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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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  • 757gal
    757gal Mrs_Hobbles

    Posted

    Save your eyesight and go to 60 mg until you can see your doctor and get blood tests to see where your inflammation is. 
    • Mrs_Hobbles
      Mrs_Hobbles 757gal

      Posted

      Thank you 757gal, it's really the only sensible thing to do, isn't it? Thank you for your thoughts😊

  • darlene36688
    darlene36688 Mrs_Hobbles

    Posted

    heI'm sorry you are having so many problems.

    This can be a miserable existence sometimes.

    Are you sure you don't have Giant Cell Arteritis?

    The symptoms you described makes me think you do. A headache, sore scalp, eye problems, hearing issues, fatigue. You need to be very careful with any eye issues.

    Unfortunately, the only way to treat this is the prednisone.

    I started out at 60mg., then 40mg.,then 20mg., and currently on 15mg. I've been on prednisone for 10 months.

    I started getting actemra infusions 3 months ago to help wean me off the prednisone. It has helped with the inflimation. Think the only place you can get this infusion is in the U.S.A.

    Check with your doctor about the GCA and go to your eye doctor about your eyes.

    Hope you will feel some relief soon.

    • darlene36688
      darlene36688 edward_80796

      Posted

      Do excuse me. 

      No need to be rude.

      This is a helpful site, not a put-down,  on someone.

      Somehow when I read Mrs. Hobbles note guess I missed the GCA diagnoses.

      I'm having a VERY bad day today & will leave it at that.

       

    • edward_80796
      edward_80796 darlene36688

      Posted

      darlene36688,

      I certainly wasn't trying to put you down or offend. I have made my share of mistakes which been brought to my attention but I never felt like I was being put down. I am truly sorry if I upset you or offended you in any way.

      Hope you get to feeling better soon.

    • Mrs_Hobbles
      Mrs_Hobbles darlene36688

      Posted

      Thank you Darlene, I'm so sorry that you've had to deal with all this too and it is interesting that you have had the same symptoms as me. I found the withdrawals with reductions SO difficult, so between that and the effect it has on my eyes, it makes me reluctant to stay on 60 for longer than the 5 days. My rhumey said there were other medications I could try but didn't say what it was. I wonder is it Actemra, I'm in Ireland so don't know if we can get that here!! I hope you're reduction continues successfully Darleen and you can stay well. Thanks again, I appreciate your thoughts 😊

  • ptolemy
    ptolemy Mrs_Hobbles

    Posted

    I know it is really depressing but as there is no one to ask I think I would go back to 60mg as better safe than sorry. You can then check on Monday, but at least you are getting the illnesses under control for the time being.
    • Mrs_Hobbles
      Mrs_Hobbles ptolemy

      Posted

      Thanks Ptolemy, you are right, increase and then check on Monday! I appreciate your thoughts, thank you 😊

  • Kdemers
    Kdemers Mrs_Hobbles

    Posted

    I was as high as 60 too----whatever it takes to keep inflammation down --maybe stay on  40 then 20 a few weeks. You do not want to lose eyesight and you don't want a mini stroke--which I had. Inflammation of vessels in head are not good.  GCA is so easy to recognize.  You listed all the  symptoms I experienced so perfectly.  Even the ears---yes! scalp--yes!  I had to stay in a darker room. We traveled from Albuquerque to Tucson with me holding my head not being able to look up.

    Don't worry about Pred right now...just take what you need...Good luck

     

    • Mrs_Hobbles
      Mrs_Hobbles Kdemers

      Posted

      Thank you Kdemers, you've been through alot too!! You had a mini stroke! Did you get the stroke before taking pred or while on it? So scary, are you ok after it? I can't even imagine having to travel feeling like this, that was a herrendous journey!! Even the noise from a paper bag is so harsh, road noise and movement would be awful! I did increase to 60mgs today but am still having ripples of head pain all day, it really scares me and I feel rattled that it even came back AGAIN!! Thanks for telling me what's happened for you, I appreciate it so much and much as I'd hope nobody would have GCA, it is comforting to hear other peoples stories. I hope you stay well😊

    • Kdemers
      Kdemers Mrs_Hobbles

      Posted

      I did not know when I had the stroke but my Doctor and my daughter's father-in-law--a Dr. decided that maybe I should have and MRI just to make sure my headaches were not caused by something else.  I made sure all results were sent to my doctors and they all called me the same night to report a small lacunar stroke.  a year later  I had a 2nd MRI  and  could hardly tell I had had the stroke.  Put me on baby aspirin--which I already took.

      When things were worst I had blood work every 3 weeks checking C-Reactive Protein and Sed rate.  I kept a chart, along with the mgs. of Prednisone.

      It will get better!

      I started with PMR in 2013  --GCA in 2015---this last year I have had no real flairs. Down to 3 mg Prednisone.  and hope to go below that

    • Mrs_Hobbles
      Mrs_Hobbles Kdemers

      Posted

      Wow, that must've been a shock to discover that you'd had a stroke, but so fantastic there's no longer any trace of it! The very best of luck on you're reduction journey and then you so much again for your advice xx

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