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Can't control a flare

Posted , 12 users are following.

Mrs_Hobbles
Mrs_Hobbles

Hello, I'd appreciate some advice please! Before Christmas I'd managed to reduce to 3.5mg pred since diagnosis of Polymylgia in April 2016 and GCA in August 2016. I'd had a few mini flares in the meantime which I was able to deal with but 3.5mg was definitely my tipping point and I haven't been to get things under control since. So to now and  I've had two flare-ups of GCA in the last 5 weeks, the first I increased to 40mg for 5 days and then back to 10mg. It flared again within a week obviously as it hadn't been hit hard enough with the 40mg, so second time I went up to 60mg for 5 days and then back to 10mg. Managed to get a cancellation with my rhumathologist on Tuesday, who I hadn't seen in about 10 months. He said I'd done the right thing by increasing but that 10mg was too low to go back to and so wanted me to take 20mg for a month, then go back to him. He also said if it flared in the meantime, I'd to get a blood test and get on to him.

I started the 20mgs on Tuesday but started to feel niggles on Thursday and yesterday with headache and extreme tiredness, which I was putting down to a very busy week. Sure enough this morning woke with my tell tell sign of severe pain across half my forehead and down the side of my face, a nasty 'dirty' headache, sore scalp, sensitive eyes, sensitive hearing and so tired. But of course it's Saturday, so can't either get a blood test or get onto rheumy till Monday.

So, my question is, what should I do now? I feel I need to increase for safety sake but to how much? I just don't know any more! I suppose the obvious thing is to go to 60mgs again and decrease from there (which is soul destroying having reduced to 3.5mg) but just maybe has to be done at this stage. It maybe worth mentioning that while I was at 60mgs, my eyes were under alot of pressure, very scratchy, sore, stingy and bloodshot, so it's not just pride stopping me going beck up I'm worried about the effects on my eyes!

As always any and all advice would be greatly appreciated, thank you!

0 likes, 26 replies

26 Replies

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  • EileenH
    EileenH Mrs_Hobbles

    Posted

    Late to the party - I'm on holiday and been travelling.

    Many rheumatologists tell GCA/PMR patients to carry 60mg with them in case of a flare to take immediately if they have symptoms to tide them over until they can see a doctor.

    What a shame to have a flare after 18 months - do hope it fades quickly. There is a trial in Dublin I think for another monoclonal antibody in GCA:

    http://ard.bmj.com/content/early/2016/05/03/annrheumdis-2016-209351

    Dlick where it says author affiliations to get the people involved and their departments.

  • Mrs_Hobbles
    Mrs_Hobbles

    Posted

    So an update on this morning's debacle!! I can't get a blood test till 10.30 on Wednesday morning, when I'll have been on 60mgs for 5 days, so what will show then is unknown and I can't get a message to my rhumy until tomorrow!! I'm decidedly nervous now because although I've been taking 60mg since Sat, (3 doses), my head still aches and my right temple has that hot, tender, painful feel. Wonder has anyone here taken 80mgs for GCA? I haven't been that high but am in limbo now and feel 60mgs isn't doing the job. Any thoughts would greatly appreciated, thank you 😊

    • ptolemy
      ptolemy Mrs_Hobbles

      Posted

      If you still have symptoms it is quite possible that you will have raised inflammation markers. Some people go to 80mg and even 100mg. I think the dose can depend on your build to a certain extent as well.
    • Mrs_Hobbles
      Mrs_Hobbles ptolemy

      Posted

      Thanks Ptolemy, even hearing that some people have gone that high is reassuring! It's not a choice I'd make lightly but still having the symptoms after three days of 60mg is a worry, although it has decreased a little by tonight and hopefully will continue but I've had more relief faster when if flared before! Hopefully I'll get to talk to my rhumy tmrw and see what he thinks. Thanks again for your thoughts😊

    • EileenH
      EileenH Mrs_Hobbles

      Posted

      Some specialists use intravenous steroids as a pulse therapy for 3 days - 100% of what you take gets there unlike the oral pred. Depending on the person only between 50 and 90% is absorbed which is why the dose needed is so variable. And some specialists will use much more than 60mg: "500 mg to 1 g of intravenous methylprednisolone per day for 3 d for patients with visual loss or a history of amaurosis fugax" is suggested in the medical literature.

    • Kdemers
      Kdemers EileenH

      Posted

      I was thinking of mentioning intravenous delivery but did not know the science of it.  Thank you, as always, for your precise information.  Do you know anything about the role of histamines in PMR or GCA?  Someone the other day mentioned it. 
    • EileenH
      EileenH Kdemers

      Posted

      No - I think I saw the post you mean and I have no idea what the connection could possibly be. I use antihistamines for a strange allergy to something in some red wines (as suggested by the immunologist. It works!) but I can't say I'd noticed it makes any difference to the PMR.

    • Kdemers
      Kdemers EileenH

      Posted

      Thanks.  I take an antihistamine every day--allergies, and I use a nasal spray.  What is key for me is if I am tending toward a sinus headache it does feel like my GCA coming on and I was never sure how to distinguish between the two. A second key for GCA for me is scalp and jaw pain.   I do think keeping sinus inflammation at bay is important for me.

       

    • EileenH
      EileenH Kdemers

      Posted

      Are they sure it is GCA and not another vaculitis?
    • Kdemers
      Kdemers EileenH

      Posted

      We have never been sure of anything.  Did you mean vasculitis?    
    • EileenH
      EileenH Kdemers

      Posted

      Yes - darn the lack of an edit! Must read more carefully!

      There is one form of vasculitis that affects sinuses - and responds better to other drugs. It was just a thought.

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