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Newbie introduction GCA only

Posted , 11 users are following.

LisaCACO
LisaCACO

like a billion people have said before, I am so happy to have found your site. I'm 53 and was a happy active person who went to the gym 3x a week (though plump), an organic dairy free vegetarian, blah, blah, blah. This Christmas 2014 my 10 year old has the flu, I get what i think is the flu and boom, that's the end. she notices a bump on my left temple and for some strange reason I actually went to the doctor, probably because the headache i have isn't at all like my normal migraines. December 30, the doc says, "steroids and biopsy now", so Jan 2 2015 I went into surgery. Confirmed GCA. Steroids have hit me hard. Within I couldn't walk. Acute Corticosteroid-induced Myopathy, severe Reflux and inability to eat, racing heartbeat, and about 20 other side effects. I'm now on a smoothie diet. Working on my own and with a PT, I'm now able to walk a bit. Dietician has helped with the smoothie. GCA pain is still coming and going, but the prednisone has triggered some neuralgia/neuritis so that every single nerve is flaired on my head, left and right side. So the doctors have prescribed Gabapentin, an awfully "fun" drug. Tremors, shaking, hard to focus, eye problems, on top of the prednisone issues, yes, I'm a mess. Fun, fun, fun every day! Oh and both cause edema, sleep issues, memory issues. I'm lots of fun to have a conversation with these days. 

I was on a 60 mg dose of prednisone which was raised to 80mg due to the continuation of symptoms. My Rheumatologist has decided to lower the dose to 60mg starting this weekend and boy, has that been fun! yesterday my legs wouldn't work up and my head hurt. today, just the head. we'll see what she does. She's not really sure what to make of me, as I seem to be falling apart faster than the average patient. Her plan is just to get me off the steroid asap, 9-12 months. We americans are always in a hurry wink. My focus now is monitoring the many side effects that seem to be cropping up (the latest is phantosmia) and dealing with the tapering and its effects. And also dealing with the loss of me. My 10 year old has named the new person who has appeared "Martha". She 80 years old, white of nordic descent (I'm black of mixed descent) and she's not much fun. we liked the old mom, not so much this new mom. I'm sure Martha's fun in her own way, but her sudden appearance has been a bit of a shock to us all. And my husband has been a trooper. He just recovered from his own heart issues this past fall, which I suspect was the stress trigger for me. 

well that's my story. I look forward to reading as many posts I can and sharing information. Things are bit different here in the states, which is probably good. I can learn a lot from the way you folks are organized in groups. no groups out my way in Colorado. Look forward to meeting all of you!

2 likes, 32 replies

32 Replies

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  • LisaCACO
    LisaCACO

    Posted

    many thanks for the warm welcome. you folks are quite smart and right on. my Rheumatologist has just decided via a text that jumping from 80 to 60mg wasn't so bright since my symptoms just popped back up.  Pretty hilarious since it was my first attempt to taper. Guess this is going to be a very slow process. I did mention to her that i didn't think 9-12 months was particularly realistic for me when she first mentioned it, but hey, she's young and she has a plan! we're going back up to 70mg for a bit and hoping the symptoms disappear. 

    she's also suggested the possibility of changing steroids, but I'm not so sure. Prednisolone and Methylprednisolone seem like I have to start all over with side effects, and frankly, I really, really, don't think my body has anything left for that. 

    I think as far as patients go, I'm going to be a disappointment for her wink. 

     

    • tina-uk_cwall
      tina-uk_cwall LisaCACO

      Posted

      Yes lisa, I think so too. Some drs are so scared of all the side effects of prednisone that they will either taper us off too quickly, then we have another flare up, then we go back up a dose and the whole process starts all over again, but this time with an even longer recovery period because of the flares and subsequent longer periods on higher doses. 

      Or, they attempt to introduce other steriod sparing drugs that often have even worse side effects than the prednisone and once again our bodies are thrown into turmoil as it attempts to adjust to the new mixture of drugs. I say until they find a cure, stop mucking about with us. Leave us on the prednisone, which by the way is the only anti inflammatory drug that effectively works and let the condition burn itself out. Because at the end of the day the condition controls us as it will burn out when it's good and ready and not a second before. I like you am very single minded. I'm staying on prednisone until the end. Have a read of the Bristol PMR plan, just google it and read about how the condition should be approached and how it is approached by the real experts. Regards, christina 

    • EileenH
      EileenH LisaCACO

      Posted

      Changing to what other steroid? If you are now on prednisolone changing to methylprednisolone isn't so different but there is the potential for even worse side effects for some people. I know a lot of Americans are on it but it isn't used much in the UK.

      I live in Italy now and was switched from prednisolone where I had had few side effects except weight shifting to my middle, I didn't put on much weight, that had already happened in 5 years of PMR beforehand. With Medrol I put on loads of weight, grew a beard, my skin and hair went mad and I also suffered muscle wasting - I really struggled. That all started to go when I was put onto a form of prednisone which is the only other alternative here. Plus the Medrol didn't work, even at 20mg which is a high dose for PMR.

       The basic rule of thumb for reducing pred in GCA and PMR is "never more than 10% of the current dose" - and it was US rheumatologists who proposed it originally. It is a good rule at any dose level. 80/70/60 will work far better for you and if it is still too much, reduvcing in 5mg steps will achieve more and faster if it works than taking 10mg bites that don't work and you have to return to the high dose. It can take more than 6 months to get rid of all the signs of GCA inflammation with doses at over 20mg - try to rush at any stage and you will be back at higher doses again.

    • LisaCACO
      LisaCACO EileenH

      Posted

      I'm currently taking Prednisone. she's suggested Methylprednisolone or Prednisolone as alternatives. Apparently some people have had fewer side effects (she says) on these steriods, though she admits it's anecodal and not scientifically based. 
    • EileenH
      EileenH

      Posted

      They are all basically the same - prednisone is what is called the precursor of prednisolone which is the active form.Prednisone is processed by the liver to make prednisolone so starting with prednisolone probably achieves a faster onset of action of each dose and it also puts less strain on the liver. 

      I've been on all three, for me the fewest side effects are with the prednisone I'm on at present although prednisolone wasn't bad either.  Each of us is different so if the prednisone is giving you problems maybe trying something else might improve things.You can't tell until you try after all. I am fine on prednisone, someone else may find it bad. I hate Medrol, others I know have had no problems. It isn't as if they are different drugs like with blood pressure medications - all three of these are corticosteroids and very similar. 

      But for the moment she needs to let the medication do its work without messing you about with fast reductions. GCA is not nice, it can cause blindness and a few other nasty things if it isn't controlled and that is the most important thing at the moment. Pred isn't nice either in some ways - but it does prevent the worst effects of GCA

       

  • Guest
    Guest LisaCACO

    Posted

    This is my first entry and thank you  Lisa for your discussion. Your trip with GCA has been simply awful but now I have a little better idea of what to expect. In mid February 2015, I began having a stiff neck and couldn't open my mouth easily. Then pain slowly built all over my head so I went to the ER (emergency room) where I was given codeine derivative for pain. One week later, my doctor gave me a muscle relaxer. Finally I ended up in a tiny ER near my home in Virginia, USA with a fever, total jaw closure, and the worst headache possible (had never had much of a headache in my life and I'm 68). My sed rate was 95 which thank goodness clued the good doc to start IV prednisone. She also ordered a temperal artery biopsy...came back positive, the first positive the surgeon had had in thirty years! I did suffer a second round of headaches because two docs decided to cut the pred from 60 to 30 milligrams before the biopsy results came back. Just last week, I saw a rheumatoligist  for the first time. Bingo, I have now read everything I can find on the internet and the rheumy has a plan of action for me. I love the writer who said we have to slow this down, take one day at a time because most of us are in for the long haul. Here are my questions. At my current level of 50 mil., can I be around people? My immune system is compromised, right? I am walking plus using a treadmill when I can to help bone loss but I cannot taste food but am eating too much anyway. I cannot sleep for more than an hour or so but do have a little pill to help when needed. The fatigue factor is the worst and my face is so swollen up. On the other hand, I am trying to act as normal as possible but burst into tears for no reason! Lisa, I too have a saint of a husband who explains that he'll get to know his old wife in about a year or two.

     

    • EileenH
      EileenH Guest

      Posted

      Hi Ann and welcome - what a lucky GCA lady, a POSITIVE BIOPSY! At least noone will argue with you in the future as to what you had/have. And that, believe me, is a massive start.

      Most of the ladies I know with GCA didn't avoid normal life. I wouldn't go to visit someone with a rampant infection but most normal activities shouldn't pose a problem. I actually had fewer infections whilst on pred although I was never as high as you are and I know others who say the same. It is more needing to be careful if you DO catch something - it may take longer to get over or you may need antibiotics for a chest infection. Don't put off going to your GP if you are ill - but it is just in case rather than you are about to keel over. I would say that your immune system is probably OK but the pred may slow it down - as opposed to your immune system being shot and unable to respond.

      The hamster cheeks and emotional outburst are pred - they should improve as the dose reduces, though it will be a while I'm afraid. The key is to rest as much as you possibly can - it isn't just your temple artery that is affected, your entire body is and it is a serious illness even though you can't see much.

      How very naughty to reduce the pred dose before the biopsy result was back - if you are that suspicious you at least give it a chance.

      Anyway - have you found this lot of links?

      https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

      There will be people about with GCA, few and far between it is fair to say, I don't know if Lisa is still following the forum but there are others to share experiences with. Ask any questions - we'll do our best to answer.

    • janet08828
      janet08828 Guest

      Posted

      Hello Anne - you are at the beginning of what I am afraid will probably be a long journey.

      I started with GCA 2,5 years ago - just like you, all of a sudden out of the blue you find yourself involved with a new life full of new terms, new medicines and a bundle of confusion.

      If you are like me you had never heard of GCA -neither have most of the people who are concerned for you and ask what is wrong with you.

      Finding this forum has brought me an understanding and given me confidence when talking with my rheumy - I feel that I have more knowledge and can ask the right questions.

      I have had a hard time getting the dose of prednisolone down, I also take methotrexate although there are questions as to whether it helps at all. Now I am down to 10 mg. prednisolone (with fingers crossed that it holds this time so I can take the next reduction!)

      Once you get into the rhythm of prednisolone after the initial high dose you will probably land on 20 mg for quite a long stay before starting a reduction plan - don't worry although the side effects are a pain - I also have a "moon face" and a weight gain that I have at the moment managed to stabilise - you will probably get tired - if you do just stop and have a rest or a nap - whatever you feel helps.

      After the first three months I started back at work and I haven't had any problems with infections, at no point did I do anything to lock myself away from people.

      That is all I can tell you really - we are all different.. like us - we both have GCA but I am fortunate in that I don't have it in my head for which I am very grateful - sounds dreadful!

      Hope there is something useful for you here - just don't think that this is something that just goes away - that is one of the things I had the hardest time getting my head round - a chronic illness is - well chronic!

      Good luck

    • Guest
      Guest janet08828

      Posted

      Thank you Janet for such a thorough response...I need support now to get through this first phase. I need to go out and not fear getting sick. The thought of even a cold on top of the misery is overwhelming! But lunch out with friends is more important. One thing I left out. My rheumy has taken me off sugar as much as possible since diabetes is a huge issue..did you find this to be true? Ann11195
    • EileenH
      EileenH Guest

      Posted

      There is a lot of suggestion that cutting processed carbs of all sorts, not just sugar, will reduce the risk of developing diabetes when on pred. If there is less sugar there the problem is reduced a lot. I also found I have been able to lose weight even while on pred - and I know a lot of others have found they have been able to limit the weight gain.

      And you are SO right - lunch with friends IS definitely more important.

    • janet08828
      janet08828 Guest

      Posted

      I am borderline diabetic - my GP told me - lose some weight or you will have diabetes to take into consideration as well - so far I have managed to dodge that particular bullet - also blood pressure and cholesterol are borderline - fortunately on the right side of the border!!

      It is all par to the course of pred treatment.

      I remember back to when I started on the pred treatment - I was always hungry - I did control my urges - honest!! The weight just seems to come no matter what. I have cut out all bread, potatoes, rice and pasta and eat lots of leafy greens and eggs, butter, cheese, greek yoghurt and all those sorts of lovely things.

      I have become a world champion in omelette making!

      Anyway I have lost a little weight and can keep it as is.

      It is a labyrinth, eventually you will find a way to cope with all these new obstacles that have been strewn on your path - there is a light at the end of the tunnel - it is just a question of how long it takes to get to the end of the tunnel.

      Don't stop seeing your friends - let them help keep your spirits up and I wouldn't worry about "catching a bug" - haven't heard of anyone having problems of that sort - I suppose that doesn't mean that it doesn't happen - just take it easy, don't stress or worry.

    • Susanne_M_UK
      Susanne_M_UK Guest

      Posted

      Ann. I was diagnosed with GCA at the end of 2014, having had PMR for 5 years.

      After being at home for about 6 weeks, I decided I was well enough to return to work on a gradual basis, doing 3-4 Hours per day. In week 3, I caught a bug going round the office and ended up in hospital with a severe chest infection. It has knocked me back really badly and I had to go back up to 40mg Pred (having tapered to 25).

      I started to feel better, but since yesterday have been feeling really unwell again, slight sore throat and totally drained, having to sleep during the day.

      Perhaps I've just been unlucky that I have been in contact with people with infections, but I'm beginning to get very wary.

      So, all saying is, yes see your friends, that's a real boost, but always check first that they are not coming down with something/have colds etc.

    • Guest
      Guest janet08828

      Posted

      Perfect reply and what I needed to hear...new diet coming my way. Thanks, A
    • Guest
      Guest EileenH

      Posted

      Such a help.. I am encouraged today. thanks,A
    • Guest
      Guest Susanne_M_UK

      Posted

      Thanks so much and I am sorry you have been sick. My rheumy warned me about even a slight cold...we would get a worse one than normal. We all need to be cautious but still have a life, A
    • Guest
      Guest

      Posted

      Susanne, I think I just read that you are Danish. I have a fun discovery to share. I was an adopted child(WWII baby) but did know that my birth mother was of British descent and my birth father was from Michigan. When I read about women of Scandinavian descent, I traced my birth father's surname and by George he was likely Finnish! So we have the perfect profile for this dreaded GCA. a
    • Susanne_M_UK
      Susanne_M_UK Guest

      Posted

      Ann. There are many good things about being Scandinavian, but this is definitely not one of them! Funnily enough, my mum, who is of course Danish and has always lived there, had never heard of PMR or GCA until I got it.

      And just to add another coincidence to this chat, I lived in Alexandria, Virginia for a couple of years during the mid 70s!

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