Introducing myself

Hi everyone, my name is Kelly.

First, I want to say how many times I have read everyone's posts and found such solace in knowing I am not alone. I am so very grateful for all of your input on this board.

I live in the USA, am 53, have been a highly active - working full-time for 30 years, raised two lovely daughters, etc., etc. One year ago, I was slammed with a terrible flu and ungodly headache with vice-like pressure. I could barely chew from jaw pain. I had pain down my arms. My vision was weird. No one knew what was going on. On the journey (many doctors and different specialties) they found 2 brain anneurisms and I had brain surgery last July. Still the pain persisted. I fell into the "migraine" hole for a few months and nearly took my life in December. I felt like a hospice patient. Everyone said "there is nothing more we can do for you." I would sometimes have my Dad take me to the ER and I would beg for Prednisone. Other than that, I had absolutely no pain medication that worked. I was in complete despair.

In January of this year, I learned of PMR and GCA. Because I had been on and off prednisone, no inflammation - no test at all - showed. As a result, no Dr. was comfortable putting me on prednisone.

I met with a rhuematologist and he said I was way too young to have GCA and I should work on any emotional issues and get a lot more vigorous exercise. I crawled back to my car.

Finally, another (I had seen many) neurologist was recommended and he diagnosed GCA. I have been on 40 mg. prednisone for 1 month; now at 37.5 for another 3 weeks.

My questions for the wise group here:

- Everyone seems to feel so much better than I do on the Board. My pain is down from a 9 out of 10 to a 5, but a 5 pain is very difficult. I take a few Percocet through the day as well just to get to a 5 pain level.

- On top of that, I feel so tired - emotionally and physically. I cannot make "plans" because I have no idea how I will feel. Every day is a struggle.

- Lastly, the prednisone side effects are tough. I have had thrush, fat redistribution, my face is puffy, my muscles are very weak. I am both restless and have no physical stamina.

Should I feel better? People here are working and caring for people and saying "their lives are back." I am definitely not laying 24 hours in my bed in pain, so that is good, but I wonder if maybe I don't have GCA and should be doing something else.

Thank you for reading this very long email.

Kelly

10 Replies

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  • A lot of the people you hear say they got their life back have PMR - which is a very different kettle of fish altogether - and are on much lower doses of pred than you are. And even the people with GCA have probably been on this journey for years, not just 4 weeks of treatment.

    I do get fed up with doctors who should know better claiming people in their 50s are "too young" for GCA - the international guidelines say "over 50" and we know there are documented cases who are younger, a few are much younger. You cannot argue with a positive biopsy but it seems some are prepared to!

    Because of that intransigence you have been ill for a long time and have been through a lot - there is no wonder you feel ill. And the pred only relieves the inflammation and, as a result, the symptoms. It has no effect on the underlying illness, an autoimmune disorder which makes your immune system attack your body in error and makes you feel, for want of a better descriptor, "fluey".

    Thrush can be managed too, a low carb diet will help the weight gain/distribution to some extent at least and may help the inflammation, sugar is a pro-inflammatory substance. The other things, restlessness, emotional and physical exhaustion are probably the high dose you are on and the illness as well - they will improve with time as you are able to reduce. I'm afraid patience is called for.

    Should you feel better - not necessarily at all. You can't measure yourself alongside anyone else. You have YOUR GCA and you take YOUR pred - and no-one else will be exactly the same. But you have a serious systemic illness and it will take time to recover - a long time. In the meantime you have to learn to pace yourself and rest.

    healthunlocked.com/pmrgcauk...

    butyoudontlooksick.com/arti...

  • Oh my gosh, this was SO INCREDIBLY HELPFUL. You are a lifesaver with your rational, experienced response. I cannot thank you enough for taking the time to respond to me so thoughtfully.

  • The rheumatologist said to me, " you have been sick for over two years. Don't expect miracles. It will take at least as long to be fully well again," Two years! And she proved to be right. She also said I would probably be on 5mg for the rest of my life..... I beat her odds getting well on 4.5 for most of last year but when I reduced to 4mg then 3.5 mg I was in trouble again.

  • Ah, thank you. One of the wonderful things about this group is how "un-alone" (yes, that is my newly crafted un-grammer-like word this morning :))

  • Hi Kelly,

    Your symptoms and reaction to Pred is very normal. Yes many people do say they've got their lives back, but as PMRPro says after many months, or even years, not a matter of weeks.

    I'm going to send you something I send to most new patients, it does cover some that PMRpro has already said, but there may be others things up that may help as well.

    Welcome to our world! ,

    This is what I send to newcomers, hope it will help. There's a lot of information to digest, so you may need to read it through a couple of times, and take your time to read other sites etc. Too much to take in all at once.

    PMR or GCA are not like most illnesses -take a course of tablets for a few weeks or months and they're cured. There is no cure, but the inflammation caused by the underlying illness can be controlled.

    Lots of us are never sure what caused the underlying conditions of GCA and PMR (physical or mental stress are favourites though) but having them means that your immune system is not working correctly and allows certain cells within your blood vessels to grow too much - hence the Giant Cell in GCA. That causes inflammation in your blood vessel walls and means that the blood and oxygen does not circulate around your body as well as it should, so you get aches, pains, stiff muscles and fatigue.

    In PMR the most widely affected blood vessels are those to your main muscle groups - shoulders, hips, knees. In GCA it's usually just the shoulders plus those blood vessels that feed your neck, head, and sometimes the Aorta. Serious sight problems can arise if the temporal artery is affected and causes problems with the optic nerve, if that's damaged then partial, or all sight can be lost.if your Aorta is affected it can lead to strokes, aneurysm etc.

    The only drug that controls that inflammation is Prednisolone (Corticosteroids) it does not cure the problem, but it keeps it under control.

    Usually PMR and GCA go into remission, but that can take a number of years, around 4 seems to be the average, sometimes a lot longer.

    The initial high dose (PMR,15-20mg, GCA,40-80mg) takes control of things, and then you have to taper slowly enough to keep the inflammation under control, if you do it too quickly you may go below the level of Pred that works for you. It's a balancing act, you don't want to take too much Pred, but you need to ensure you are taking enough.

    The usual plan is to reduce every month but, and it's a big but, what looks achievable on paper, in real life it's very often not! As I said most people have started at a bigger dose, and therefore the inflammation at that level is well under control, the art then is to reduce SLOWLY provided you have no return of symptoms. Some doctors don't seem to get the 'slowly' bit! If you reduce too quickly, whether that time-wise or by dose you are likely to go past the level of Pred that can control your inflammation.

    If you remember the mantra-do not reduce more than 10% of your existing dose - it will stand you in good stead. So at 50mg that would be 5mg, at 20mg -2mg or 2.5mg. Obviously once you get below 10mg, that will be part of a 1mg tablet, so most people find that cutting them in half (so long as they are uncoated) gives approx 0.5mg

    Recommended time to take Pred is early morning, with or after food. However the cytokines that trigger the inflammation are produced around 4am, so some people take their Pred around 2am so that by the time it is fully in their system (about hour or two) it's ready to fight the inflammation.

    Try and read as much as you can about your illness, the uk charity PMRGCAuk.co.uk has lots of information. You can find a link if you go to the home page of this site and scroll down, it's on the right hand side.

    There is a book by Kate Gilbert - A survivors guide to GCA and PMR on Amazon - either hard or e copy, just type in GCA or PMR in Books. The North East branch of PMRGCA also has lots of info, link from main charity webpage. You can also get information on the treatment suggested from British Rheumatology site, or patient.uk site has information leaflets aimed at patients and doctors. A little while spent searching the internet will give you plenty of reading.

    Look up 'Spoons Theory on web, (Butyoudontlooksick.com) it's not about PMR but another auto immune disease, and it will give you an insight into how to adjust your lifestyle.

    You do have to do your bit as well though, just because you feel better, you are not back to normal, you still have the underlying disease there. You have to learn to pace yourself, that means resting. Your muscles are not as resilient as pre PMR, so when you exercise - do gentle - Pilates, yoga, Tai Chi all good - no strenuous workouts or marathons! You need to let your muscle recover, and that now takes longer.

    Take more time planning, don't try and do half a dozen jobs all at once, or all on one day! Take any offers of help, even though it may go against the grain at first. Life can return to NEARLY normal, just in a slight slower lane maybe.

    Please come along with any more questions, or just to talk. There's a lot to learn, but there's lots of people on here willing to help

  • Thank you so much for this incredible about of information. Really, really helpful. I have actually copied and pasted this for reference. You are quite the sage on this Board.

  • Thanks. Unfortunately been there, done that, got the T shirt!

  • Have I mentioned your humor on this board has gotten me through many a day. Thanks for that too. :)

  • Well that's a roller coaster! Well done for getting through that lot, though from the sounds of it, you don't feel very got through. I too have been on 40mg for GCA for a month and am 54 for what it's worth. Unlike you I went from being ok to not ok more or less overnight so have more of an idea of what I 'should' be like still. The Pred definitely can give you the symptoms you describe and I certainly get the weakness, restlessness but no stamina. I feel constantly out of whack and can't do much any more. Rewind a bit over a month ago and I was a busy mum, worked and was head cook and bottle washer, so I understand the frustration of walking around like a shadow. My life is not back since I took Pred but I know it is necesssary to keep taking it.

    However, the head pain went with Pred and from what I've read on this forum, GCA pain is not really helped by much else. I the last hours before Pred started, other over the counter pain killers did not touch it. Recently I got scared with a bad headache that Paracetamol didn't do much for but it went in 24 hours and my husband got it a day later, so I guess that was a bug. It may be the head pain is not GCA or something in addition.

    I have some questions regarding your need to take Percocet through the day without much relief - Is there someone medical aware of your amount of use of Percocet with your complicated previous medical history? As it is an opioid type you can get withdrawal too and people can end up on a viscious cycle that can't be stoped by just stopping without advice.

    Have you heard of painkiller rebound headache? It is described here:

    nhs.uk/Livewell/headaches/P...

    Re the thrush, are you keeping your sugar and refined carbohydrates low? Nothing thrush likes most is sugar. Have you had you blood checked for sugar levels because recurrent thrush can be an indicator of diabetes which is one of the problems with Prednisolone.

    I do wish you luck

  • Hi, thank you so much for your insightful reply. Yes, my neurologist prescribed me a small dose of percocet for the first month - he said it will help take the edge off while I get the prednisone in me. He told me it is a small dose at 3 tablets a day at 5mg. I do appreciate your comments about "bounce-back". As life would have it, just yesterday, when I received all these terrific notes, I actually had the best symptom day of the whole 365 days of pain. So, I think that's a really good sign.

    I so appreciate your taking the time to send me such a helpful response.

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