Hi all! I'm Kitty from Gig Harbor, Washington (USA) and this is my first post.
I'm 52 (and of Norwegian decent) and was diagnosed with PMR on June 25, 2015. I have been on 15 mg Prednisone for 3 weeks. My GP consulted with a pain management specialist who actually made the diagnosis. But then my GP left on vacation and I've been riding solo in this for a few weeks. I did call and update her PA as directed.
I responded quickly to the Prednisone and can now get out of bed in the morning. The pain is 75% better. I had a severe paralysis in my hips, shoulders and arms in the AM and could hardly bend my arms or roll over. The achiness and fatigue is still overwhelming. I haven't worked in two months and still don't feel strong enough to do much but lay in bed. The summer heat hasn't helped.
My GP has been on vacation in Italy since she called me with the diagnosis. I've had great anxiety waiting to see her again (on July 23). We didn't get the chance to discuss GCA before she left and I fear that I may have that too. I've had severe headaches for a couple of years (which we thought may be due to menopause). My scalp has been very tender, my vision is fuzzy and I have ringing in my ears. I've also developed an oral thrush infection from the Prednisone. I will let her know all of this when I see her in four days. Meanwhile, I continue the Prednisone and take Percocet as needed for pain.
At 52, I'm very concerned about the impact this will have on my career. I'm a marketing communications consultant in the healthcare industry. It sounds like this could take a while to resolve. Should I be thinking about Social Security Disability or early retirement now? My husband is 12 years older and retired. We're secure financially. But I'd prefer to continue working if I can.
Ironically, I believe this is the same condition my mother suffered with most of her life. She was diagnosed with Chronic Fatique Syndrome and Fibromylagia in her 50's. She passed away a year ago at age 79 after a series of small strokes, dementia and ultimately aspiration pneumonia. I cared for her most of my adult life with support of other caregivers and later, hospice. I left full-time employment 10 years ago to help care for her and my husband (who survived Stage IV throat cancer).
I was really struck by the opening line of Kate Gilberts's book on PMR/GCA when she first became aware of her condition and immediately related it to what her mom had. When my doctor said I have PMR, the image of my mother crying out to me with fear that I would get it too, is what came to my mind. In retrospect, I believe PMR/GCA is actually what she may have had. She also had a stroke in her 40's but recovered. Her brother had a brain aneurism, and more recently a stroke at age 75. He's recovering well. This is the Norwegian side of my family. The other side is Irish 🍀.
Sorry for the life story! I'm feeling a bit alone in this. Appreciate your thoughts about work!
Many thanks for this great chat room! Warm regards, Kitty
so sorry to hear about the difficult time you have had. Things will get better. I was diagnosed in April 2015 and can remember the same thoughts and fears going through my mind. Although I am older than you (60) I still work although I did have one month off and have been on a phased return since then. I am now back to my normal working week but I have to pace myself.
I would not try to think about things at present. Prednisolone does help the pain but does affect you and until your body settles its probably not a good time to make life changing decisions.
Be gentle with yourself and go with the flow for the moment. I am sure you will feel better when you have a chance to meet with your GP and discuss your situation.
Best of luck over the coming months - you will get through this.
Please don't feel that you're alone. I'm sure you'll find new friends on here that know what you are going through and can empathise. Although there is no cure as such, the symptoms do respond well to steroids and can be controlled for the most part.However there are 2 things I learnt very quickly. Don't try to rush reducing the meds. You could cause a flare up and have to start all over again. Number 2 is don't try to do more too quickly just because you are having one good day. It'll jump up and bite you in the ass for days to come and you'll feel more exhausted than ever. Carefully pacing yourself is the way to go. Be aware that it can take many months for it to subside, but it can be managed and worked around with a little care.The main lesson is plenty of breaks between doing things.
I hope you find this group as supportive, friendly and helpful as I have. and know that you are not alone.
I have PMR, and have been on prednisone since Oct, 2013. currently I use 5 mg pred daily, and intend to hang here for a while, hoping my PMR will go to sleep!
One of the most pervasive and frustrating effects of this disorder is that it seems to have impacted my "executive brain function". I have trouble multi-tasking, and also have no tolerance for stress, of any kind. Fortunately I am retired, because it is doubtful I could have functioned in my professional capacity, once my PMR was fully engaged.
As you read this forum, you will see that lots of people continue to work. Most make concessions to the fatigue, etc., by relaxing the housekeeping regime, turning down social commitments, and taking plenty of rest periods during the day.
Forum users with much more knowledge than I, will be weighing in regarding your possible GCA. Good luck, and stay with this forum. You will find your answers, and support 24-7. Regards, Jerri
I can't comment on the US and benefits - but I suspect it is very unlikely that someone in the UK (most of the participants here) would be offered much in the way of disability benefits! The official line is that PMR can be managed well with corticosteroids - and even doctors struggle to understand when we tell them that yes, it does help a lot but we are NOT back to normal. Working part time or early retirement sounds good to me! We indulged in early retirement, not because of the PMR but because we could afford to and my husband had had enough of the restrictions being imposed on his research within the NHS - he's a medical scientist, not a manager. We continue to work now and again - but it is good to be able to say no! We have less income - but an infinitely better quality of life. Life is too short to be miserable even if you are wealthy!
I continued to work with PMR even though I was not on pred - I wasn't diagnosed because I was "too young" and had "normal bloods". But I was a freelance translator - I only had to get to sit in front of my computer, didn't have even to get dressed if I didn't want to and could work when I wanted to. I doubt I could have managed to travel to an office for a specific time in the morning using public transport - if I could drive there it was OK but I couldn't walk far. After a couple of weeks on pred (eventually after 5 years) I flew to the US with my husband for a conference with relatively few problems. It does improve - after 6 years on pred, now at 5mg, I have just spent 3 weeks in China on a tour and at a conference. I have climbed hundreds of stairs and done almost everything everyone else did.
However - however rough you feel DON'T just lie in bed. Get up and do things in small bites - 10 minutes of something, 5 mins rest, rinse and repeat. Lying in bed results in loss of muscle bulk and strength, the less you do, the worse you will feel and it is a downward spiral. Walk gently, the rest and repeat mantra applies there too. I did aqua aerobics almost every day - at my level not that of some of the class - and it made me far more mobile. I also did Pilates and Iyengha yoga - both adapted to accommodate the PMR. I managed most things - adapted though. Once you get moving you find it increasingly easier to move - sitting still for any length of time leads to something called myogelosis, stiffened muscles, and you have to overcome that all over again.
If you find the heat oppressive and the pred probably isn't helping since it can cause hot sweats/flushes - wear lighter layered clothes and put on a fan. We are having highs here in northern Italy at present of 33C/91F - I'm sitting with the doors open at present (10am) while it is about 21C/73F and will shut them shortly - and they will stay shut until this evening. We have no air-con - not usual here in Europe and not worth it. I have a fan on behind me to keep the air moving. We go out early - on foot. We live up a mountain - it's a bit cooler than the valley but not a lot, especially in the sun!
As 35bump has said - pacing is the secret. Google the spoons theory by Christina Miseriando for an allegory. You do what you need to do - and it is a lesson in identifying priorities.
As for GCA - if you get any visual symptoms that are more than blurriness or a really severe headache then go straight to the ER and tell them all - but if it has all been going on for a couple of years you're probably not too bad for another few days although I'd suspect the idea of GCA isn't too far from the mark. The local rheumatologist here is of the opinion that 15mg will deal with most GCA - it can be all over the place. It is if it affects the blood supply to the optic nerve that it is a real problem and they use much higher doses of pred to reduce the swelling and restore the blood flow quickly in an attempt of avoid the risk of visual loss which can be a very real risk.
If you are put on a higher dose of pred then the working considerations take on another dimension - high dose pred is another world and, as Purplecrow has said, whether the sort of executive decisions you have to make in business are possible is a different question! I struggled to concentrate at 15mg - but that could have been the PMR too as it didn't help mental processing either!
PMRpro, I want to thank you for giving me one of your spoons with such a thoughtful response. I so appreciate your wisdom on these issues and am taking it all to heart. Many thanks again! Kitty
You might like to consider this information booklet, the following ws posted on another thread on this site.
Have just read "Living with PMR and GCA", a new booklet by North East Support. It really is superb - a book for patients written by patients who know what sufferers are going through and need to know. Cannot praise it highly enough. Wish I'd had it when I was first diagnosed with GCA five years ago. I do hope PMR&GCA North East will be able to make it widely available.
Hi Kitty and welcome - as you will have already found from the friendly and helpful replies you have received so far, hopefully you will no longer feel so "alone" as you adapt to coping with something most of us have never heard of before diagnosis. "Norwegian descent"? Blame those Vikings!
Those of us who haven't had to work whilst going through PMR/GCA are always in awe of those of you who have to. The others have given you lots of advice. We know of people who have returned to work after an extended period of sick leave, usually on a part-time basis at first and gradually increasing their hours, and it has worked for them. Certainly, for anyone working in a stressful environment, that is not to be recommended as PMR loves stress. As someone else has said, no need for a hasty decision at this very early stage following diagnosis, especially if you are able to take a period of extended sick leave.
It isn't long to wait until 23rd July to see your Dr now - meanwhile, if the "tender scalp" and other symptoms haven't improved since commencing steroids, then that could point to the possibility of GCA which would need a much higher steroid starting dose to get those symptoms under control. If you have any signs of vision problems then do go immediately to A&E (emergency room in US?). Meanwhile, go to a good ophthalmologist and ask for a thorough examination of the back of your eyes for any sign of GCA.
Just a couple of tips to add from my own experience with both PMR and GCA, and steroids (it might give you a morale boost to hear they are both now in remission!).
Firstly, if you don't already have it, do eat a small pot of 'live' (probiotic) yoghurt with your breakfast each day before taking Pred - apart from easing the oral thrush, it will also help to line your stomach from the steroids.
Secondly, toothpastes containing triclosan and/or sodium lauryl sulphate are known to cause or exacerbate mouth ulcers, so best to avoid all those. One that doesn't contain either is Sensodyne ProNamel.
Keep reading Kate's book, and keep coming back.......even if just for a chat!
I am also a new member here and live in Sonoma, WA. I lived in Seattle, WA all my childhood and much of my adult life. Gig Harbor has always been one of my favorite areas to visit.
This group is so awesome. I have PMR/GCA and was finally diagnosed within the last 3 months. I am presently taking Prednisone 60mg for the GCA symptoms which is not a lot of fun. However, I have been assured of the necessity of this medication by the people here which really helps the day to day struggle and doubts.
I'm so glad that you are seeing you GP in a few days. It's hard to be out on the limb.
My biggest battle is trying to do too much right now. If I have one good day, I think I'm ready to lick the world. Not so. Rest is so important, and is gentle exercise and walking.
I know you have had very hot temperatures of Washington this summer. I get up early and walk our two dogs in the morning. It's a wonderful time to walk as there are not a lot of people around, and I can just breathe in the beauty and coolness of the day.
I wish you the best in finding the right balance in your physical, emotional, and spiritual life. Know that you are a special person who happens to have a difficult challenge now. Draw stength for those who support and encourage you.
Hi Kitty, I was diagnosed a month ago and need to go back to work but know I'm not well enough to. It's an emotional transition. I've always been a 'busy-bee' and suddenly I can't. So a change in attitude is developing, for the first time in my life I am the primary focus. It's all about my health and healing. This forum is manna from heaven. There's so little available here in the states. Take care of yourself, tune in to what your body is telling you.
Hi Kitty,
I am Don and my wife has been diagnosed with both PMR and GCA. We are currently in New York, but our home is on Bainbridge Island. We are very familiar with Gig Harbor and have friends living there. First, do not delay with GCA. In the US, it is treated as a true medical emergency. It can take only days for really nasty things to happen. You can easily find all the symptoms on line. If you think there is a chance you may have GCA it is important to treat it as an emergency. The gold standard test for GCA is a temporal artery biopsy. Its easy and an outpatient procedure, but it must be done. The standard protocol is to increase the Prednisone to as much as 60 or 80 mg a day to eliminate the possibility of sudden irreversible blindness. (The clumped white cells (the giant cells) block the capillaries supplying the optic nerve end and the nerve end dies. Please don't think I am being an alarmist. It's just so important to know as much as possible about what is happening.) this prednisone dose is maintained for enough time to reduce your inflammation markers then it is tapered. It takes a higher dose to manage GCA than it does PMR. Also you should be under the care of a Rheumatologist. My wife was diagnosed with PMR two years ago when her CRP was 130 and her sed-rate was 80. She responded well to 20 mg prednisone daily and had tapered to 3 mg one day and 1 the next when in May she began to experience headache, fatigue, more large muscle pain nausea and we suspected GCA. We called the rheumatologist who put her on 80 mg, we did labs for the inflammation markers, scheduled temporal artery biopsy and saw an ophthalmologist. The ophthalmologist can tell if damage has been done. In this case we were lucky. She never really experienced eye symptoms and not everyone with GCA will have eye involvement. The biopsy came back positive though for GCA. There are other less common problems associated with GCA though. GCA can cause sudden aortic aneurism or stroke. If you think you may have GCA, the normal procedure is to go to the emergency room and tell them you think you have it. Once you have a diagnosis, either positive or negative you can deal with the PMR more realistically. No one wants to be on 60 mg of prednisone ever, so if you don't have GCA you won't need the heavy dosage.
I can go on, but I don't want to you to think I am all gloom and doom. We have actually had a very reasonable life with PMR and now with GCA. We have learned a lot about inflammation and the diseases. We have made changes in our diet and our lifestyle. There is a wealth of information on line and her Rheumatologist at the Doctors clinic was very knowledgeable and supportive. Please let me know if you would like me to share more of our experience. Good luck with your PMR and remember, this does go away.
Don
in reply to
Hi Don,
It's great to know I have PMR/GCA friends so close to home!
Thank you for your advice about the GCA. My GP is back today and I will call her about my GCA symptoms. She has referred me to a Rheumatologist and I'm following up on that too.
You're an angel to take such good care of your wife. She's a lucky lady!!!
Don, great info! Nice to know there's more of us here in the U.S. who can talk to eachother.
in reply to
Hi Don and friends,
Wanted to thank you again for all the great PMR/GCA info and counsel!!!
My GP has called me in ASAP for more blood work; increased the Prenisone to 20 mg; has referred me for a temporal biopsy (being scheduled now); and set me up with a highly recommended Rheumatologist (Patricia Popodopolous, MD with MultiCare Rheumatology in Tacoma). I will get my blood work in the AM; and expect the docs to call me with appt. times. I see GP again Thursday.
Finally feel like I'm cooking with gas!
BTW: To all our British friends, nice job with the British Open! Great event!!! I was rooting for Jordan Spieth. His caddy is from Gig Harbor, WA my home town. He won the the Masters and the U.S. Open. Lost the triple crown by 1 stroke. Darn! But loved watching the tourney in St. Andrews, Scotland on TV with all the beautiful scenery.
Thanks again! Kitty
THANK YOU all for your words of encouragement and support!!! I'm so grateful for each and every one of your comments and words of wisdom- especially PMRpro's comment about getting up and moving. That's been my biggest challenge so far. I have two Golden Retrievers who would love to walk me in the mornings, so I'll try to do that this week 😄.
I also appreciate the suggestion not to make any big decisions at this early stage of the diagnosis.
It's so nice to have such words of wisdom at a time when I'm not thinking so clearly.
You're not alone in this and there is so much more we know now about this disease. Being of European descent is prime and your stress load is also a factor. If you are having headaches and vision problems your doctor needs to know as soon as possible. This disease can be managed and there are lots of us here to support you and help you through it. You will have remissions and flare-ups but you will be able to work - main thing is to have a positive attitude and have lots of good support and information. This site is the best that I have found (I'm in Canada) and everyone is helpful. Good luck with your doctor.
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