinks it is useful.

    • linda04580
      linda04580 EileenH

      Posted

      I’m in the US, the UK is a better authority on this subject.  Thanks
  • BettyE
    BettyE linda04580

    Posted

    Not qualified to give medical opinion but from my personal view I would say that sounds pretty good.

    My highest ever was thirty but I only had PMR   

    Those steps are more or less what I was given and it's really good news that you've been told to up the dose if symptoms return. So many on  here have suffered from the set in stone reductions type doctors and it just does not work like that.

    I could not tolerate Alendronic Acid but my bone density was very good even after 8 years of Pred. altogether. I was prescribed Calceos which is Calcium and Vit D. I have also taken CLO for years.

    Best wishes.

  • Michdonn
    Michdonn linda04580

    Posted

    Linda04580, I would do a modified DSNS taper when you start reducing, I have been using it from 25mg and think it is a great idea. Thinking positive and smiling. 🙂

  • EileenH
    EileenH linda04580

    Posted

    I'm somewhat surprised at the Bactrim - never come across that being used in GCA. I think that is overuse of an antibiotic IMHO.But otherwise - seems fair enough.

    • linda04580
      linda04580 EileenH

      Posted

      She said it is for PJP prophylaxis, she seems to be pretty up to date.  Doesn't want to use asprin I have stomach ulcers as it is My stomach is a wreck.  She increased my omeprezole to 2x a day.  PJP is Pnuemocystic pneumonia?  One of those opportunistic things.  Maybe because I am a nurse and exposed to a lot of germs?  I will ask the rationale regarding antibiotics again, because I do not want to be on any more pills than absolutely necessary.  My stomach is a wreck already.  Thanks Eileen

    • Anonymous111
      Anonymous111 linda04580

      Posted

      Bactrim (septrin in the UK) is for PCP (a rare type of fungal pneumonia, famously seen in A(DS patients).

      The rationale is presumably the hefty Pred dose.

      It probably is a little bit overcautious. They put haematology patients on Septrin, Miconazole and Aciclovir for prophylaxis when they’re on chemo, because they’re so immunosuppressed. 

    • EileenH
      EileenH linda04580

      Posted

      Can't be that up to date - aspirin is no longer recommended for use in GCA. Ben has already said what I was going to say. I think she is being a bit OTT - and I have known a LOT of patients on equally hefty doses of pred, some even higher.

      And on that sort of dose of pred - perhaps some sick leave is in order? High dose pred is well known for affecting judgement and memory.

    • linda04580
      linda04580 EileenH

      Posted

      I would love some sick leave.. but I’m the main bread winner for my family

      And have no more sick leave.

    • linda04580
      linda04580 EileenH

      Posted

      She mentioned that aspirin was controversial, I was the one who had asked her about it, but she said she wouldn’t want to cause more stomach problems than I’ve got without some great benefit...  I am going to ask if the antibiotic is necessary... if I wind up not able to work we won’t be able to afford this home would have to move etc it seems less stressful to work than try to face all that.. til I just fall over I guess then no choice sad probably not the best plan but it’s all I got right now
    • sandy08116
      sandy08116 EileenH

      Posted

      No aspirin? Really? I am still taking those teeny heart-shaped ones. Must ask at next visit. 

       

    • sandy08116
      sandy08116 linda04580

      Posted

      Oh dear, I hope it gets resolved, Linda. What works well for one may not for another. You can trust your rheumy but I would ask her to share why certain drugs are prescribed, how it responds. 
    • Anhaga
      Anhaga sandy08116

      Posted

      Are you taking low dose aspirin for heart?  Just be careful to protect your stomach with food and fluid.  I still use aspirin for headaches and am very careful and, touch wood, no problems.
    • Michdonn
      Michdonn sandy08116

      Posted

      sandy, I am still taking my 81mg. Everytime I see the doctor I get asked and I tell them, yes! Nobody ever says to stop! Smiling! 🙂

    • EileenH
      EileenH Anhaga

      Posted

      81mg is the dose of adult low dose aspirin as used to prevent heart problems.
    • sandy08116
      sandy08116 Michdonn

      Posted

      Just for argument's sake, I checked the packet. Aspirin 100mg EC (MUL). 

      I asked GP and Rheumatologist if I should continue and both said yes. Not sure if it's the Pred or Aspirin that is giving me paper thin skin. 

    • BettyE
      BettyE sandy08116

      Posted

      I'd bet my house it's the Pred. There was a time while I was on Pred. ( eight years altogether ) that I only had to brush my arm past a leaf and the skin would tear. Also I had to make sure that the Practice Nurse did not use adhesive tape to anchor the dressing after taking blood. It would literally tear off a strip of skin when I removed it. Also had some impressive bruises; looked as though I'd been beaten up.

      Good news. Off Pred. for more than four years and skin back to normal. I think it took about eighteen months.

    • Anhaga
      Anhaga EileenH

      Posted

      Oops, just assumed he was talking about pred, wasn't reading all the preceding posts!

    • lilian05079
      lilian05079 sandy08116

      Posted

      Hi sandy08116

      I agree with BettyE. When i was on pred, not as long as BettyE, my skin was sooo thin i could almost see the blood pumping through my veins. Like BettyE i'm off preds and my skin is back to normal after 10 months....best wishes to you sandy08116....

    • EileenH
      EileenH sandy08116

      Posted

      As Betty says - probably the pred. OTOH, I've been on pred for over 8 years and my skin is still pretty tough. I develop peticheae but only if I scratch old ones in 2 or 3 specific places! Bizarre! 

      But I use no soap on skin other than hair shampoo - soaps (anything that causes a foam) take the natural oils from the skin and dry it out making it delicate. Moisturisers don't do the same job. Doublebase or Diprobase can be had on prescription in the UK but isn't very expensive to buy and that well known supplier beginning with A can deliver it to the US - so if you (or a friend) have Premium it doesn't cost a lot. Everyone I know who use them swear by them.

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