Newbie introduction GCA only

Bones, joints and muscles
1

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

Hi Lisa,  welcome to the group.  You'll find it a wonderful resource for information and support.  the experts in the UK will Share their wisdom soon.  Due to the time difference you may have to wait till they're on their computers.  

I have PMR but not GCA so can't really give you info but just wanted you to know that you've been heard.

i hope things settle for you soon and "Martha" can go back to her own place.  

Best wishes,  Diana

3

Hi Lisa,

I'm in The States too (Chicago), and am so sorry that you've had to go through all this. I have PMR, but in the beginning, I too felt like I was a different person so your rename to Martha was humerus. And I felt a good way to express how you really don't feel like yourself.

I know that the prednisone can cause a variety of symptoms. Even though I was on a smaller dose from the beginning, except for the few days where the suspected GCA, before they give me a vertebral artery biopsy, I have had muscle weakness, and possibly fatigue from the Pred. (By the way was your CGA confirmed with a biopsy?) When I went down in dosage it made me shaky. I had to take naps throughout the day, and had to give up my thriving massage practice.

I've had to drop the dosage very slowly, but now I'm only taking 3mg per day and am feeling almost normal. For me to get to this place has take about a year since I was diagnosed.

I hope some of the people who have GCA can give you some more encouragement. I know it's hard, but from what I've read, you should be able to gradually get better.

4

Sorry Lisa, I just reread your post, and noticed that they did give you a biopsy, so the result must have been positive.

5

Hello lisa, well what can I say. You are really having a terrible time of it, and all of this abit frightening I would think. I don't have GCA so cannot help you there but there are many members of the forum who will offer you plenty of advice. I suspect that all the terrible side effects are down to the high doses of prednisone, I'm not medically qualified so don't take my word for it, but as the dose lowers the side effects will go too. However, I doubt this will be swift. Prednisone is currently the only drug that can reduce inflammation which is causing the GCA, so as much as you hate it you really do need it. From what I read you are trying every physical thing yo beat this condition and the medications side effects. Don't get me wrong, you gave the right ballsy attitude but just slow down. This condition isn't going anyway fast and so you must slow down too otherwise you will be completely exhausted and I believe exhaustion and stress does our bodies no good and feeds this condition.

one thing you will learn from this site though is our attitude to tapering. 9-12 months! I don't think so! I only have PMR but I've been on prednisone for over a year now and I'm still on 9.5 mgs. If you taper too quickly you risk a flare up and that in turn could put you back to higher levels if prednisone because once again the inflamation needs to be brought under control. What we say is you require enough prednisone to control the inflamation not forcing however much inflamation you have into the level of prednisone. Remember you have only been on this drug for a little over a month and it has a lot of work to do, so hang on in there things will get better. Hopefully some of the members will give you advice on the other drugs some rheumatologists try to give you in order for them to get you off the prednisone, just be forewarned that those drugs have other side effects, some worse than the ones you have now, and there is no proof that any if these drugs help clear up the GCA any faster than simply using prednisone. As I said this is all very new and scarey for you right now. But slow down things will get better. And , I have no doubt that sometime in the future your old you will be back but not now, except the new you as hard as that is and just remember that here in England smoothies are very expensive and are normally advertised as a luxury food!!!! Do take care of yourself and relax a little and be patient. Regards, christina 

6

Hi Lisa welcome to the club no-one wants to be a member of! I'm a PMR-er and although I know a fair bit about GCA I can't speak from personal experience.

I'm sure her plan IS to get you off the pred asap - but GCA has a mind of its own and if she rushes it you may end up back where you are now. For really severe GCA people are often admitted to hospital for intravenous pred over a short time - even higher doses than you are on now for a few days just to get the inflammation under control. Then they reduce. You can't hurry GCA though.

I'm very intrigued though - when you say black of mixed descent, do you mean you have white/Caucasian forebears too? You are a first I think - I know one lady with GCA who was part of founding the UK charities has said in the past she has never come across a black GCA patient. 

Our support groups are all due to a person deciding their area needs a group - they don't arise out of thin air believe me! There is also a "virtual" support group on another forum although it is having hissy-fits at the moment and very quiet as its host forum is being very slow and difficult.

If you haven't come across a post with the links, here it is again:

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

7

Hi Lisa/Martha

I'm afraid I've nothing useful to say other than I like your style! All that self-effacing humour (are you sure you're not British...?)

My own alter ego was John Wayne due to the strange bandy-legged walk I had to adopt. But it sounds as if you have a great family to support you.

Best of luck and I hope Martha does not hang around much longer.

8

Hi Lisa -

Wow, you poor thing - you are really having a time of it -

I am also a GCA only case and I thank my lucky stars that mine has presented itself only in the torso - no head pain at all.

I have been trying to get my prednisolone dose down to a maintenance dose for 2 years now, again I have been fortunate - I have had the usual side effects of the drug - but nothing like the horrors you have experienced - but do take the steroid reduction slowly - after taking 2 years to get down to 15mg daily my rheumy decided that the last drop down to 5 mg should drop over 2 months - this has resulted in a flare up - am back up to 15 and have had to take a couple of days of work last week.

When you read others experiences on this forum you will find the same result and the same advise from everyone who has tried - don't rush - slow is good, and in the long run gets you there faster.

Good luck - I really hope that you feel some benefits of all the horrible drugs soon

Janet

9

Hello Lisa and welcome.  Oh dear,it does sound as though you are going through the mill, but you hven't lost your sense of humour and that is going to be a big positive for you.  I can really empathise - as a past sufferer of both PMR and GCA, I spent undiagnosed, therefore untreated, and unable to get out of bed except for rheumy appointments by ambulance and wheelchair.  I count my blessings as, like you, I had a very sympathetic and caring hubby.

Although there is no known cause for PMR and/or GCA, many people have said, like you, that it arrived following a bout of flu or following stress, and it sounds as though you had a double whammy of possible reasons. I do hope hubby is well recovered now.

The neuralgia-type pain is also something I experienced, especially noticeable after being out in windy condition, and even after some dental work.  The sharp and stabbing nerve pain through the side of my head, face and eye were almost unbearable at times.  I don't know what the weather is like in your part of the world at the moment, but I found that if I protected my head with a hood and my eyes with sunglasses, even in the slightest puff of wind, it helped enormously - I must have become known as the 'local neighbourhood hoodie'! 

Getting off steroids in 9-12 months is not really to be recommended.  Even if you could manage that successfully, it is far more likely to lead to a relapse than those who take it more slowly.  Yes, you need to get down from those higher doses as quickly as your inflammation and body allows, but just to whatever dose is shown to continue to maintain that inflammation.  I started on 40mg and did manage to successfully reduce to 15mg via 30 and 20 fairly quickly, before slowing down to each new dose.

I hope Martha disapears as fast as she came and you soon feel much better.

10

Hi Lisa and welcome to "the club".

I was diagnosed with GCA just before Christmas. Before that, I'd had ONE for five years, but was pretty well symptom free for the last year and on 5mg Pred.

You are going through a horrendous time and my heart goes out to you. My own symptoms are nothing compared to yours, but I wanted to reply to you as a fellow GCA sufferer.

I started on 40mg Pred and have started tapering down in the last couple of weeks. Going down to 35 was great, I got some of my energy back. Today is my 4th day on 30mg but am getting some minor pain in my temple, so well have to see what the blood tests reveal at the end of the week.

I hope you manage to improve soon. It must be so hard with a young child as well. Funnily enough, although I live in the UK, I am Danish, and the Scandinavians are apparently more prone to PMR/GCA. Say hi to Martha!

11

I meant PMR, not ONE. Predictive text!

12

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 . 

 

13

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 

14

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.

15

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. 

16

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

 

17

it was a shock to nearly everyone here that they had a black patient, but no one said anything (you know, race and all being taboo, lol). I thought it was hysterically funny. I had already had my omg moment years ago when I was diagnosed as heterozygous for Factor V Leiden, a blood clotting disorder found primarily in whites of northern European descent. That was when I had developed a blood clot. Add this to the mix and there's clearly some nordic white woman inside me bursting to get out (Martha as we call her). My father is African American, and my mom is a mix of things, namely native american (Narragansett Indian, White and whatever). Her mother was orphaned and never talked much about her background, and her father was Narragansett. Exactly which parent is responsible for the Nordic streak is unknown at this point. My gut blames mum, but then again, it's always fun to blame mum for everything . That's the side of the family with the strokes etc. Dad's side has all the diabetes, high blood pressure. Who knows. Anyway, it was quite the catch for the doctors to move beyond racial assumptions and treat me as a person and not rule me out just because I didn't fit the demographics (though all I hear is "you're atypical" and "you're not supposed to have this" over and over again :D). Thank goodness my sense of identity is pretty solid . 

18

Hi lisa, now I know what ethnic background you're from I'd best ring up my best friend and tell her the bad news! When I was diagnosed I reassured her that this was a condition that she would never have the misfortune of getting! Oops! Just shows you. Christina 

19

Since you obviously ARE very solidly identified - what did you think of the uproar over the Cumberbatch episode last week? I've seen comments from people in the US saying "Get a life, it isn't bothering me and I'm (insert ethnicity)" 

I was brought up in the UK in the 50s and 60s using the terms black and coloured - it doesn't occur to me they are racist terms, after all Kenyan Asians were not black skinned, but they weren't white skinned either. So now I stand there wondering what term is safe to use. 

Racism is learned and it can be nothing to do with skin colour - my very white skinned daughters were subject to racist abuse when we returned to Scotland from living in Germany, because they were (obviously) "Nazi bitches". Approved of by the Polish father - who was too young to remember WWII.

We went to church on the American base where we lived in Erlangen, Germany. Our service was just before the Southern Baptist service, my girls played with their children, they didn't even register skin colour. One day I spoke about "Emily", there were 3 Emilys in the group, one little girl, one white adult, one black adult, I used every descriptor I could think of without saying black, my daughter couldn't work out who I meant. Then I said "the black lady..." - Natalie had never noticed!

Anyway - to be blunt and seriously nosey, what colour skin do you have? I imagine a sort of golden dark brown but no doubt I'm way out!

But this is a whole new aspect of PMR! You're NOT supposed to have this! I can only assume there were some Scandinavian pioneers in your mothers ancestors neck of the woods and maybe a Scandinavian slave owner in your dad's and you got a double dose of Scandinavian genes. 

20

I loved his apology. it was truly heartfelt. here in the states, "colored" has deep meaning. Since he's not from here, I gave him a pass. 

my skin tone fluctuates depending on the seasons. I tan easily and since i'm here in Colorado at a high altitude, we all are exposed to high amounts of sun (Denver is 8500 km up from sea level). At the moment I'm a cafe a lait on my exposed limbs and a very pale face with freckles. My mum had blonde hair when she was a kid. Like most folks i'm a mutt. :D  Who knows what hanky panky when on in the past. My dad's last name is of Germanic descent, possibly from a past plantation owner. haven't traced the family history. Tempted to find out exactly who gave me this extremely poor gene set though. Just so i can go and curse their name :D.